On September 17, 2021, we held The Victory Summit® Virtual Event: Mental Health and Wellness, shining the spotlight on how to manage the symptoms you can’t see in Parkinson’s.
In case you missed the event, you can watch all the recordings of the presentations below.
Welcome and Inspiration
Polly Dawkins (Executive Director, Davis Phinney Foundation):
This Victory Summit Event is focused on mental health and wellness. I’m Polly Dawkins, the executive director of the Davis Phinney Foundation. Thank you for being here. Alrighty. I am getting ready to introduce our first speakers, Davis Phinney and Connie Carpenter Phinney are athletes or entrepreneurs are advocates, they’re authors, they’re parents, they’re people living with Parkinson’s and care partners. And one of the things that I have learned from Davis and working with Davis and Connie over the years as cofounders of the Davis Phinney Foundation, is that they are just lifelong advocates for wellbeing for our community, the Parkinson’s community and beyond. And that has been really the impetus for the existence of the Davis Phinney Foundation, which they found at 17 years ago. So welcome Davis and Connie. And I’m going to turn this over to the two of you.
Connie Carpenter Phinney and Davis Phinney (Founders of Davis Phinney Foundation): Thank you, Polly.
Davis Phinney:
I’m Davis, and this is my lovely wife Connie. Connie Carpenter Phinney:
It is. And we’re really happy to be here. And just so appreciative of everybody who’s taking the time on this Friday to just kind of get a health and wellness check, I think. I think that’s why we’re here and we can all use that. So man, we’re happy to have you here and I can’t believe that over half of you, this is your first time being exposed to a Victory Summit. So I’m gonna, I’m going to also maybe assume that this is the first time half of you have been exposed to us and we’re married, we’ve been married, our anniversary is coming up, we’ve been married, you know, 37, 38 years now. And you know what, half that time now we’ve been living with Parkinson’s disease in our relationship, a very unwanted, but we’re very accustomed to this guest in our relationship.
And so we wanna welcome you to the two of us. We do speak with some humor. So you know, give us a little break if the humor falls flat and we can’t hear you laughing out there. So we’ll do our best to keep it light.
Davis Phinney:
We’ll just assume that you’re laughing. Connie Carpenter Phinney:
That you’re following us. But we’re really happy to kick this event off. And it’s so important, especially as we wrap up summer and come into this fall, where once again we find ourselves you know, here in Boulder, Colorado where live with a renewed mask mandate in order to protect ourselves from COVID and you know, it’s just, it feels like tough times, right. You know, it’s not an easy time to be navigating Parkinson’s with a global pandemic, but we’re doing it quite well. And Davis and I have actually said too, that I think some of the key traits that you’ve learned or learned to, you know, personified through Parkinson’s have really helped with dealing with this pandemic as well. And so I think you know, we just want say thanks for being here. And I don’t know if you have something you want to say right away, but otherwise I’m gonna get this going
Davis Phinney:
I mean you’ve got a good roll going so I don’t want to stop that.
Connie Carpenter Phinney:
I got a good roll going. He knows what to say. Anyway, hey, listen, I want everybody to just kind of sit with me for a second. We’re going to do just a little breathing kind of visualization exercise to bring us into the here and now of the moment that we’re in.
Davis Phinney:
Again, we are from Boulder. So you got to expect a little bit of…
Connie Carpenter Phinney:
You know Boulder, where, you know, I think visualization is a big part of what we’re up to today with mental health and wellness, because what we really want to do is visualize a positive outcome, you know, throughout the day, throughout this morning of learning and thought to not focus on the negative, but really focused on the positive. So let’s do that together. You know, we’re in it together. We’re here together right now in this moment and we’re bending time and space a little bit to actually, you know, be together. And even those that will be listening later will be part of this togetherness. So what I really want to ask you to do now is, you know, if you can, put both your feet on the ground, maybe soften your gaze, you don’t have to be looking at us through this next few minutes, but you know, maybe close your eyes and let’s just all take a nice inspiration through our nose.
Let’s breathe in through our nose, hold it for a second and then just let it out and really feel your shoulders drop. Feel yourself, kind of come into this present moment where we’re all here together. We’re taking this time together and let’s breathe again inhale all together and then let it out. And when we let it out, let’s imagine on the next inhale again, keeping your eyes closed. Let’s imagine that we’ve all been airdropped into the Colorado wilderness. There’s three and a half million acres of wilderness in Colorado. So I want to imagine that we’ve all been airdropped into the same beautiful valley. Let’s take another breath then with that imagery that we’re all together in this vast wilderness, we’ve found each other nice inspiration and let it out. I’m envisioning a mountain lake some beautiful mountains in the background, a nicely packed lunch.
Davis Phinney: And the aspens.
Connie Carpenter Phinney:
Yeah. What are the aspens doing? It’s coming on middle of September, they’re turning golden in Colorado. We don’t get all the full colors that some of you get, but we get a lot of golden in the hills mixed in with the evergreens.
Davis Phinney:
And you can hear the leaves.
Connie Carpenter Phinney:
You can hear, they say the aspens quake, they rustled together. So just be in this moment together and think about what that means that we’ve come together. We’re not isolated, we’re out in a vast wilderness and it’s actually beautiful here. We’re in a beautiful place. I just want to emphasize that we’re here together. We’re here together and we do need a little help. So we’re going to ask for help to find our way out, to find our way to another view to another place and just take that time together to do that. And so please take another breath in and imagine yourself in the most beautiful place with beautiful people and we’re all helping each other, and now let’s let it out, open your eyes, ah, and just be here, right?
We’re all here together in this place, searching for answers. We might not even be that eager for a way out because it’s so beautiful here. And that’s part of shifting your mindset. That’s part of what we like to do, shift our mindset. Davis and I like to every day, we’re actually pretty simple in our needs and desires. And one of them is just to have a moment of awe. And so if we look outside, Davis never moves faster than when he’s moving outside to take a photo of a beautiful sunset, right?
Davis Phinney:
Right.
Connie Carpenter Phinney:
And you know, we just don’t want to miss those moments. And so this is a day of reflection on moments, you know? And we talk a lot about that with moments of victory for Davis. And he’s gonna give us a little message on that right now. But the first thing I wanted to ask him is how are you doing?
Davis Phinney:
I’m doing fine .
Connie Carpenter Phinney:
Oh, and he knows fine is not an okay answer. Don’t you hate that? When people say fine, how fine could you be? You’re not fine. What are you? You’re better than fine.
Davis Phinney:
I’m good, I’m great.
Connie Carpenter Phinney:
You’re good. And you’re a great, or, you know what, if you’re not great, it’s okay to say that too. But I think today is great because we know we have several hundred of you listening and learning and sharing and being together. And we know that’ll trickle out to, you know, to other people and other places. And we encourage you to share. It might encourage you to look for resources in your own communities as well. But this whole concept of fine is really bothersome sometimes because too often people ask us, how are you? And you say fine. And you’re really not fine. Not that many of us are fine during this pandemic. So it’s okay to say, not so good or today was great and maybe explain why, but lately Davis has been having some great moments and I asked him to, you know, let’s talk a little bit about that. Like some of your discoveries in the last few weeks, I would say with your friend, Kevin, who also has Parkinson’s. Hey Kevin, if you’re out there.
Davis Phinney:
Kevin and I have both joined a very nearby to us, health club and we’ve created this whole essence of playfulness, which is a childlike quality, that seems pretty far away if you have Parkinson’s.
Connie Carpenter Phinney:
Yeah. Let’s say that again. So a childlike quality that feels pretty far away when you have Parkinson’s right. I mean, I think, you know, we’ve been living with it for a long time. We’re not youngsters, but these guys have kind of reinvented play in the health club.
Davis Phinney:
So we set up all these various stations with lots of implements of that challenge our balance and our training as well as…
Connie Carpenter Phinney: Cognition.
Davis Phinney:
Cognition. Yeah. Because when we’re each standing on a half ball trying to retain our balance, while throwing a medicine ball to each other and then naming musical bands, that begin with M or B or D that’s a challenge. Believe me.
Connie Carpenter Phinney:
And that’s some of those you guys I used to do when you were going to rock steady boxing. I think Kevin still goes there. And so that’s the thing is like challenge your body and your mind at the same time. And you know, I bet you do a lot of laughing in that.
Davis Phinney:
Well and speaking everything out loud so that we’re using our voice with that too. But yeah, I mean, I’ve found that those are some surely moments of joy, especially when I can actually come up with a band name or else and not lose my balance.
Connie Carpenter Phinney:
Yeah, please don’t do that. So, I think that, you know, the, the message really with that too, is just, you know, is to mix it up, right? To seek companionship when you’re out. I think that’s been really helpful because isolation is, you know, is really one of our enemies as we age and especially with Parkinson’s. And so to reach out and find community, you know, and it was really tough I think during the pandemic, when, you know, you couldn’t go to some of the classes that you were used to going to, and you know, we all got a little bit used to zoom, but to be able to resume things safely and you guys are doing that indoors now with a mask, but that’s fine, because guess what you’re still together, you know, and you’re still able to to do what you want to do. And so it’s a question of staying safe and still working toward the future because any work that you and Kevin are doing in the gym is, you know, preserving your health and improving on your health.
Davis Phinney:
Well, right. And now, our number one mantra is no injuries.
Connie Carpenter Phinney:
No injuries. Yeah. Yeah. And that’s a good one. And sometimes you may need to go to you know, to go to the doctor, maybe get with a PT first and find out what you can do or what maybe you shouldn’t do or what you really need to work on. And so we’d really like to encourage you to do that too, and keep your circle of care active and keep yourself active. And of course that’s a big mantra of ours.
Davis Phinney:
Yeah. And also to be creative with your form of exercise.
Connie Carpenter Phinney:
Yeah. Because any PT will say the best form of exercise is the one that you’ll do.
Davis Phinney:
Well, the one that you do and but if you can expand on that one exercise, so you’re not just in too much of a rut of doing the same thing, but challenging other aspects of your body and mind, that’ll be very helpful for your Parkinson’s.
Connie Carpenter Phinney:
Yeah. And avoid being frustrated. Remember too, some of you, you know, we’re all in this journey at different places. And so some of you are in a newly diagnosed category. Some of you have been living with Parkinson’s for quite a while. Some of you are doing very well, managing well, some of you are frustrated. So I want you to remember, always that, you know, Parkinson’s is this kind of tripartite of mood, physical symptoms, and cognitive symptoms, right. So it’s not what most people assume from the outside, if they see a tremor that that’s the extent of your Parkinson’s and of course not all who have Parkinson’s even have a tremor. And so in keeping all that in mind, it’s like those three areas need work, you know, whether it’s mood, whether it’s cognition, and whether it’s physical symptoms and they’re all intertwined with the medicines that you take. And so the important thing is to really, you know, work in concert with your doctors and your caregivers to try to find…
Davis Phinney: Dial it in.
Connie Carpenter Phinney:
Yeah dial it in. And it’s an ongoing process we’ve found. Yeah. Not every day is the same. If it was, that would be a little easier, although it does give you hope for even those better moments. Right.
Davis Phinney:
Yeah. Well, and as you speak about mood, it reminds me of our conversation with our great friend, the poet, Wayne Gilbert,
Connie Carpenter Phinney:
Who’s probably also listening. Hi Wayne.
Davis Phinney:
Yeah. Whose wife, Alice, challenges him every morning and every evening before he goes to bed to come up with four things that he was grateful for throughout the day and what he’s looking forward to in the morning. And at first, he was sort of put out by that, but then he realized that he was actually looking for moments to be grateful for and noticing things that he wasn’t noticing before. And so that I would say with equating to an every victory counts type moment.
Connie Carpenter Phinney:
Yeah. That’s for sure. And so, you know, we talk about this whole concept of joy and happiness and how to cultivate that in your life as well, because it’s not, you know, that’s what all of us humans need to do, and it’s not just people with Parkinson’s, you know, we need to cultivate our optimism. We need to cultivate our gratitude and what better way than to actually write it down and then put it, speak it, tell people, you know, share what you’re grateful for. And sometimes, it’s a list of people’s names. Sometimes it’s events that have occurred in the day or sometimes it’s a global event that’s happening that you’re like, oh, thank goodness, you know that everybody’s okay. You know, or whatever, from a natural disaster. There’s all kinds of things to be grateful for near and far.
And so we would like to challenge you to start cultivating that for yourself along with a few other things. So the concept of cultivating, you know, happiness and improving our mood also goes to kind of bringing some humor in, and as we approach the end of our 20 minutes here one of the things Davis and I like to do, because, you know, one of the really, really difficult parts of Parkinson’s is facial masking. And we all, as humans rely on each other’s facial expressions to read into what people are understanding or what they’re thinking about us, or, and a lot of times with a flat affect that Parkinson’s can cause people are misinterpreting you all the time and, or you’re just a little bit slower. So you’re, you know, you’re not quite on the joke line or you’re not able to Quip as much.
Davis Phinney:
And this is an actual facial mask, not a Co-Vid mask.
Connie Carpenter Phinney:
Oh yeah, that’s a good point. Oh, double masking. Oh goodness. Yes. And if you’re not familiar with facial masking we also, our daughter actually did a pretty good series on that with an expert on facial masking. So that’s the point when your face is just more blank. And it was actually quite interesting for Kelsey to do this because I always say that, you know, if you’re, if you have Parkinson’s and you have teenage children and they’re trying to provoke you and your face is kind of blank, it’s really irritating, to the child, but it’s actually sort of a line of defense for any parent is not to be too reactive. But in any case, I digress. What we like to do is work on our facial muscles sometimes.
Davis Phinney:
Which brings in some humor. Connie Carpenter Phinney:
Which brings in some humor because we normally do it like in the bathroom mirror, but we wanted to invite you to do it with us. Because we actually have the screen in front of us. We can pretend we’re in the mirror by ourselves being silly. But it allows us to open up our face. And especially for Davis.
Davis Phinney:
That feels good, you get a certain buzz from… Connie Carpenter Phinney:
You get a little buzz from just being goofy and just opening up those tight facial muscles. Right. And especially if you don’t get to see a lot of people during the day and you’re not interacting as much. So let’s all just do that for just a couple more seconds and just appreciate the fact that we can laugh a little bit together.
Stress management, Mindfulness, and Parkinson's
You can read the transcript below. To download the transcript for “Stress Management, Mindfulness, and Parkinson’s,” click here.
Polly Dawkins (Executive Director, Davis Phinney Foundation):
We are thrilled to welcome to the virtual stage, Dr. Luke Seaward, the topic that we’ve asked you to speak on today your expertise really is applicable to all humans I would expect, and that our particular passion is, is Parkinson’s. And so we look at life through a lens of what will help a person with Parkinson’s and all those who are affected by Parkinson’s and your message, the reason we’ve asked you to join us is really universal to all of us. I’ve got some questions to start off. My first question comes out of curiosity. How did you get into this work? What drew you to this work? And what, tell us a little bit about your journey.
Brian Luke Seaward:
Yeah, well, that’s where I have some connection to Davis and Connie. I got in this work because of my passion in the field of sports psychology. And for a number of years, I was a sports psychologist with the Olympic biathlon team for the ADA Calgary Olympics. And after that ended, the money ended. And so I went back into academia where I have been teaching for quite some time now. I have a top selling textbook on the topic of stress management. And as well as you may have heard you say a few other books, I’ve written along the way there, but we typically say that stress is an equal opportunity destroyer. It affects everybody. And as we can see in the past several months to a couple of years, it’s affected us in ways we didn’t even know was possible.
So I’m very much driven by the idea of how stress affects performance. And of course the elite Olympic athlete is the epitome of performance, but it comes all the way down to everything from how we sleep, how we communicate, how we drive, everything and of course you know, being here in Colorado for as long to have now, when what happened at Columbine happened, I think it’s close to 20 years ago, I then was asked to go down and speak to the the faculty of the school down there. And I ended up having several students when I taught at the University of Colorado who were in that building dodging bullets.
So my experience with stress has kind of taken me places I never thought possible, but the bottom line is that everyone’s got stress. And the question is how do we best navigate through this gracefully?
And I’m convinced that that’s possible. When I meet people like Davis and Connie, and I’ve met scores of people who’ve had hellacious experiences, oh my God, man, I’ve written books about this. There’s two ways you can do this. You can either go through as a victim or as a victor. And the victim stories are all the same. And the victor stories I take delight in because as I ask them, how’d you get through this horrible event? They say this. It’s almost like they all have the same punchline to a story. They say at the time I was going through this, I thought it was a worst thing that could’ve ever happened to me. But now, I can honestly tell you it’s the best thing that’s ever happened to me. Whether it’s cancer or losing a child or being a quadriplegic. And I’m thinking to myself, would you repeat that? I want to make sure I got that right. And they say it again. It’s the best thing that’s ever happened to me. And you’ve got to think to yourself, how is that possible? But they’ve learned to see the bigger picture and not just focus on the one aspect that has been the biggest challenge.
Polly Dawkins:
A question that maybe we could start with some definitions. So our audience, we can all be on the, about the same page. You’ve started with stress. How do you define stress? Or how do we understand stress?
Brian Luke Seaward:
Yeah, well I think before we do that, I’d like to define the word wellness because it’s been around for a while, but it’s kind of like got different aspects. So my definition of wellness is this, it’s the integration, balance, and harmony of mind, body, spirit, emotions, where the whole is always greater than some of the parts. So we’re not just a physical body, we’re a lot more than that. But then, so I’m gonna use that template with mind, body, spirit, emotions throughout this whole presentation. So we’re going to come back to this, but what are some definitions of stress? Probably the most famous one comes to us from Hans Selye, the grandfather of stress management, who says that stress is wear and tear on the body. And I think anybody who’s ever had a tension headache, knows what that’s like, anyone who’s gotten older, knows what that’s like.
But another definition says that stress is the loss of emotional control. And I think to the example of road rage, and you know, that’s definitely a case of this. We see this a lot in the news these days, all kinds of rages. Another one says that stress is the inability to cope with problems, a very cognitive-based definition. And this one I like the best, but it’s really hard to quantify. It says that stress is the absence of inner peace. How do you quantify inner peace? Now, the reason we’ve always had so many different definitions and there’s scores more is that this topic of stress is a study in the field of psychology, physiology, anthropology, sociology, theology, and a few more, and everyone has their own take on it from their own perspective. They don’t really talk to each other. But if you were to get these experts in a room and say, no, one’s leaving till we come to a consensus, you might hear them say, this, stress is a “perceived threat,” and we will put the words perceived in quotes. And then we say in parentheses (real or imagined) because we can all make mountains out of mole hills. You know, I love the quote by Mark Twain, who says, “I’m an old man now. And I have known a great many problems in my life. Most of which never happened.” Stress is or perceived threat, real or imagined to our mind, body, spirit, or emotions.
And I want to focus on all four aspects because so much of the Western biomedical models says that stress is a physical thing, and it’s not, it’s a lot more comprehensive net. And also this particular model of wellness. There’s no division between mind and body, body and spirit, spirit emotions, it’s all one incredibly dynamic situation here. Yet in the Western mind, we try to divide and conquer. And the physical is the most obvious because it’s the most easily measurable, height, weight, blood pressure, cholesterol, but the mind is so important. The emotions as Connie mentioned, with mood is so important. And how do you talk about spirit? It’s not the same thing as religion. It’s the health of the human spirit, it’s the vitality. It’s a lot more than that, but anyway, so those are some definitions. I got one more definition for you about this stress is any change you encounter in your life. Boy, we’re going through a lot of change right now.
Polly Dawkins:
Exactly. May I ask you a quick question or a quick thing? Some, one of the symptoms of Parkinson’s is a slowness of movement, a slowness of processing. And one of those is the thinking and processing and listening. So I’m going to ask that we maybe slow down a little bit, so our audience, that’s okay, you don’t know our community as well as we all do. If you wouldn’t mind, we’ll take this a little bit slower so people can understand since we don’t have a transcript yet for folks, and we will send the notes. So if you don’t mind that, and I might ask you to repeat a few things, so that we can grab on to them, if that. Your excitement and your passion is getting me excited as well.
Brian Luke Seaward:
When I get excited I speak faster. So I gotta, I gotta slow it down. So thank you.
Polly Dawkins:
Well yeah and we’re also learning what your field and it’s so interesting. And we can do part two of this too next time for our audience. Another question is somebody in the chat has, Debbie Perkins has just asked, what then is mindfulness?
Brian Luke Seaward:
Yeah. Great question. And it is definitely the buzzword and has been the buzzword for about the past 10 years. So I’m going to give you a simple explanation because we could spend hours on this one question and we don’t have that much time, but mindfulness basically is learning to live in the present moment. Now by and large, let me go back a page into our earlier discussion about definitions of stress, wherever there is prolonged stress, there is ego and the ego actually is what trips the fight or flight response and says, you know, “Danger Will Robinson. We got problems here.” So you need your ego. You know, I live outside of Boulder. I could tell you, I see bumper stickers that say, kill the ego. And I’m like, no, don’t do that. You need it. You need your ego.
But when the ego gets involved outside of fight or flight survival, then all hell breaks loose. So mindfulness, the best definition I ever heard of mindfulness and meditation is this, it’s learning to domesticate the ego. And the tagline is if you don’t, you’re going to have poop all over the place. So going back to the idea about ego, the ego pulls us out of the present moment into the past. And in in the past, we have senses of anger and frustration or the future, which is often about worry or anxiety. Fight or flight. Anger is fight. Fear is flight. Those are the two primary stress emotions. So mindfulness says, let’s live in the present moment and leave anger and fear out of the picture.
Polly Dawkins:
Boy, we’ve all been living in sort of extreme present moment over the last 18 months, haven’t we, without being able to do much planning.
Brian Luke Seaward: Yeah yeah.
Polly Dawkins:
Can you tell us what role that stress and mindfulness play in someone’s mental health and wellbeing or wellness?
Brian Luke Seaward:
Sure. so I like to break things down into short-term and long-term, and what we typically say is that in the short term for survival purposes, stress actually is good. It helps you survive, you know, the problem, the threat, and short-term increases heart rate, increases breathing, increases sweat response. Sometimes your voice goes up, but this doesn’t last very long. You can’t live like that. And so ultimately, we, we go back down to a lower state of being hopefully at homeostasis. But the long-term effects can be problematic with stress that persists, because what it does is it creates the definition of wear and tear of the body. It really causes havoc. And one of my favorite definitions or explanations about stress is that the body becomes a battlefield for the war games of the mind.
Brian Luke Seaward:
If we don’t learn to resolve stress, then it’s going to have an effect on our physical body. And if we already have a problem, a situation like Parkinson’s, then this is going to exacerbate it, I think the research is pretty clear on that. You know, I can pick a number of diseases, but let’s just focus right now on that one. This is going to cause more neural stimulation. It’s going to cause more problems with the heart, the cardiovascular system, the immune system, we could spend hours on this one, too. Back when I was in college learning this, I was told that the association between stress and disease was about 50%. And that was a very, very liberal estimate. Today, the experts are saying it’s more like 90% and that’s a conservative estimate. And then when I learned this Polly, that the cortisol, that primary stress hormone, and there’s lots of them. We have this cocktail going through our body as we get stressed out, but cortisol is a big one.
Cortisol when it gets done with all of its responsibilities, for fight or flight, which is to help increase blood pressure, heart rate, and even the glucose and free fatty acids. It does all kinds of stuff. It’s actually, cortisol can be your friend in the short term. In the long term, it destroys white blood cells. I heard that and I was like, why isn’t this headline news? Forget Kim Kardashian. This is important stuff. And so the long-term stress basically can shut down the body or certain parts of the body, certain systems. You know, and I go back to this this quote from Albert Einstein, who says you can’t prepare for war and peace at the same time. And the same thing can be put back onto the human being, is that we can’t be breaking down the body and rebuilding the body at the same time. You know, back in the sports lingo, we tend to use the term anabolic, to build up, and catabolic, to break down. Well some of the people who are in the field of stress and physiology like Bruce Lipton says you cannot be engaged in relaxation if your mind is turning out all kinds of stressful thoughts to where your physiology is having an effect on your immune system. The two are not compatible. One has to be turned off so the other one can actually do its work.
Polly Dawkins:
One of the questions from the audience is would you be able to share one or two mindfulness practices or techniques that our audience could try on their own?
Brian Luke Seaward:
Sure. You want to do that now? Or do you want to wait, maybe like closer to about the last 10 minutes or so.
Polly Dawkins:
Sure. Okay. Let’s hold that one for the end, let’s go back to another definition, which is resilience. That’s another one that really has been gaining popularity. Tell us what resilience means and what that looks like.
Brian Luke Seaward:
I’m smiling because this too is a buzzword. And you know, next week I fly out to do a gig to talk to the military and they use that word a lot. And they said that don’t use that word when you’re here. We’ve heard that enough. And so I want to use the word adaptation. I was like, don’t be on hand, but let me go back to some definitions here. Cause that’s a really good place to start. So first of all, I got to tell you that there is no agreement on what resiliency is. Everyone seems to have their own take on it. And I have to laugh because I’ve done several presentations. And some people say there’s three principles of resiliency. And some people say there’s seven steps of resiliency. And some say there’s 14 aspects of resiliency and I have to laugh because the numbers keep going up. But here’s some definitions. I’m going to read these to you because I don’t have it memorized, but I like, there’s two of them I want to share with you. The power or ability to return to the original form, position, et cetera, after being bent, compressed, or stretched. To be elastic. And how about this one? The ability to recover readily from illness, depression, adversity, or the like, to be buoyant.
So those are just two definitions. There are hundreds of them, but I will tell you right now that there’s no one formula for resiliency because everyone is so different, and everyone’s challenges are so different. And so you know, before the term resiliency ever became popular, I coined an expression called muscles of the soul. And when I asked these people who had been through hell and back, how’d you do it? They would say things like it was my sense of humor. It was my sense of patience. It was my sense of forgiveness. It was my sense of optimism. And as I heard these people describe these aspects of what got them through hellacious experiences, not just, you know, one day, but like, you know, decades. I thought to myself, these aren’t gifts for a chosen few. These are birth rights for everybody. We all have these.
And so if I could connect some dots here, I think that resiliency is the muscles of a soul. The things that we have innately that help us get through one step at a time, one day at a time to navigate toward what Joseph Campbell called the return home, the return to homeostasis. And that brings in this idea of the hero’s journey, which everyone’s on. And I want to tell you that everyone who’s listening is definitely on. And I also want to put a shout out to the caregivers because I know there’s a lot of people in the audience here who are taking care of people, loved ones with this disease and you too, I want to say, thanks, but you too need to to honor yourself with self-care and this aspect of stress management and resiliency as well. So I give talks on resiliency and I thought, what can I possibly say that would have a lasting effect to the audience where they walk home and they get it.
And so I came up with this and then of course, Reba McEntire stole this and sang a song, but I’m going to call this of resiliency, the backbone, the wishbone, and the funny bone. Now I tell you this because a lot of people think of resiliency as being the ability to persevere, to endure the hardship. And yes, that is part of it, but it’s not just stamina. It’s not just strength or courage. There’s also this idea of hope, faith, vision, insight, that adds to this, it’s not just a physical means. And then of course, I got to tell you Polly that everywhere I read, every book I read, every person I talked to said, you got to include humor. Your funny bone is so essential. And can I just tell you a little story? It’s not about Parkinson’s, but I think your audience is gonna be able to relate to this.
I hope so. So I was asked to give a talk on the healing power of humor, which is, I’ve given this talk in the white house, to Johns Hopkins medical school, to Mayo clinic and stuff. And so I was asked to give this talk to a bunch of cancer patients after their dinner. It was like, I was put down as the entertainment and I was like entertainment. I’m not a comedian. So, but I pulled it off. Everyone loved it. I thought. Until I went to the back of the room and this woman who in a wheelchair said to me, your talk, wasn’t funny. And I said, oh. And I just grabbed my stuff and I slowly kind of walked away. So I see this woman a year later, about 500 miles from where I last saw her. And I know it was her because she had the same yellow wheelchair with the basket in front.
And she comes to my presentation, and it was an all-day conference. And she comes hours, an hour early and she wheels up to to where I’m getting ready with my place here. And she says I want to ask if you would grade my homework and I gave everybody in the audience, I’m going to give it to you guys too, a homework assignment. And that is to build a tickler notebook. I want you to start looking for funny things, funny jokes, JPEGs names dear Abby letters, Dave Berry columns, something look for something funny every day, that you can put this notebook. And the research shows from people like Norman Cousins that not only do we got to take responsibility for our own health, but we need to actually focus our direction without blinders on, we need to actually look for something like this in this case, look for something funny and the story is he actually got better doing humor therapy.
So I gave everyone that night, this assignment, build a tickler notebook. I give it to my college students. I give it to a corporate executives. I give to lawyers, I’m going to give it to everybody listening here for the victory summit, start building a tickler notebook. And so this woman wheels up and she says, would you please grade my notebook? And I said, well, sure. I said, I think you’d an A. And this thing was at the size of the LA yellow pages, this thing was huge. And she had gilded pages. I mean, it was amazing how much time she put into this. And I said, you definitely get and A. And she goes, no, take it to your room tonight and look through it and then give it to me tomorrow because I want you to grade it. And I said, okay.
And then she said to me something, I’ll never forget. She said, when I first met you, I thought you were an idiot. Okay. And she said, but then when I drove home, I realized maybe it’s not you, maybe it’s me. She said, I’ve been curmudgeon ever since I’ve been diagnosed with my disease. And she said, I know Cuba is not going to cure me. She said, but you know what I said, what? And she said, I’m no longer a curmudgeon.
Polly Dawkins:
That’s beautiful. That’s wonderful. I was thinking we should probably have you do some standup here for us, to help us with some humor. Let’s get back to stress. One of the things, one of the issues with, with Parkinson’s is dealing with just the uncertainty of how a day is going to be, what the next month is going to be, what the future, how you compare yourself to others and how they’re doing. How do people make peace? Or do you have any suggestions of how people can make peace with uncertainty and the stress that’s around that?
Brian Luke Seaward:
Yeah, that is a great question. And we’re definitely in times of uncertainty right now. And that’s, I think part of the landscape of stress is the fear of the unknown. And like I said, we got lots of those cards being tossed at us every day. But first let me go back a page to how I teach stress management to whether it’s a class or to an individual, or, you know, to an athlete or anybody. And the approach I take is both coping and relaxation, coping skills are those things that help us take a better perspective on what the problem is and work toward a resolution. So it used to be people who just taught stress management and basically is relaxation techniques, but they kind of forgot the whole coping part. And so there’s two types of coping skills. You’re going to laugh at this ineffective, and effective. Ineffective are things which perpetuate stress. And they may seem like they’re good in the short term, like drinking and drugs and all that kind of stuff. But no that doesn’t really help any. So I worked for the effective ones. I just want to read you a short list of some of these, because then will come back to your question.
Polly Dawkins:
And we’ll try to capture those and then notes for people on the side. So, tell us your list.
Brian Luke Seaward:
The first one is reframing, and reframing is trying to change the perception so we’re no longer threatened by it. So reframing, it’s not going from the negative, the positive it’s actually seeing the whole picture. It’s not just a delusional Pollyanna approach. It’s saying, yeah, this is bad, but here’s something to balance it out or to try and even it out just a little bit. So reframing has taken a new, fresh look at it. Another one is humor. We mentioned that. Gratitude, I loved how Connie and Davis mentioned that. Prayer is a big coping technique for a lot of people. I’m really into journaling. I love journal therapy, just writing your feelings down, but the new one is called poetry therapy. And sometimes just putting your thoughts into a verse and they don’t have to rhyme. But the thing about poetry therapy is I love this expression that says, it says it makes order out of chaos. And you can do that with words, and it begins to layer to other parts of your life.
I’m a real big fan of creative problem solving, which is trying to look for options into the problems that we have. And if we don’t have any options that we get painted into a corner, so I’m a real big fan of that. And then of course I got humor therapy twice. There must be a reason for that. Anyways, those are different ways to which time management is a real classic. One resource management is very, very important for people with all kinds of, of challenges. But those are some things how we basically take a look at the situation and then we change the perception. So we’re no longer threatened by it or minimize the threat if you will. Now, the other side of the coin is relaxation skills, and that would be things like yoga and breathing and mindfulness and Tai Chi and even going out in nature.
Exercise is a big one. I know you guys had mentioned that. So what we can do to try and intercept the stress response, you know, I know I’m gonna point at my neck so that the perceptions don’t turn into chemicals and wreak havoc on our body. So how do we deal with uncertainty? This is the million-dollar question, if not the trillion-dollar question. But the first thing I want to say is how can we begin to shift the, the perception so we’re not threatened by it and let’s go with some, some questions. Well, what things are we certain about? Well, we’re certain about ourselves that, you know, we have our mental faculties, we have a sense of humor. We have family, we have resources, we can access. Those things are essential to gather in terms of the knowns.
And then the know that we can access them at will if we can, or when we can. The other part of it is the uncertainty is things like creative options. Okay. So there’s a lot of things we don’t know about there. What can we actually plan for with options so that we’re not painted into a corner? Which a lot of times we can feel like we are, you know, this whole bit about isolation that alienation with lockdown and stuff.
So those are some aspects too, but the most important thing I can say right now is first identify the levels of anxiety. Are there anxiety feelings there and think to yourself, okay, what kind of fear is this? Is this the fear of failure? Is it like, I’m not doing what I should be doing?
Is this a fear of the unknown? Is this the fear of rejection? There’s lots of different ways we can kind of identify this. And then you know, so much of the psychology of stress says, yeah, but is that really a fear? I mean, are you really being rejected? And then you go through this whole process and realize, well, not really. So begin to bring the fear down to size and then realize that, you know, maybe it’s not so bad after all. And I don’t want to make light of this. The last thing I want to do is spout rainbows and unicorns, because I too, I’m from Boulder. But I do want to say that it’s important to grieve a situation and obviously with a disease like this, this is definitely something to take very seriously, but at some point, we want to move out of the grieving process into the adaptation process.
And that’s part of the working with the unknown too, is how do we adapt to the changes that we’re encountering? And we can all do that. You know, that’s part of Cooper Ross’s death and dying model. You know, first there’s a denial. Can’t believe this is happening to me. Then there’s anger. We want to skip down to acceptance and then adaptation. And we’ve all actually had a lesson in adaptation with this COVID thing, but there’s layers upon stress for everyone. And so what I want to say is a quote that I learned from this woman who survived the concentration camps, which to me is like the epitome of ultimate stress. I know there’s a lot of bad ones out there, but that I think takes the cake. And she said, giving up is a final solution to a temporary problem, that beautiful.
Polly Dawkins:
Do you have ideas or strategies of if we’re stuck in that grief or loss or the sort of bad or even anxiety, how to move to adaptation?
Brian Luke Seaward:
Yeah. One of the things that we recommend is to do a little grieving ceremony. Write down how you’re feeling and why you’re feeling this way. And then it may be that, you know, just like when we have a funeral for someone who has died, we have a grieving ceremony for the loss of a situation. So it may be that, one of the favorite things I hear from my students and participants in workshops is to plant something like a tree. And that tree becomes a symbol as it grows. That’s a symbol of yourself. And again, we got to prune it there, or maybe we take some fruit and stuff, but or maybe it’s a garden, maybe it’s, you know, planting bulbs, perennials in a garden, but something where we take the feeling and as best we can do something with it creatively.
And so I know one person told me that they, they lost their child to cancer, and she began to go through photos and begin to do poetry. And she put together this book, that was her grieving. But it was a celebration. And that’s what I want to say that this is, we begin with the what I call is a BMW, Bitch, Moan, and Whine. And you’re right. I mean, we all have to do that, but at some point we want to turn that into a neutral and then get to a positive. So turn this into some kind of celebration. And that may sound odd for people who are hearing this, who are just have just been diagnosed, like celebrating what the death of my life. I don’t think so. That’s okay. Take it, take a moment to grieve where you are right now. And that’s perfectly normal. It’s perfectly natural. And I would be questioning the fact if you didn’t do that because that’s part of the process, but what we don’t want to do is get caught up in perpetual grief because then we get caught in the Whirlpool of negativity. And so that’s, like I said, that’s the victimization. I love the expression that says once a victim, twice a volunteer.
Polly Dawkins:
Yeah. We see that folks who do best living with Parkinson’s are those who are able to somehow get out of that stuckness, that grieving process and move on and and then share their stories of how they’ve done. So, Lorraine Wilson in our audience says, I have written on everything you listed in your managing stress, a creative journal, one, a holy moment fascinates me. What has been your experience when you lead a group through this writing, this type of journal exercise, or journal entry?
Brian Luke Seaward:
It’s like, we all have been taught how to fly. Oh, thank you so much. You’re the one who bought the book. Okay. Yeah, Holy Moment. Well, I think in there, I may have mentioned the fact that my dad was dying and I ended up going to a dolphin place. I think it was SeaWorld. And I got hugged by a dolphin, how strange is that, I was like sitting here crying on his dolphin, an empty pool tank and this dolphin comes out from nowhere. And then I just felt compelled to hug it. That was a holy moment for me. I got to tell you I’ve since had many, many more, but when we do that as an exercise, when people share them, it’s almost as if you take off all these wet clothes and you just float or you fly.
I mean, it’s a magical moment when we realize that this is just a costume, we’re so much more than that. And thank you, I got to come back that day. I gotta put that on my Facebook page, holy moment. And we need more of those. And, yeah, that’s magic. I got to tell you a little story here, I can go on forever about this, but I take people on group trips to Ireland and the very first year we were there, we go for summer solstice because that’s one of the Irish Celtic holidays, if you will. More the lights. If you’ve ever been to Ireland, if you haven’t seen it you know, it’s a lot of clouds. I mean, like it’s a lot of rain. That’s why I call it the Emerald island.
And so we’re there for like four or five days. Nobody sees nothing but clouds the whole time, but we go to this place called galleries oratory, and we do this ceremony for summer solstice. And the song that his sung typically is here comes the sun. We did it at 10 o’clock at night. And we’re in this little tiny stone church in the Dingle peninsula. And all of a sudden, the clouds break open and the sun comes through, and this door is made specifically for this day and the whole room lights up and our tour guide, he says something magical is a foot. And I realized that the average used the term magical to mean spiritual. And so a holy moment definitely is a spiritual moment.
Polly Dawkins:
That’s great. Love that. Good. A couple of other questions here. I’m going to, Dr. Pontone came on here. I’m going to put his video off cause he’ll be up next. Another question we had said, let’s get back to some strategies and some practices. So perhaps you could chat with us about some strategies for either mindfulness, we’ve talked about journaling, we’ve talked about moving out of grief, but do you have any other strategies that you might suggest for folks, whether it’s stress strategies or mindfulness strategies or techniques, something people could walk away with today and say, I’m going to do this.
Brian Luke Seaward:
Yeah, I like to everyone right now, they could, if you got a piece of paper and pencil draw a big circle and that blank piece of paper in the back of your book, and then draw a line north and south, east and west and make one quadrant body, the next quadrant emotions, the next quadrant mind, and the next quadrant spirit. So we’re going to try and do something in all four quadrants. And I would like to encourage everyone to visit this Mandalah every day. And so I’d like you to have you write in the quandrant for the body. What are some things you can do for the body? Now, maybe it’s exercise like Davis mentioned on a medicine ball, maybe it’s going for a walk. Maybe it’s a yoga. Any kind of physical activity put in there because what this is going to do is you’re gonna have to have a sympathetic rebound effect. That’s gonna calm the nervous system.
Polly Dawkins:
That’s it. I want to do a visual for folks. This is really crude. I don’t even know if you can see it, the four quadrants. So can you repeat it again?
Brian Luke Seaward:
Mind, body, spirit, emotions. It has one of those aspects of it. And so, so in the body, we’re going to write down some activities that we can do for bringing the body’s nervous system down to more homeostasis. So maybe it’s exercise, hopefully it’s exercise of some kind. Maybe it’s a yoga, even if it’s like chair yoga, which is real big right now. And if you can’t do chair yoga, you can do eye yoga. You know, we did Connie and Davis did facial expressions. You can do that with your eyes, upper right, lower left, like that. So yoga. Tai chi. You can actually do chair Tai Chi too. That kind of thing. So you get the idea. I know at time’s short here, so I’m going to hopefully cover all four of these. In terms of emotions, let’s put down a humor. And I’ll give you again, the assignment for the tickler notebook, try and find one funny thing a day.
And I guarantee if you keep that mindset, you’re going to find more than one. Okay. Also in emotions, and this is just me, so if you don’t like, my ideas just don’t use them, but music to me is very emotional. So I make a new playlist. In fact, I have one called above the fray, songs that lift me up, raise my spirits and the song happy is on there. The song on from, oh God what’s that one, I’ve forgotten now, but they did a video with all the old-fashioned movie scenes there, it’s about dancing, uptown funk. So maybe like 10 songs make a new playlist of songs that lift your spirits.
Okay. So, and poetry can be emotional too, if you want, you can do some poetry therapy there, maybe like do a poem, not every, but you know, just maybe like once a month or something like that. The mind, now let’s talk about mindfulness. The mind basically is how well we perceive information, how well we process information and how well we communicate information. So it’s all about information, at least in some perspective there. So I like to actually sit quietly, sit still and just focus on my breathing. And we did that earlier today with, with Connie and Davis. This is one type of meditation, mindfulness meditation, to be present moment with your breath. Some of you may have heard the term energy work and that’s where and Polly, I can send this script to you and you can post it one.
It’s where you actually just imagine that you’re holding a Nerf ball just made of light. And you just focus on that. And then you sometimes when I first learned this, you may have noticed that I don’t have any hair. When I first started this, I had sod that I was trying to make grow back over my head. I’d bring it over my head. It didn’t do much, but my skin looked really good. Anyway, so that’s another example of mindfulness. Sometimes just taking a piece of paper like journaling and just writing down ideas that come to your head so that you don’t get distracted and distractions are the Achilles heel of mindfulness. Think to yourself, I just want to be the present moment. And then all of a sudden you get an alert on your cell phone and, you know, you see the world’s going to hell or something.
By the way, we do a whole talk on digital toxicity, but we’ll save that for a different day. And then spirit. Now, a lot of things with spirit, you may say, are tied to emotions. Humor is, is again a very spiritual thing, not sarcasm I might add, but but by the way I learned the word blessed, is, I’m sorry, silly is another word for blessed. It’s a derivation of the word blessed. So if someone says, don’t be silly, say I’m going to be silly. Prayer can be in this category. I like to be a nature. I go to Rocky Mountain National Park and I, with my little handheld hummingbird feeder, and I get hummingbirds to come to my hand. That’s a spiritual moment. That’s a holy moment. As you mentioned earlier, to me, nature is definitely a part of that.
So I do photography. Photography brings me into a whole new realm of the spiritual realm. And I can, I’m thinking right now, problem solving, okay. If I had tremors, how can I do photography? One thing you do is you could set up your camera on a tripod to where, you know, you’re going there are going to be things, you can get a remote and just press the remote. So you don’t all have to do is hold a remote. You don’t have to hold a camera and think that, oh my God, it’s blurry. There’s ways around this. You can be creative around this. And so photography for me is a very spiritual experience. And if you want, you can find me on Facebook. I tend to post my photographs on Facebook. I just saw a Bobcat yesterday, amazing, as a spiritual experience, too. So lots of ways in which we can do. Singing is as a spiritual experience for some people, some music is somewhat like that.
Creativity. I’m a real big fan of using the creative process as a spiritual process. And my wife and I make these photography yearbooks. We go through our, all our photographs in December and make a a Shutterfly or apple photography book. So being creative is an idea too. And when you begin to do this, then it takes your mind off of things like the politics or global warming or whatever else, personal issues, but it just kind of gives your body a chance to relax, to find that sense of homeostasis. And again, I’m not spouting here rainbows and unicorns. I know that that this is a very serious health challenge, and my heart is out to you, and you are my heroes. On the same token, we don’t have to wear this as a badge of victimization.
Polly Dawkins:
I’m not sure how we could end that on a better note. Really, really lovely. Thank you for spending time with us today and hope that you’ll learn from being a part of our community and come back and join us again.
Brian Luke Seaward:
I’m delighted. And I’m honored. And send love and compassion out to everybody. And thank you so much for being bright lights to the planet.
Managing Depression and Anxiety in Parkinson's
You can read the transcript below. To download the transcript for “Managing Depression and Anxiety in Parkinson’s,” click here.
Polly Dawkins (Executive Director, Davis Phinney Foundation):
I would love to introduce you to our friend Dr. Greg Pontone. Dr. Greg Pontone is an Associate Professor in the Departments of psychiatry and neurology at Johns Hopkins University School of Medicine in Baltimore Maryland. Dr. Pontone is the Director of the Johns Hopkins Parkinson’s disease Neuropsychiatry Clinic which focuses on diagnosing and treating the neuropsychiatric aspects of Parkinson’s and related disorders. So, to start off iIm always curious uh with those of you who have spent your life really thinking about what we care passionately about, how did you get into this work? What drew you to neuropsychiatry and what we care about Parkinson’s in particular? Tell us about your journey.
Gregory Pontone, MD, MHS (Director of Parkinson’s Disease Neuropsychiatry Clinic and Associate Professor of Neuropsychiatry and Behavioral Sciences, Johns Hopkins University): Sure yeah. Well a lot of it was you know the people you know and work with. So I happen to be really lucky to work with Dr. Laura Marsh and she had a real passion for working with people with Parkinson’s disease and she was taking care of people clinically and doing research on the disease and I started shadowing her and then working with her and you know you just kind of fall in love with the population and then you know as I developed my own sort of scientific interests I began to see that many of the things we do in psychiatry cause neurological side effects and many of the things we do in neurology cause psychiatric side effects and I thought if I lived right here in this between land I might be able to figure something out that helps both sides and so that’s sort of been the basis for my clinical and research career.
Virtual Event: Mental Health and Wellness
Polly Dawkins:
That’s fascinating, how many people are there like you out there in the world that really focus on that inner section?
Gregory Pontone:
Yeah it’s a growing, I would say a growing handful.
Polly Dawkins:
So you’re really a trendsetter there.
Gregory Pontone:
Yeah and I had great mentoring and you know at a great institution so very fortunate and hopefully we’ll grow a few more to put out in the world.
Polly Dawkins:
That’s great I mentioned to you on on email last week… last time you were here a year ago you recommended an app for brain health and I downloaded that app a year ago and it’s called Elevate and certainly we’re not sponsored by this app, but I found it really fun to challenge my brain and try to get better at these games and it’s increasingly hard and frustrating and I just got reminded that it’s time to purchase another year’s subscription, I didn’t realize I’ve been playing this for a year and I usually do it before bed which is probably not the right time to do brain training so my husband will say Polly, turn it off, and I’m like I’m doing my brain training, I gotta do it before bed. So I would recommend to folks in the audience if you you know, 40 dollars a year is in your budget and you want to do some brain training that’s a fun app to do, so thanks for that recommendation last year. So let’s start off sort of ground setting for folks and getting us onto the same understanding of this topic of mental health, what does mental health really mean?
Gregory Pontone:
Yeah so you know there’s probably a number of definitions but the way I like to think about it and it’s consistent with the world health organization’s take on health in general is that mental health is sort of the optimal state of well-being, not just the absence of disease, not just the absence of depression or anxiety but truly sort of living at the highest quality of mental and emotional life that you’re capable of.
Polly Dawkins:
Interesting, I don’t know if you are our expert to answer this question but we hear the difference between wellness and well-being, do you have any thoughts on that, on those topics?
Gregory Pontone:
Yeah so you know it is one of those sort of words that I think is becoming more important and you know more mainstream but I like to think of wellness as a verb and it’s sort of the active pursuit of activities, a lifestyle that leads to an optimal state of health.
Polly Dawkins:
Got it got it. So when somebody is optimal health or mentally healthy, what does that look like, what does that mean?
Gregory Pontone:
Well you know we’re all um dealing with things in our lives right there’s social dilemmas, there’s diseases, there’s you know all sorts of pressures on everyone and so mental health is the ability to sort of manage and cope with whatever you’re saddled with, you know, and then people with Parkinson’s you know they’ve got already a sort of a big wagon to pull in addition to everything else all the rest of us deal with and so you know achieving mental health and wellness really has to be an active pursuit of managing these things and making choices that lead to the highest quality of life attainable.
Polly Dawkins:
Interesting. The people who talk about mental illness, so on the flip side of mental health tell us a little bit about what is mental illness then?
Gregory Pontone:
Yeah I think this is really important especially now in the age of social media when I think people sort of use certain terms casually, so you don’t want to over pathologize things, so for instance, you know it’s normal to be depressed or sad when someone dies or when something really bad happens. It’s normal to be anxious when you’re under tremendous acute stress so many of the things that we experience in day-to-day life have the same names as some of the disorders that we treat. The difference is disorders are a state that’s persistent usually or has at least a longer duration than a transient emotional change and leads to dysfunction, an inability to function as you usually do and I think it’s really important to recognize that while external stress and situational events can trigger these emotions and maybe even trigger an episode of a major depression for the most part mental illness is biological, just like you know cancer or thyroid problems or diabetes, it’s just in a you know different organ in the body, you know, most likely the brain, and so that’s the other important thing is that we really have to embrace the idea that you know the mind and body are one. So how you take care of your body and we’ll talk about this more I’m sure as as this interview goes on but you really have to take care of your body for your mind to function optimally and if you take care of your mind, your body will function better as well and that sort of transition and that’s sort of what I told you about the start of my career is I thought geez you know if you handle your emotions better, you perform physically better and vice versa and there’s many examples of that now.
Polly Dawkins:
Interesting so let’s let’s talk a little bit more specifically about Parkinson’s. What are the most common mental health issues related to Parkinson’s?
Gregory Pontone:
The big two just in terms of prevalence are anxiety and depression. At least half of people who suffer from Parkinson’s will experience anxiety and or depression over the course of the illness. Polly Dawkins:
Perhaps we could dissect that a little bit for our audience, what’s the difference or tell us a little bit about what is depression versus what is anxiety?
Gregory Pontone:
So yeah, that’s a great point, so these are just general terms. So let’s start with depression so depression is really a syndrome, it’s a collection of symptoms that usually occur together and then as I mentioned result in dysfunction and inability to sort of live optimally and you know complete your day-to-day tasks. And so for instance a very common collection of symptoms in someone who is depressed would be a lack of the ability to enjoy things or a diminished ability to enjoy things. We sometimes call that anhedonia. Sometimes people have disruption of sleep, most often, that’s an inability to fall asleep or stay asleep so insomnia, but very occasionally people will have the reverse, they’ll have hypersomnolence where they sleep you know 15 16 hours out of the day they’re always in bed. That’s sometimes even called an atypical depression. So disruption of sleep. Disruption of appetite is also very common so people will say I just don’t feel like eating or if I do I have to force myself or I’m only doing it because you know my spouse says it’s time to eat. They tend to lose a lot of weight and again very rarely sometimes people will eat for comfort and again that’s a little more atypical, the majority of people will lose their appetite. People will have low energy when they’re depressed, they’ll lack initiative they won’t want to you know start any activity and even if they do after just a few minutes they’ll throw in the towel and and stop. Another symptom that’s a little more conspicuous is feelings of worthlessness or helplessness or even in severe cases people start thinking that life isn’t worth living or even contemplate harming themselves and so that sort of collection of symptoms is usually what you’d see when someone has a major depressive disorder. Now you know maybe fewer elements of less severity might be what’s called a minor depressive episode so when we talk about depression that’s predominantly what we mean is that you either have a major or a smaller more minor depressive episode.
And same thing with anxiety except for it’s a little more varied. So when we say anxiety within that there’s very distinct syndromes. Some people have anxiety that’s always there, it’s literally, they’re always worried about something, it could be anything you know mundane things and sometimes they feel tense or have butterflies in their stomach while they’re worrying maybe even heart palpitations, but it’s constant, it’s a persistent, we call that generalized anxiety. And then there’s other people who as long as they’re not having an episode they feel pretty normal but then they can have sudden sometimes out of the blue acute attacks of anxiety with physical symptoms, hyperventilation, palpitations, that we call panic disorder, and so, that’s a more episodic type of anxiety. And then there’s people who only experience anxiety in certain situations or context so for instance they’re fine when they’re just at home alone or with family members but if they go out into a social setting they become very anxious and sometimes they’ll avoid that the social context because of the anxiety it triggers and so, you know, knowing what type of anxiety or depressive disturbance an individual has can be very important.
Polly Dawkins:
So in your practice and experience what are some strategies that you’ve seen work really well to help with depression related to Parkinson’s. Yeah, the first thing is to recognize it, so it’s not uncommon at all not just in people with Parkinson’s but people in general will often say that they don’t feel frankly sad. So they assume they’re not depressed. It turns out that a fair number of people never have frank sadness but what they do have is that sort of lack of interest or lack of enjoyment in their usual activities. So what you’ll see is someone who’s not participating, having all these dark thoughts, probably some disruption of appetite and sleep, but not recognizing it because they don’t feel sad. So I can’t emphasize enough how important it is to first recognize the depression, because you’re not going to manage anything that you don’t recognize you have, so that’s probably the key and you know sometimes it’s you know family members or caregivers or spouses who come to us and not the person suffering themselves. The other barrier we sometimes see is even if they recognize it, they feel like it’s admitting weakness, you know, or that they’ve done something wrong you know or there’s a stigma you know I’m not crazy there’s nothing wrong with me. And again that’s the other reason why I would make this argument that just like a stroke is biological or any other medical illness diabetes is biological, in the majority of cases so is depression, it’s just a chemical change in the brain that if we manage it, usually with medications and other treatments it can get better just like you manage diabetes, and so, you know, you really have to sort of say okay I have this medical symptom just like any other I’ll recognize it for what it is and then engage in treatment and in the treatment that’s where we’re pretty lucky frankly, because I would say that we can do more for depression than we can for many of the other symptoms of Parkinson’s so if you can identify it, we can help.
Polly Dawkins:
That gives a lot of hope. So can you tell us about the causes of depression in Parkinson’s? Why does this happen for so many people with Parkinson’s?
Gregory Pontone:
Yeah, so that’s, in terms of the mechanism, we strongly suspect there’s some overlap in the cause of Parkinson’s, in the cause of depression and Parkinson’s and so I’m going to tell this to you in two ways that I find fascinating, and I hope will eventually lead to some solutions if we figure out why this association occurs. So one of the things we’ve noticed with both anxiety and depression is if they happen before Parkinson’s, this is before you even know you have Parkinson’s, people who have anxiety and depression are at an increased risk for Parkinson’s later in life, so the question is, is having a depressive episode or having anxiety somehow weakening your resistance to whatever’s causing the Parkinson’s? Sort of like an open window and then something flies in that causes the Parkinson’s so that would be more of a true risk factor right lowering the threshold for disease incidence or and this is the one that I think is equally likely, is this already the Parkinson’s underway in the brain? So you know Parkinson’s disease almost certainly for most people exists 10 to 20 years before they notice their first movement symptom before you see a tremor or bradykinesia, the slow movement, almost certainly the Lewy bodies and other processes of Parkinson’s are underway lower down in the brain and so we’re wondering now if in some people who have anxiety and depression before their motor symptoms, if that’s the same disease process, And so I think it’s very likely that the same biological and chemical process that ultimately results in the movement symptoms in some of these, in some people, is causing the anxiety and depression.
Polly Dawkins:
And does a person generally present with both depression and anxiety, or are they really, are they concurrent or separate or is it as individual as Parkinson’s is?
Gregory Pontone:
I like your last statement. So this is one of those situations where although we describe them as discrete entities, you know here’s anxiety and here’s depression, in general anxiety and depression co-occur quite often. And in Parkinson’s, it’s even more true. So what we always say is if you see anxiety in Parkinson’s or you see depression, look for the other one because they’re most often both gonna be there but just as you said it’s fairly individual too so I’ve seen individuals with only one and not the other, but the lion’s share are a little of both.
Polly Dawkins:
Interesting. Before we dive into questions from the audience, I wonder… I’ve heard this phrase from one of your colleagues, Dr. Maya Katz, she’s a movement disorder neurologist out in San Francisco and and she once said, you know you can’t just tell a person with Parkinson’s to pull themselves up by the bootstraps because they’re missing the bootstraps. You’ve got to do some therapies and treatments to help provide those bootstraps. Could you expound on that analogy and what that means to you as a doc?
Gregory Pontone:
I love that and I think it really gets to the point that this is not a foible, this isn’t a character weakness, this isn’t because you aren’t trying hard enough, you literally are lacking the bootstraps, you’re lacking the neurochemicals to maintain a normal mood and let’s be clear I’m not saying that you know that we’re not giving you a happy pill, you’re not going to be happy all the time you’re just going to experience the normal range of emotions that all the rest of us do. You just don’t have the capacity anymore because you need treatment and so I love that idea that the bootstraps are missing and that’s exactly what’s happened is either due to chemical changes or some other biological change you’re going to need assistance usually in the form of medications to maintain the normal range of mood.
Polly Dawkins:
So when let’s say somebody walks into your office and meets with you if that’s even a possibility, you’re probably pretty busy, how do you go about discerning when it’s time for treatment, when it’s time for talk therapy? How do you or how would somebody go about seeking that path for themselves?
Gregory Pontone:
Absolutely so finding providers has become increasingly difficult, simply because there are too few, mental health care workers at every level, you know, whether it’s you know therapists, social workers, psychiatrists, psychologists, all of them are great options, it’s just the the access because especially now with the pandemic I think utilization of these services has gone up. But when you can find them we think that doing more than one thing is important so I sort of think the traditional division is two arms of treatment. You know non-pharmacological and pharmacological is sort of one way to think about it and I think you should probably in most cases do both in tandem and so talk therapy, cognitive behavioral therapy, in particular, no doubt, that it’s effective for both anxiety and depression specifically in Parkinson’s. It’s been tested and proven again and again to be helpful. Medications, there’s tons of evidence for depression even in Parkinson’s specifically, anxiety less so, but medications for many people are very important and then one of my favorites and I think Davis you know himself would 100% agree, I don’t know if anybody’s seen him recently you know the people on the call but he is still a specimen and you know he hasn’t been you know riding professionally for a while, but exercise is one of the best medicines for Parkinson’s and it you know everything from slowing disease progression to helping day-to-day symptoms and oh by the way there are formal studies that it helps cognition and mood as well, and in Parkinson’s specifically. And so this is sort of the triad, you know get into therapy, get a good therapist or social worker, get the right kind of medication if you have a severe disorder, and then the thing you can do on your own is exercise and sleep well.
Polly Dawkins:
That is a lot to think about. I love that you bring in exercise because we hear time and time again for every single symptom of Parkinson’s, exercise is one of the answers, yeah. All right I’m going to turn my attention really quickly to our audience questions before I get into sort of other mood disorders and apathy because I think that’s another area that we’ll want to explore together. Could you speak to something called amplified anxiety? Is that a thing, could you answer that?
Gregory Pontone:
Well yeah there’s several ways that I think it can be amplified. I like that term in Parkinson’s specifically. So you know we talked about the fact that certain situations, so the classic example is that certain situations can trigger anxiety. So in people with a social phobia that sets it off and people with a specific phobia it can be something like a spider sets it off or heights or closed spaces. In Parkinson’s one of the ways that anxiety is often triggered and it may actually be a clue as to what causes anxiety in some people with Parkinson’s is dopamine fluctuations. So when people are taking their dopamine medications you know you take the oral medication and the symptoms get better as the medication is absorbed but at some point for most people they experience a wearing OFF. Usually it’s gradual so we say it’s an end of dose wearing OFF and not only can they feel their symptoms start to come back but sometimes they start to get a little anxious during that same interval of the dose cycle. And other people can have abrupt or sudden OFFs you know unpredictable OFFs and that is also associated not only with the return of motor symptoms but with anxiety. And so we do think that that is one of the ways that anxiety can really be triggered or amplified in people who either already have an anxiety disorder or people who don’t necessarily have anxiety outside of that fluctuation cycle and I think that’s a really particularly important type of anxiety in Parkinson’s. Are there things that you recommend? Let’s say it’s a wearing OFF of your dose or sudden OFF, are there things that you recommend or strategies to deal with that anxiety in the moment?
Gregory Pontone:
Yeah absolutely. So there was just a funded study of a a very specific type of cognitive behavioral therapy that was literally engineered for Parkinson’s and the particular types of anxiety that happens in Parkinson’s. So Roseanne Dobkin has a manual that has all these specific things in it and it’s literally helping people recognize the thoughts they have going into the dosing cycle and then when they start to have sensations of wearing OFF and then ways to allay their anxiety before it ramps up and gets out of control, so that’s one. The other is to you know identify these yourself through journaling to make sure that they’re reliably happening at a certain part of the interval, take that to your neurologist and there are some neurologists who can just work magic on you know getting better continuity so that you don’t experience the wearing OFF in the first place.
Polly Dawkins:
Got it. Do any of the sort of wearing OFF or rescue medications help with the anxiety symptoms?
Gregory Pontone:
For some people they absolutely do, this is sort of back to your statement of you know everybody’s a little different, but I would say the general trend is that many times rescue medications or just better tighter management absolutely provide relief. I mean in the best case scenario, the anxiety goes away in people who didn’t have other types of anxiety and this was the only anxiety they had, managing that ON/OFF fluctuation better sometimes completely alleviates the anxiety and others you get maybe just moderate improvement but it’s you know all helpful.
Polly Dawkins:
That’s great, great to know. Somebody has just asked going back to the the analogy or metaphor of bootstraps, somebody has just asked, how do I find those bootstraps to start exercising, to start to do social things, I know I need to, but I can’t get over that hump. Do you have any specific actions or recommendations?
Gregory Pontone:
Yeah absolutely I mean I think you know the first step really is sort of recognizing it and then assembling your team so to speak, okay. And there’s going to be a home team and there’s going to be an away team. The home team is the people around you that are going to help you re- engage with activities, socialization, and exercise. Okay and so that’s going to look different for every individual. So for instance if there was a leisure activity like walking or tennis or cycling that you enjoyed doing before, sort of re-engaging in that and ideally doing it in a social way okay so if you can do it with a group rather than individually that’s even better. We know that socialization prevents isolation which is a risk factor for depression and all sorts of bad health outcomes. So that’s your home team, just putting yourself around people who are going to help you and support your participation in activities. And then your away team is if you can identify a therapist or a psychologist or a psychiatrist, someone to sort of help you professionally with maybe specific types of talk therapy, like cognitive behavioral therapy or interpersonal therapy is another one that can be helpful. Medications in most people I think with Parkinson’s like I said I really do believe for many people it’s biological and so it’s not just that you’re not trying hard enough sometimes you need that missing piece.
Polly Dawkins:
For those folks who don’t have a specialist like you in their backyard what are your thoughts on telehealth or telemedicine to receive the types of support that you’re referring to.
Gregory Pontone:
Absolutely, so this is, you know, I think if there’s one silver lining to what we’re in the middle of here with the pandemic it’s that our facility with zoom and other types of telemedicine vehicles has increased dramatically and so I still prefer the in-person contact but I think if you don’t have ready access to specialists, telemedicine is definitely becoming more robust. Again you know talking about some of Roseanne Dobkin’s initiatives, she has a tele health intervention specifically for Parkinson’s anxiety and depression that seems to perform equally well to the in- person examinations and definitely has a broader reach in terms of distance.
Polly Dawkins:
Yeah great, all right looking at other other questions here. I want to wait to get to apathy because I think that’s a whole other area. Can you say something about the differences in medications for anxiety?
Gregory Pontone:
Yeah so this is really tricky. So I’m gonna tell you something, benzodiazepines, okay, 90% of prescribing habits in North America if you have anxiety whether you go to a primary care doctor, a mental health specialist, your neurologist, at some point almost everybody reaches for a benzodiazepine. They are absolutely something to be cautious of especially in Parkinson’s because they’re sedating, in certain cases they can increase the risk of falls and confusion. That said, nothing seems to work as quickly or as well for anxiety as the benzodiazepines. So just so you can hear some of the specific names that are very common ones that are used in Parkinson’s are clonazepam, lorazepam, and occasionally you’re going to see people use alprazolam. Now these are all different types of benzodiazepines with the key difference being their half-life or the duration that they’re active in the bloodstream and so it turns out that the longer acting they are the better they are and the less habit forming, okay, so that alprazolam which is marketed under Xanax is like playing with fire because if you were talking about which one you’re most likely to become dependent on it’s the Xanax. And then if you have anxiety that’s more persistent instead of just like a panic disorder you know you take one Xanax, alprazolam, you get three or four hours of relief and then it comes down and then you need another one and another one and you’re kind of back on the roller coaster whereas the other ones are long-acting. So I’m not necessarily saying these are the best medications to use in fact I would say use them only with caution and for a short duration but I’m going to tell you the truth is most people with anxiety have had these prescribed at some point. The ideal use is that they’re temporary while more long-term medications are used and these, here’s the downside of the long term ones, if you take a benzodiazepine you’re going to feel relief from almost any type of anxiety within 20 or 30 minutes. They work and they work pretty quickly. If you take the other type which are mostly antidepressants that are repurposed for anxiety. They can take weeks after achieving a therapeutic dose before they do their best work, but when they do work, they’re going to give you a more consistent relief of that anxiety. The problem is imagine somebody who’s having either panic or really high anxiety and you’re giving them this medication and nothing’s happening and nothing’s happening and nothing’s happening and you go up a little and nothing’s happening because it can take four to eight weeks for them to do their best work, weeks. And so what we usually do is a low dose of a benzodiazepine just to help people tolerate that four to eight week period until the long-term medication kicks in and then we slowly taper and ideally get rid of those benzodiazepines and that’s the best sort of option we have right now.
Polly Dawkins:
That’s an art and a science together, yeah. What about, have you heard about dystonia that’s been brought on by anxiety? I have seen almost every motor complication of Parkinson’s triggered by anxiety. You know whether it’s dyskinesia, dystonia, you name it and it’s uh not just triggering the onset but the severity can be influenced. We’ve had people who rate their dystonic pain as more painful when they’re anxious. And so you know this is sort of the you know I mentioned before it’s a bi-directional association between mental health issues and physical performance. We’ve shown that people who are depressed function less well physically, in eating, bathing, walking, speaking, for being depressed even holding their motor function comparable between two individuals. So the depressed individual is physically functioning less well than the non-depressed even if they otherwise have the same amount of Parkinson’s motor symptoms. And we haven’t demonstrated this is clearly yet in Parkinson’s but this is another big one, so you know in cancer populations like breast cancer, we know that if you treat depression in breast cancer patients, their survival is 62 percent, north of 60 percent better, than those who have depression that’s not treated. And so I suspect a very similar thing in Parkinson’s that not only is it going to help you function better on a day-to-day basis, I’ll bet there’s implications for survival over time as well. We haven’t proven that, we have proven in a longitudinal way that you can function better, that’s our work that was published about 10 years ago and we’re hoping to eventually be able to publish some mortality data too showing that treating the depression just like in cancer and other diseases has a global benefit for overall health.
Polly Dawkins:
That’s pretty compelling. Somebody else asks about compulsive thoughts, is that a mental health issue, is that a dopamine agonist issue? Tell us a little bit about compulsive thoughts, what that is, what to look out for and strategies.
Gregory Pontone:
Yeah so you know compulsive, you know, we again, this is one where the terms themselves can be a little tricky. So when someone’s compelled to do something that’s because they don’t want to suffer some consequence or they’re compelled to alleviate some consequence they’re already experiencing, whereas we also see some impulsive behaviors where people just can’t inhibit themselves and so you know not debating the term too much, but I would say that classically impulsive, compulsive, spectrum behaviors have been associated with dopamine agonists like pramipexol and ropinirole, but certainly have also been seen with other levodopa compounds as well, just not as commonly, but certainly with the agonist medications. Now that said, some people can have compulsive thoughts unrelated to their dopamine and that might be more truly an obsessive compulsive disorder, so usually that individual is going to have sort of this unwanted distressing thought that is repetitive and then they feel compelled to do something to alleviate the tension that thought is causing. So the classic example is contamination, right, you touch something and you’re worried there’s germs, so you wash your hands and washing them once isn’t good enough, so let’s count let’s wash them ten times, you know and so that’s the classic. And what I see in Parkinson’s is less that than impulsive, but I’ve seen both and I think and again it’s still an area of debate but I think the one that’s more sort of consistently linked to Parkinson’s is the impulsiveness and that’s another one where sometimes people don’t recognize the link, or they’re embarrassed, and so it oftentimes doesn’t come and get the attention it should.
Polly Dawkins:
Sure sure. Do you, are there strategies that you would recommend if somebody is seeing that in their partner or feeling in themselves even if it has shame around it? What would you recommend somebody do?
Gregory Pontone:
Yeah, this is going to be more of a global recommendation that will address that as well, I encourage, I’ll tell you, you know, if you have a visit with me, I want to meet your family. So you know, and I bill the same, so if you come and you come with your family I should give a family discount because that’s more resources for me. I would really encourage you to go with a spouse a family member whoever is closest with you to your visits in general whether it’s your neurologist or your mental health worker because then you know then you can really have an open conversation about the things that are going on and sometimes it’s not even that you’re trying to hide anything you might not recognize it as a problem. It might not feel problematic to you and so it also adds perspective and so I think my global recommendation is that in general you should always you know have someone attend the visits with you, but especially if you suspect that one of these impulsive or compulsive behaviors is occurring, you definitely sort of need an additional perspective or some kind of you know collaborative input.
Polly Dawkins:
Great thanks for that. Let’s, this is a topic you may not want to touch on, but there’s a question that we get so often as about medical marijuana or CBD to treat anxiety or depression and you’re welcome to punt on that if you don’t want to answer that.
Gregory Pontone:
Well no, let me, I think you actually have given me an opportunity and so let me tell you the way I think about medical marijuana, cannabinoids of every variety, alternative treatments, you know what I guess what’s called alternative treatments or naturopathic treatments or any of that. I’m completely open to all of these things. I think at this point if one way if one little narrow way was the way to solve all problems we’d already have all the answers and we clearly don’t, so I think we have to keep an open mind. But I think all treatments, anything that I’d expose my patients to, has to have the same standards for safety and efficacy, I would not give my patient anything that I wasn’t confident had passed a certain standard of safety and because I don’t want to waste their time. I have to have some indication, some evidence of efficacy, and so whether it’s the most sophisticated unpronounceable pharmaceutical compound known to man, right, that’s in latin or some other language I don’t know or if it’s blueberry powder that some you know five thousand years ago they found in China helped with something, we have the same standard and let me tell you I think what’s called, you know, alternative has an equal chance of being helpful I just want the same level of scrutiny. I mean I can tell you exercise, I got to tell you, you can name 10 drugs, and I’d rather have exercise and there’s better evidence. You know, so this is one of those things where I just think we have to have a standard for safety and efficacy and an open mind because I guarantee you there’s things hiding in plain sight that we just haven’t tried rigorously, to answer some of these questions, so getting back in a long-winded way to your medical marijuana question. I am confident there are so many sort of native cannabinoid receptors in the brain, that if we can learn how to use these molecules or derivatives of these molecules appropriately, I guarantee there’s some symptoms that will be helped by these type of compounds, but without this type of testing and you know rigor I worry that we’d expose people inappropriately to some risks. Polly Dawkins:
That’s a great way to answer that question. You brought exercise back into the picture. Aomebody has asked are there any particular exercises that you would recommend that alleviate the symptoms of depression or anxiety?
Gregory Pontone:
Absolutely, so if you guys will humor me, actually I have a little list of literature here on the screen in front of me on purpose because my goal was to say exercise till you guys were tired of hearing it because here’s what happens… we get people who come in and they say look I’m desperate what do you got, do you have anything new that I could give you and I go how desperate are you, and they go desperate, and I go desperate enough to exercise? It’s that important and I mean, you know, I don’t want to be a nuisance but this is one where we know it helps day-to-day symptoms slows down disease progression and helps almost every aspect of mental life and this gets back to that you know transition between emotional and physical life or mental and physical life. It turns out that if you have Alzheimer’s right now, one of the best things you can do for your cognitive health, for your brain health, is physical exercise and so in Parkinson’s specifically I think you’re going to be surprised when I tell you these numbers, because I was surprised when I looked this up. It turns out that right now there’s been 18 high quality studies of aerobic exercise so cycling, running, swimming, anything that gets the heart rate up, specifically in Parkinson’s right and they’ve been shown to help specific types of cognitive functioning, like executive function, which is one of the biggest ones affected by Parkinson’s, it helps with language. You know people always tell me with Parkinson’s they say I’m having trouble finding words sometimes. Turns out exercise helps a little bit with finding words and I mean these are things that I mean you don’t have to win a ton of medals like Davis did, you know you just do the things you enjoy and get your heart rate up and you know maybe do it with friends and it helps and then, oh by the way, all these studies have also shown that it helps with depression, so you’re helping yourself mentally, you’re helping with the depression, so that’s aerobic exercise, you said what type? Turns out there’s been not as many, but there’s been a few studies I think three really high-quality ones that looked at resistance training. Okay, so you can do resistance training with weights, you can do resistance training with you know rubber bands, you know elastic bands sometimes, just your body weight and they’ve shown that that also improves executive functioning and attention, so cognitive improvement along with some mood and anxiety reduction. And then finally and this one’s a little more tricky because yoga does so many things I mean yoga is not just flexibility, yoga is a little bit aerobic, yoga is a little bit strengthening, turns out that yoga looks really good for anxiety and depression and it might also be that there’s that mindfulness element in yoga, balance and gait as well so I mean you name a type of exercise and it seems to have real concrete benefit in Parkinson’s both for the physical symptoms and the mental symptoms and so everybody’s got to be doing a little of this. And it doesn’t matter what, I always tell people whatever you enjoy is the exercise type to do at this point and if we change our recommendations, I’ll let you know, but find what you enjoy and start with that.
Polly Dawkins:
That complements exactly what Davis and Connie started with this morning. May I ask you to define, what does executive function mean? For audience some may not know what that term is.
Gregory Pontone:
Yeah deficit is, yeah that’s, let me tell you, we have Jason Brant is just retiring from my institution, he’s sort of this world renowned neuropsychologist, brilliant guy and he said you know if you ask 10 people what executive function is you’ll get 10 different answers right and you know the more letters they have behind their name the more convoluted it’ll be and so what I tell people is to the best of my ability to understand what it is, it’s our ability to organize sequence and plan and so in a way it’s involved in almost every aspect of your day-to-day life you know to some extent and so what we do know is that it’s usually one of the earliest and most often affected domains or types of thought or cognition in Parkinson’s and so learning to sort of manage the changes as they occur is important and so people use calendars more often so even if you were never a person who used a daily planner or a calendar or a dry erase board with little check boxes that is a skill a strategy that you should start to implement maybe even before you recognize problems. That way it’s already a habit before you need it.
Polly Dawkins:
Got it. Thank you. All right back to a question about a depression from the audience uh can depression result from inadequately treated low dopamine states and can depression improve with better treatment of Parkinson’s?
Gregory Pontone:
Yeah so yes globally and I’m gonna give you some concrete examples here. So what I will say is that we just published some treatment recommendations, treatment algorithms for both depression and anxiety in Parkinson’s and our treatment starts with optimization of motor function, so to answer the end part of that question, absolutely. You want to have optimally treated motor symptoms renders your anxiety and depression more amenable to treatment and so that’s a definite. Now the direct link between dopamine levels and depression is a little in some people it’s really important and other people it might not be as important but there was a really great series of experiments back in the mid 90s. It was published, the first author was Miracle but it was Jay Nuts group out in the Oregon health system and Dr Nut has just I think he’s emeritus now but he’s a brilliant guy who did Parkinson’s research for many many years and he did these dopamine or levodopa infusion studies and he looked at everything from motor function and the kinetics of levodopa I mean really it’s groundbreaking stuff and it’s still incredibly relevant today and he noticed that if you gave people a levodopa infusion their mood got better as the dopamine went in along with their movement. So for many people with Parkinson’s there’s a clear association with their mood state.
Polly Dawkins:
Interesting. Y’all in the audience have got great questions thanks for for submitting them. We’ve got some more time. I want to get into the question that many people are asking about apathy and apathy seems to be such a troublesome symptom. Could you maybe help define what is apathy and are there some strategies that either care partners or people people who are experiencing apathy can can utilize?
Gregory Pontone:
Yeah, so apathy and depression have a pretty significant overlap in symptoms. Remember I said depression is is sort of a syndrome of many symptoms and so apathy has that anhedonia, that sort of lack of interest and pleasure as a central feature, but what it doesn’t have is you know when you’re depressed, you can feel guilty or bad or even suicidal right you have these negative emotions, the apathetic person is usually not the person coming to you to complain. It’s their spouse they’re like he only sits on the couch all day he doesn’t do anything I ask him to do stuff sometimes he’ll come along and then you know he doesn’t care and so apathy is really this sort of energic state where there’s no initiative good or bad right and the problem is is it probably happens in about a third of people with Parkinson’s and I think it goes unrecognized because like I said the person who’s apathetic isn’t complaining so unless a family member or someone close to them brings it to clinical attention, it’s unrecognized and I do think it’s fundamentally mechanistically different than depression in most cases. And I can tell you that for two reasons. One is it seems to happen in parallel with disease progression and the emergence of cognitive impairment, so I think there’s a bigger cognitive piece than a limbic or emotional piece with the apathy and two, and this again a lot of this is anecdotal but I think there’s a literature to support this, I’ve tried all kinds of antidepressants in apathetic individuals and antidepressants don’t seem to help apathy. So getting the diagnosis right, differentiating apathy from depression is really important because if you try to treat an apathetic person as if they have depression you’re not going to have much luck. What we have had luck with and this there’s formal, what’s called randomized controlled studies that support this, is that acetylcholinesterase inhibitors, cognitive enhancing medications like rivastigmine or donepezil have shown some benefit in apathy situations. And so that’s not an antidepressant that’s a different mechanism you know different molecule to help the apathy, so that’s shown some benefit in Parkinson’s. And then in some people usually after deep brain stimulation with Parkinson’s, dopamine agonists like pramipexol or ropinirole seem to help apathy in those cases but that might be more specific to the post DBS case but it’s definitely different than depression and requires different treatment, but is very common, maybe up to a third of people. It was you when you spoke for us in maybe it was up in Canada the last time we were together and you gave an example of apathy. It was a perhaps one of your patients who was a watching the baseball game? Can you tell people and so it brings to light what is apathy…
Gregory Pontone:
Sure and I hope that you guys appreciate that I learn as much from the people I work with with Parkinson’s and their families as I do from the book. So this was you know a spouse of one of my patients and she’s telling me, so this is the classic example of apathy, she’s telling me he comes in the office, and he tells me he’s fine, he’s got no problems, right, the world is is beautiful. And you know she comes in and says all he does is sit on the couch. She says the other day the power went out, he was watching the ball game, it’s the seventh inning, tie game, right, his two favorite teams and power goes out. When it comes back on the cable doesn’t reconnect so he’s just watching the snow on the television, sitting there on the couch and he didn’t even care enough to get up off of the couch and try to change the channel or reset this you know the cable box to get the game going. And she said well maybe he’s just being lazy I’m gonna wait and see how long it takes him to reset this thing and she says she waited an hour, she comes back he’s still watching the snow as contentedly as he had been watching the game. And to me that really just anchored what apathy, what the experience of apathy was like for the patient in the family.
Polly Dawkins:
Yeah and the effects on the family, it’s just so hard to watch your loved one not want to do anything.
Gregory Pontone:
Yeah something he loved, yeah absolutely. He used to, he was a you know paint his face type of baseball fan.
Polly Dawkins:
So how do you how did you or how do you coach the family member who’s saying this is a terrible thing because it seems as though that treatment for that person or therapy or something for that person is equally important as for the person that’s experiencing it, do you have strategies for the family?
Gregory Pontone:
Yeah so you know I think this is really important and this is sort of an emerging trend and treatment is not you know some people are more amenable to medication some people are more amenable to non-pharmacological therapies, some families are more involved in care and some are more removed and so I really think and this is why like I said I really encourage families to come to my meetings because I want to learn what works well for them you know I want to meet them sort of where they are and find out what works best for them and get to know them all and say well okay what would be the best way for us to implement this best evidence change to improve wellness and quality of life here and so I really do I think you got to get your hands dirty and roll up your sleeves and work with everybody who’s affected by the disease which is is more than just the patient.
Polly Dawkins:
Absolutely, thanks for that I’m going to go back to questions here. Why do you think resilience seems to be lower in people with Parkinson’s?
Gregory Pontone:
Well you know, I don’t know if I’d say that because you know, as a population, I do think this is maybe a little more, I hope it’s a little more individual specific and not a trend in the disease because I have seen some individuals I mean if you were to look at you know motor symptoms or disease severity across people I’ve seen people of equal severity and one is just thriving and the other one same symptoms having a completely different experience and that’s where I think resilience alters the equation because I’ve seen people where you think oh my goodness this guy’s got to be miserable or you know suffering or and he comes in and he’s happy and he’s telling me jokes and making me laugh and I think resilience is, it’s somewhat to do with temperament but I also think it’s a skill that people cultivate over life and importantly I think it’s a skill that you can cultivate at any point of life and I think it can change your experience of any disease, Parkinson’s, any disease and so I think learning that resilience is important and this is one of the things that we’ve really been thinking about is what is resilience and how can we teach and cultivate it and I think resilience is one of those things where it doesn’t necessarily have to come from a medical professional. This is something that can come from within the community and so I think sometimes shared experience is going to be one of the important seeds of resilience because you know I can tell you any textbook thing you want to know about Parkinson’s but I certainly can’t share the parts that people who are suffering from it can with each other and I think that’s where one of our hopes is that we can build or help facilitate communities of people with Parkinson’s, to cultivate things like resilience and wellness and strategies to not just get over the next symptom in the pile, but to thrive, to go beyond just getting rid of a symptom and really experience you know the highest quality of life you can.
Music and Rhythm for Parkinson's
You can read the transcript below. To download the transcript for “Music and Rhythm For Parkinson’s,” click here.
Polly Dawkins:
Welcome to Dr. Pantelyat.
Alexander Pantelyat:
Thank you so much for the introduction. I’d like to briefly talk to you today about the use of music and rhythm in Parkinson’s disease to improve physical and mental wellbeing. So for those who are interested we at this point have some social media information to share on Facebook, Instagram, and Twitter, but the traditional website is listed here and these slides, of course, we’re happy to share to anyone who’s interested. The vision of our Johns Hopkins Center for Music and Medicine can be summed up by the motto music as medicine, medicine for musicians. So our mission is to bring music and medicine together by making music and rhythm and important part of treating illnesses, such as Parkinson’s disease and by improving the health of musicians, the world round. So I will briefly speak to you today about how music affects the brain, give you a few examples of music-based interventions, and we’ll give you two slides towards the beginning and again, a recap at the end, that real action steps that you could take later today and tomorrow to try to improve your life using music.
And then I hope despite the late start, to take a few questions at the end, and here I’d really like to start with a quote from Shakespeare. “Music do I hear ha ha keep time how sweet, excuse me, how sour sweet music is when time is broke and no proportion kept.” And I should have asked this at the beginning, can everyone hear me? Okay? Can I get a thumbs up or someone?
Polly Dawkins:
I can hear you fine.
Alexander Pantelyat:
That’s perfect. We shall move on then. So this is a busy slide, but it’s one that I like to show at the beginning of my talks on music, because it’s a really useful in bringing home the point that music and rhythm impact so many different places in the brain all at once. So to frame this slide, I want to give you a real-world example that I hope will resonate with many people listening. Imagine hearing a song, or the song that you danced to at your wedding, you know, your main dance as new as a newlywed. So keep that in the back of your mind when we go through some of the areas that hearing the song will activate. So as any sound, music activates the basic auditory pathway, which is outlined green circles. And I should have said that what we’re looking at here is a side view of the brain and the left-hand panel, and a cutaway view down the middle of the brain with the front of the brain over here on the right-hand side and the back of the brain on the left. Bottom is at the bottom and top is at the top. So you have a side view of the right hemisphere over on the left-hand side, and then a cutaway view down the middle of the brain.
And I often get asked this, so I’ll say this, address it upfront. Although we’re looking at the right hemisphere for this slide, most musical processes are actually processed on both sides of the brain. One exception is pitch and melody processing, which is mostly in the right hemisphere, which is why they’re showing this right hemisphere here, my colleagues in this paper. So the green circles indicate the basic auditory pathway. This is what music has in common with any sound coming into the ear. It’s processed in the superior temporal lobe, which is over here. I hope you can see my pointer.
Then you have more complex elements of music that are processed in a more distributed way in a key area called the temporal plane or the planum temporale in Latin. And that’s in turquoise over here in towards the back of the temporal lobe. But you also have areas near the motor cortex and the frontal lobe. You have the superior temporal gyrus inferior frontal gyrus, which is relevant for language production as well. And so there are some overlapping areas in terms of understanding music as melody and understanding speech. And that overlap is very important and pertains to the ways that we could use music, to treat people with speech difficulties, then moving on to attention and working memory. We know that that is often a difficult thing. Loss of multitasking abilities, difficulties focusing and paying attention are part of Parkinson’s disease for many people.
So music, hearing music, and certainly making music can activate those areas that are dedicated in the brain to attention and working memory, focusing and keeping track of the music and its beat in time. So you have the dorsolateral prefrontal cortex and other pink circles over here in the inferior parietal lobe, the cingulate gyrus, then moving on, we have the episodic memory network in darker purple circles, again, involving multiple areas in the parietal lobe, angular gyrus over here, the middle temporal gyrus and the temporal lobe, and some key areas that Alzheimer’s disease affects. Alzheimer’s disease, as we know affects memory. And the precuneus and hippocampus are key hubs for memory formation. Those areas are known to be activated when we hear music. So when you hear the song that you dance to as a newlywed, you are going to have activation of these areas in the brain.
If it’s music that has a nice catchy rhythm and beat, or if you’re actually singing or playing a musical instrument, then you can be sure that you also have activation of your motor cortex and that’s in dark blue, not only motor, but also the sensory cortex. So imagine I play the violin and you know, I get almost real time feedback from the sensory cortex, which is over here on the picture as my fingers hit the strings. And that feedback from the sensory cortex tells me, I may need to adjust in a very minute quick way, the way that I place my fingers on the string and the fingerboard of the violin in order to produce the sounds that I want to produce. And so there’s this immediate, almost real-time feedback between the motor cortex, making a voluntary plan movement, then the somatosensory cortex.
And yes, both of those areas are activated by hearing music, particularly music that is danceable. And that has a nice, strong beat to it. Then last but not least, you have circles over on the right-hand panel that are in orange that involve processing of reward and emotion. And so here is where things might split. If you hear the song that you dance to as a newlywed now, and you have a happy marriage, 20 or 30 years later, you will have likely very positive pleasurable associations. And there will be areas in the brain in this network of reward and emotion that will be active, such as the nucleus accumbens experiencing pleasure and reward. On the other hand, it’s not one size fits all. The same song is not going to be experienced the same way in different people’s brains. If you had a bitter divorce five years after your marriage, and then you hear the song that you danced to as a newlywed, you might have a very negative associations with that song.
So instead of the nucleus accumbens, you might have the fight or flight center in the brain activated, that’s the amygdala over here. So I just want to emphasize that to say it’s one size does not fit all when it comes to music. But the argument here showing you this busy slide is that there is something from music for everyone that potentially can be gained. On the other hand, the challenge in terms of studying this as a researcher is, since so many areas of the brain are being activated simultaneously all at once, by listening to a given song, it’s difficult to separate the effects of music and rhythm on these distinct separate networks in the brain. So there is a hypothesis that was actually described about 10 years ago by Annie Patel from south California that really draws upon this overlap, I mentioned between hearing speech and processing music.
The benefits of music are driven by adaptive plasticity in the brain, in speech processing networks. And this plasticity occurs when the following conditions are met and the conditions are framed by an acronym O.P.E.R.A.
So O stands for overlap. As I already mentioned, there’s an atomical overlap in the brain networks that process the acoustic features that are used for both music and speech.
P stands for precision in the acronym. Music on average places much higher demands on these shared networks between processing melody and regular speech compared to speech in terms of the precise timing that you need to pay attention to. And so the fact that there is a higher demand for precision might mean that people who are exposed to more music during their lifespan may actually retain the ability to understand and process speech a bit better with age than those who haven’t been exposed to the same degree of music and there’s some evidence for that.
E in the acronym OPERA stands for emotion and as already mentioned, musical activities that engage the emotional network and elicit very strong, positive emotions. But I would add to this also very strong negative emotions, again, to harken back to the example I gave of dancing to a song at your wedding, and then having a bitter divorce than hearing the song after the divorce.
R stands for repetition, the musical activities that engage in this shared set of networks are frequently repeated. In other words, practice makes perfect. And if you don’t use it, you lose it. That’s the reverse, the inverse of that. So you have to repeatedly be exposed to a music-based activity or rhythm-based activity like dance in order to gain the rewards.
And finally, A stands for attention. The musical activities that engage the shared network are associated with focused attention. You got to pay attention to the music in order to reap the full benefits. Now, the idea that music can change the brain over time, this idea of neuroplasticity is not new. One of the founders of neuroscience from Spain, Santiago Ramón y Cajal wrote in 1904, and this is a quote,
“Everybody knows that the ability of a pianist to play an adaptation to a new work requires many, many years of mental and muscular gymnastics. To understand this phenomenon it’s necessary to accept that in addition to the reinforcement of pre-established pathways, [those networks that I showed you in a prior slide], new pathways are created by the ramification, [that means branching] and progressive growth of terminal dendritic and external processes.” So many decades before cat scans and MRIs of the brain were developed this neuroscientist in 1904, postulated that a pianist or somebody a singer, somebody practicing an instrument or singing is actually forming new pathways in their brain over time.
And now we actually have modern methods in science to show that that’s the case. So an updated quote from Michael Thaut, who was the founder of neurologic music therapy, which I like, is “the brain that engages in music has changed by this engagement.” So we could use musical activity to activate the areas of the brain that are either not affected or less effected by neurological disease, like Parkinson’s disease, possibly allowing us to get around the problematic pathways in some of those networks that I already showed you in the prior slide. So what can we do? Let’s cut to the chase. Here’s an example of neurologic music therapy, it’s called Patterned Sensory Enhancement or PSE. It could improve posture by stretching, such as stretching the arms high above the head as we follow a melody. So imagine an exercise where you hear a melody {singing} and then going down, {singing}, so the direction of movement here in this type of music therapy parallels the direction of the musical line. Patients, including those with Parkinson’s disease have reported increased quote, “freedom of movement” with PSE in order to including improved range of motion and ability to exercise longer.
And I hope all of the people listening in today know the importance of aerobic, physical exercise in slowing down the progression of Parkinson’s disease. Now what about actual therapeutic instrumental music performance? This is something that we have really focused on for patients with Parkinson’s disease at our center, through our trials from 2015 onward. The goal is to optimize and improve both fine motor skills in the fingers and gross motor skills in the larger muscles by using this concept of rhythmic entrainment, I’ll go into in a moment. The instrument itself think of a drum or a tambourine can be a target of movement. So you’re reaching to hit a target. And that is part of the therapy. And it’s nice because you get immediate auditory feedback. So if you aim to hit a drum tambourine with your foot or your arm a certain way, and then you missed, or it doesn’t sound the way you like it, you get immediate auditory feedback, including sensory feedback, as I showed you in that slide, the sensory cortex is involved, and you can adjust the way that you’re playing almost in real time.
Now, what about something that anyone, whether we have, whether one is suffering from Parkinson’s disease or not can do right now? Music assisted relaxation. We know that stress can exacerbate symptoms of Parkinson’s disease. And we know that calming music that approximates normal resting heart rate about 50 to 60 beats a minute, that tends to be instrumental. So not involving words because those could produce additional associations in the brain that have lower pitch frequency. So not too shrill, that have little variation in volume pitcher rhythm tend to be calming for most people. This is a generalization, but that generally holds true. And we know that patients and care partners often report decreased stress and symptom improvement during music listening.
And there are multiple studies now across different conditions, neurological, and otherwise that measure cortisol levels, the stress hormone levels, cortisol, for instance, and that clearly shows to be reduced even in the short term, after listening to relaxing music. Now, I promised you action steps. Here’s the first slide. We’re going to repeat this before the end. What can you do today or tomorrow? Well, you can march to music that you enjoy using a playlist from your favorite app like Spotify for example, or Pandora. You can enroll in a dance class. When I first joined the session, I overheard someone mentioned Dance for PD, something we have in Baltimore, Maryland you know, by me and that’s something that we very strongly support and it’s a fantastic international program now. You can consider joining a choir. Nowadays during the pandemic, our choir called ParkinSonics that we spun out of a study, the first study of the Center for Music and Medicine actually meets weekly on Wednesdays, via zoom and people are welcomed. And the fact that it’s via zoom has really expanded access beyond the confines of Baltimore.
And then also last but not least think about seeing a music therapist, look up AMTA American Music Therapy Association and see if there’s a local music therapist who can offer virtual or in-person consultations. This is something that we are starting up at Hopkins, and I’m very happy to say that finally, we’re doing that now. I’m going to really gloss over this slide because I think people on this call are quite familiar with Parkinson’s disease basics. It’s the second most common neurodegenerative disease after Alzheimer’s disease. We know that there are the four Cardinal motor signs, but for many people, the motor issues are really not that high up on the list of problems, but for the motor classic findings is T for tremor, R for rigidity, which is muscle stiffness, A for akynesia, which is really loss of fine motor speed and control and P for postural instability, which is walking, posture, and balance difficulties.
And so that’s the TRAP mnemonic we teach medical students, trapped by Parkinson’s disease. And I emphasize in italics, the postural instability and walking difficulty, because as many of you know, our current interventions for symptom control, whether it’s levodopa, other medications or even deep brain stimulation surgery tend to be less effective or not effective at all for the postural balance issues that can develop in Parkinson’s disease. So how might music and rhythm help people with Parkinson’s disease? I already mentioned therapeutic music performance, and I mentioned rhythmic entrainment. So what is that? We define rhythmic entrainment as the patterning of body processes and movements to the rhythm of music. To put simply, if you’re at a concert and you got to catch a melody and you’ll find yourself clapping along or tapping your foot to the beat, you are rhythmically entraining to the beat. And that is happening in your brain.
A very impressive example that I always use is imagine pre pandemic, or hopefully, you know, soon to come a big concert, a rock concert that you’re attending there are thousands of people in a field and the performers on stage want you to start clapping along. So they start indicating this. And before you know, it, the huge crowd is clapping along in a remarkably coordinated, rhythmic way within seconds, often. That is a wonderful example of rhythmic entrainment. And there is evidence that this is happening in the brain within seconds to minutes of starting to hear a strong beat. So the brain follows along, and brainwaves actually line up, align themselves relative to what the rhythm that you’re hearing is that’s coming through your ears. So again, the idea is to either get around or strengthen the pathways that are affected by Parkinson’s disease.
So here, just to show you a picture again, this was a sagittal slice from one ear to the other, a cutaway of the right hemisphere. Front is here, back is here top and bottom. So the classic pathway for internally generated movement is in yellow. And that’s the pathway that is affected by Parkinson’s disease, the externally cued movement pathway, which kind of goes around the back, if you will, from the cerebellum to the thalamus, to the parietal cortex in the back to the supplementary motor area. And finally the primary motor cortex, which music and rhythm of course effect, as I mentioned in the prior slide, it’s a way to get at the same final area to activate the muscles, to activate and create voluntary movement by getting around the faulty pathway the yellow, in Parkinson’s disease. So that is not proven yet, but that’s a hypothesized way that music and rhythm may be able to help people with Parkinson’s disease.
So what’s been studied the most is rhythmic auditory stimulation or RAS. Typically it’s used for walking and balance, exactly the type of symptom in Parkinson’s disease that is less responsive to known treatments. And we use rhythm as an external timekeeper. So these are auditory sound cues. And you know, traditionally in the seventies, when this started to be used, the metronome was used to keep pace. Nowadays, we use an app or you could walk to recorded or even live music that has a strong march-like 1-2-1-2 beat. And the idea is to entrain your brain as I mentioned, through rhythmic entrainment and anticipate the next step by following the beat, each step is a beat. Sometimes actually verbalizing and counting to yourself. 1, 2, 1, 2, or singing to yourself like row, row, row, your boat, gently down the stream. Believe it or not, those things that I just mentioned, they’ve been studied in Parkinson’s disease, and there’s clear evidence that they may improve multiple aspects of walking and balance.
And so these are things that could potentially help. Now, what about drumming? Well, we know that drumming has long been a part of traditional healing rituals in many cultures across continents. And when I was still in training at the University of Pennsylvania, a group of patients told us that they had a significant improvement in their sense of overall wellbeing after a single 45-minute class led by a west African drum instructor, this was an annual retreat retreat that UPenn puts on for patients with Parkinson’s disease. So when I heard that I was tantalized, and I put together a pilot study that sought to see if drumming can improve wellbeing and movement in Parkinson’s disease. So we designed the drum PD study published in 2015, and we had 10 drummers and 10 folks with Parkinson’s disease who served as controls, pursued their usual treatment, including medications and physical therapy.
And we assessed people at the beginning of the study, six weeks later, in the case of drummers that was after 12 classes twice a week for six weeks of drumming. And then we repeated the assessment at 12 weeks. So six weeks after drumming was over for the drumming group. And what we found was on the PDQ 39 quality of life questionnaire, we saw significant improvements, lower bar in green actually indicates an improvement in those who drummed without significant improvements in those who pursued their usual care. And importantly, after six weeks of not drumming people, weren’t all the way back to baseline but they were close enough to where statistically, there were no changes in quality of life that people reported. So that indicated to us that you’ve got to keep doing it in order to keep experiencing the benefits from drumming. So this is what we concluded.
We also, interestingly, looked at things like timed up and go test to see if there was improvement in speed of walking and some aspects of balance. And there was a trend towards that as well. This was a very small pilot study, but certainly something we’re interested in following up if you can imagine sitting down with a drum and you know, beating a drum, your own drum, but following with an instructor and actually having some gait improvement. That is a trend that we observed. We also saw that there was actually some improvement in mood, but this was not statistically significant in our pilot study for drum PD.
Next, I want to just share with you another example of a study that involved therapeutic, instrumental music performance with guitar, we call the guitar PD, you see a theme. And so we had two groups of patients with Parkinson’s disease who were assigned randomly either to a guitar class first or a guitar class after six weeks. So again, they had twice a week classes for guitar and group 2 received the guitar classes six weeks after group one. And so there was a kind of a crossover design. And so we evaluated everybody at the beginning and then six weeks, 12 weeks, 18 weeks. Across all of the participants, again, the summary index score for Parkinson’s disease quality of life questionnaire improved from baseline to week 12, which is when the drumming cutoff for everybody and remained improved at week 18, but this didn’t reach statistical significance. So trended in the right direction but didn’t quite get there. And then we looked at depression scores with the Beck depression inventory. That’s BDI two, and that also trended toward improvement after six weeks.
And there was improvement in apathy. In other words, increased motivation, also trended toward improvement after 12 weeks. Interestingly, we had significant improvements in the MDSU PDRS, the motor assessment, which is standard for Parkinson’s disease. There was a significant improvement in that at 12 weeks, and that remained improved at 18 weeks. So the motor function did seem to improve in terms of dexterity of playing guitar, but we also looked at an everyday outcome of typing, both accuracy and speed, one hand at a time for 30 seconds that did not statistically improve. Although again, it moved in the direction of improvement. People actually in this study, our participants seem to do pretty well with over 90% accuracy, even at baseline in typing. So we did not see statistically significant improvements there. And what about music therapy for voice? Well, we know that therapeutic singing can be used to help improve breathing, counteract the soft and fading volume and monotone voice that sometimes is a challenge for people with Parkinson’s disease.
The overall goal is to improve understandability. So we did the ParkinSonic study and we recruited 32 participants with PD, randomly assigned them to a weekly choir for about an hour versus a weekly facilitated Parkinson disease support group. And we did this over 12 weeks, included a track diary of home singing exercises. And then those who did the support group after 12 weeks crossed over into singing. And those who did the singing first crossed over into the support group. Again, we looked at some of those same outcomes I mentioned previously and the people assessing those outcomes were blinded as to which group a participant was in at the time. So 26 out of 32, over 80% of patients completed our ParkinSonic study. This was a six-month study, and there were significant improvement from baseline on average loudness on the cookie theft picture, which is basically seeing a picture and for 60 seconds describing what you see and we measured the loudness from a recording, as well as a sound pressure level device.
Also, we had people read a paragraph, a standard paragraph, and there was improved minimal reading volumes at 24 weeks, which is the end of all interventions and 30 weeks, which is six weeks after the end of all interventions in the study. Minimal loudness and the rainbow passage reading was improved as well as on the description of the cookie theft picture. And interestingly, we saw some movement improvements between baseline and 24 weeks and 30 weeks, regardless of the order in which people got singing. So what we cannot conclude with a hundred percent certainty from this study because of the design is to what extent it was only the singing that could be blamed for these improvements versus actually being engaged in a support group, because that probably helped as well. But clearly there were improvements in the overall group that are encouraging. So we concluded that weekly group singing is a feasible intervention that can improve some aspects of voice volume in Parkinson’s disease and some improvements were actually seen at least six weeks after the intervention is completed.
And so weekly group singing seems to be feasible. And we went on to create a ParkinSonics program that continues weekly. It was in the same church in Baltimore city where we did the study, but now it’s via zoom and it’s open to patients with all Parkinsonian disorders and even care partners. So this is funded through our movement sort of center and the center for music and medicine and going forward in the future we plan additional assessments of voice, motor function and quality of life. So now as I head towards the end of my talk, I want to just give you a couple of highlights for our center for music and medicine. So we are about to submit a paper on the short-term effects during clinic assessment of rhythmic auditory cuing and atypical Parkinsonian disorders. So those are the evil cousins of Parkinson’s disease that don’t have really effect of treatments. Levodopa doesn’t work well, DBS can’t work and they progress more quickly so I focus a lot of my research on that.
We are in the midst of a pilot home trial of MedRhythms. It’s a device delivering rhythmic queuing through music, through a playlist. And the playlist on the phone is linked to sensors on each foot. The sensors via Bluetooth send updates on participants, walking and balance metrics and the song speed as well as the rhythm is adjusted every 20 seconds on the basis of each individual’s walking pattern. So we’re doing that. We have started zooming drumming classes for people with Parkinson’s disease, and that’s going strong since February and then our partners at the Peabody School of Music through Hopkins are offering subsidized group guitar lessons for individuals with Parkinson’s disease. That unfortunately has been on hold until recently but should be starting up during the fall semester.
Also, I’m proud to tell you, on the hospital side, I am a consultant on the music for pain project, through the school of nursing, where we are going into specific units and offering Spotify playlists to improve pain control, hopefully medication use for pain and reduce anxiety in patients, not only in neurology and psychiatry, but other units as well. We have submitted a paper and personally selected music for men undergoing radical prostatectomy, which is something that we found encouraging results for, again, reducing pain and anxiety. And I’m proud to say that we have created together with several partners across Hopkins, the Baltimore racial justice concert series, where we have three concerts planned per year with local Baltimore performers and each concert is effectively a fundraiser for a Baltimore base racial and social justice organizations.
I’m proud to tell you that there’s an NIH Kennedy center partnership that was formed back in 2017. And there are research opportunities through the NIH to use music for healing. This is something that I’ve been privileged to review grants for. Renee Fleming, by the way, I’d be remiss not to mention has a wonderful webcast series you could look up called music and mind through this NIH Kennedy center partnership. And there is a broader movement afoot, particularly starting in the UK, which we hope to really spread around the US as well, the British health secretary at the time, Matt Hancock, who has since resigned in 2018 proposed to enable the doctors in the UK to prescribe therapeutic art or hobby based treatments for ailments, including dementia. So this concept is called social prescribing. So when you come to see me, in addition to prescribing medications, I could give you a script to join ParkinSonics, or a drumming group, or a community orchestra, or start taking music lessons or go to an art gallery or museum for therapeutic purposes. The evidence is growing that this could prolong life, not just improve quality of life. And there are provinces in Canada who have been starting this as well. And shortly before the pandemic, Massachusetts launched the pilot social prescribing program as well.
So now let me reiterate some of those action steps you saw before. What can you do to help yourself? March to music you enjoy through a playlist, enroll in a dance class, think of dance for PD, join a local choir virtual or otherwise, pick up a musical instrument, whether you’ve played one in your youth, pick it up again, or challenge yourself with a new instrument or start voice lessons. Consider seeing a music therapist. At this point, I will stop. Thank you so much for your attention. And I have a few minutes for questions.
Polly Dawkins:
Thank you so much. If you’ll stop sharing your screen, I can ask the questions here. They’re starting to come in. The first question that I neglected to ask you that I asked the other presenters as they started is tell us, how did you get into the field? How, what drew you to this work and how have you specialized in this?
Alexander Pantelyat:
Well, I’m going to try to be very brief to allow for other questions. I have been playing violin since I was seven, and it’s a very big part of my life. That’s what I would be doing professionally if I weren’t in medicine. As I like to say now to my patients, I hope for your sake, I’m a much better physician than I am a musician, but nevertheless music remains very near and dear to me, and is a big part of what I do and I’m very fortunate to be able to combine my two passions from a professional standpoint, at the center for music and medicine. In terms of what drew me to this kind of work. My mother, who’s a neurologist as well, told me a story early on of grand rounds at her medical school, where a patient with down syndrome, who was in his forties patients with down syndrome, unfortunately are at a very high risk of developing Alzheimer’s disease very early on. And he developed Alzheimer’s disease to the point of having very limited speech, and he essentially lost his ability to speak, but had a lovely voice. And earlier in his life had taken voice lessons and learned several Italian opera Arias by heart, foreign language for him.
So he lost the ability to speak his native language, but retained even in the throes of advanced dementia, the ability to perfectly sing with excellent diction Arias in Italian. That was truly an inspiring example for me that I heard from my mom. And then there were inspiring examples during my career as a resident at Penn. Two patients came in, believe it or not, one night apart, one of whom was a professional singer. The other had no music exposure, both had severe strokes affecting the speech center in the left frontal lobe. And they were mute. They were unable to speak, but right away the attending started he was a bit off key, but nevertheless, he’s saying happy birthday to you. And they were able to sing it right away, even, you know, in the subacute phase, after a stroke, not able to speak at all, they were able to recruit the music processing and music making areas of the brain to actually reproduce meaningful sounds in speech. So those are just a couple of things that really motivated me and inspired me over the years.
Polly Dawkins:
That’s great. So you mentioned he, wasn’t a very good singer of happy birthday. What’s the, you know, people say, oh, I’m no good at music. I can’t sing. So probably music or music therapy, wouldn’t be beneficial for me. How would you answer that?
Alexander Pantelyat:
I’m so glad that you’re asking this question. Probably the most important question to ask. This is what people in our studies, particularly the ParkinSonic singing study were coming up to us during screening and during the study itself and saying, I was discouraged from a young age by my parents, by teachers, by others saying, you know what? You have no talent. You have no place singing or playing a musical instrument that cannnot be farther from the truth. There is, I hope I’ve helped convince you after my brief talk today, something to be gained for everyone, regardless of musical ability when it comes to music and rhythm exposure. So yes, it’s true that from a genetic standpoint, from an exposure standpoint, everybody’s starting at a different point in terms of where you are, but there’s no question. And this has been clearly shown that music and rhythm-based interventions can help people across the full range of musical ability. When it comes to true tone deafness, it’s called a musia. Actually, it’s actually very, very rare, less than 1% of the population. So we’re talking about 99 plus percent of us who are able to process melody to at least some extent and can glean things. And even for those with amusia, they could still process rhythm. So something like dance for PD or beating to a drum can still be therapeutic for those folks. So please do not be discouraged. And what I’m saying is it’s never too late, regardless of age, to start activating parts of the brain that have been dormant and start leading to neuroplasticity and hopefully creating new pathways to get around pathways that have been damaged, that are in the process of being damaged by aging Parkinson’s disease or other diseases
Polly Dawkins:
You mentioned music therapy. Can you describe briefly what does a music therapy session look like?
Alexander Pantelyat:
Yes, highly individualized and something that I didn’t realize myself until I worked, started working closely some years ago with some talented music therapists. So training is still a bit variable depending on where it’s done, the big differences between north America and Europe, for example. But certainly if you think of a psychotherapist, a talk therapist, let’s say who uses cognitive behavioral therapy techniques probably familiar to most listening, that is an aspect of what a music therapist can do. And that’s very important for so many people, isn’t it? However they incorporate it and use it through music, whether it’s therapeutic instrumental music performance, pattered sensory enhancement, rhythmic auditory stimulation, music assisted relaxation, and many, many other examples of music therapy that a music therapist could show you. These are all things that could be incorporated and are highly adaptable and individualized to a particular patient. So this is what I’ve seen in my experience, referring to a music therapy. And by the way, I want to add that during the pandemic of course, there’s so many other things, music therapy has shifted largely to virtual interventions, and we are very interested in doing studies of this. And I think it has there’s a lot of potential of using music therapy virtually, which is why we have these virtual classes.
Polly Dawkins:
Yeah. And is music therapy covered by insurance?
Alexander Pantelyat:
Well now we’re asking you about a question that really gets into social prescribing. You need to look state by state. In May of this year, I’m happy to say that Maryland became the 11th state to approve a licensing board structure for music therapy. That is a crucial step on the pathway towards unique code creation for Medicare and other health insurances, to be able to bill. As of now, what music therapists in most states do typically working in a hospital setting is an occupational or physical therapist does an initial evaluation. There’s a determination that a music therapist can help. And they piggyback on the same codes that occupational physical therapists use for follow-up visits, which is obviously inefficient and doesn’t always get covered. So the answer is it’s very different state by state. And you know, certainly you might guess, east coast, New York, Massachusetts, other new England states are the ones that have led the way here.
But my goal in my lifetime is to hopefully have all 50 states get the licensing and that this is national and that there’s a universal reimbursement for it because frankly, to something that has arguably little if any side effects and has a lot of upside, including not only quality of life, but actually changing rate of disease for certain diseases. I think there’s a lot of upside from a health economics standpoint and in the US we need to make the health economics argument to get the bean counters to get this covered. And that’s, that’s what we’re working on in the coming decades.
Polly Dawkins:
Yeah. Does music help with apathy or depression? That was a topic we just talked about before you came on with was depression.
Alexander Pantelyat:
Wonderful segue. So if I’m going by the studies, a couple of which I summarized for you today, it seems like mood is what improves across the board and quality of life is what seems to improve across the board. Apathy specifically, it’s interesting. So we know that music activates those areas of the brain that are affected in diseases like Parkinson’s disease, which leads to apathy. So you definitely are getting that activation from repeated music exposure, paying attention, and then assuming it’s enjoyable music, again, that’s the caveat. You gotta find what you enjoy through a playlist for example, then you’re going to be motivated. Chances are you’re going to be motivated to come back to it and exercise to music or play an instrument, do things time and time again, that’s the motivational aspect. And in fact, I think that’s a key part of the value that music-based interventions add on top of something like a standard LSVT big therapy or loud therapy, which can be very effective, but people lose motivation to do over time.
Polly Dawkins:
Yeah. Are there many physicians like you who understand the benefit of music, or are you unusual in your understanding of those two fields?
Alexander Pantelyat :
That’s a little bit difficult for me to answer, certainly in terms of throwing statistics out, I could say that our center, I think is unique in the United States for its breadth, arguably USC and UCSP, San Francisco have you know centers of similar scope. But certainly things, let me put it through this way. Things have moved in a good direction. So the fact that I just gave the example of a licensing board approved for music therapy in the state of Maryland, just in May of this year during a pandemic, I think speaks a lot to the fact that people are generally paying more attention to the potential benefits of music. The other really encouraging thing, which drives things is the fact that the NIH is putting real money behind this kind of research. $20 million in 2019. And we still have to get the final budget, but hopefully at least another 20 million for projects that will move music and health research forward in this fiscal year. So these are key things that indicate there’s forward movement in recognition of importance of what music and rhythm can do for health.
Polly Dawkins:
That’s really exciting. A couple of more questions. If you have a few more minutes, do you have advice for people here who are listening as to how to find Parkinson’s choir or singing group, or does it have to be Parkinson’s specific? How, how do you encourage people to get involved in their community singing?
Alexander Pantelyat :
Fantastic practical question. So I think the first thing as always to pretty much any question as Google. Beyond that if you have, it depends on disease stage, this is kind of like rock steady boxing classes with different, with different degrees of difficulty. If you’re early on in the disease course, you’re not a couch potato, and you’ve been an avid exerciser your whole life, especially if you’ve had prior boxing exposure, then I wouldn’t recommend a class for PD. I would recommend the regular class so that you really push yourself to keep up with those without Parkinson’s disease. And yes, I have patients just like that with PD who are keeping up. Now, same thing can be said for joining a serious or rather a choir of people without PD. Other than that in the Dallas area, for example, there’s an amazing choir.
It’s called the Parkinson’s Voice Project. I don’t have it on the slide, but the Parkinson’s Voice Project, they have a lot of funding at this point. They couple their singing with LSVT, which is just fantastic. And they’ve been spreading Iowa, in rural Iowa, I believe in Iowa State University. There’s a growing number of choirs that the Elizabeth Steggemoller, who is a a great partner of mine and a colleague who has been moving forward, obviously the Baltimore choirs and Philadelphia, there’s a choir that I started before leaving to Baltimore, still going strong. So you want to Google, look around carefully and seek and you shall find.
Polly Dawkins:
One of the singing groups we know of here in our local community is called Tremble Clefs. And I’ve heard, I’ve seen those in different communities as well. So that may be something people could, could Google as well, Tremble Clef.
Alexander Pantelyat :
Yeah, by the way, as a side, the ParkinSonics was a name voted on by these study participants. We thought that was very important to use the democratic process because often a lot of discussion goes around you know, you don’t want to have any stigma attached to the name of the choir. So ParkinSonics is people really agreed upon.
Polly Dawkins:
It’s a great name. Thank you. One last question that I’m going to close with a couple of comments we’ve heard to your session, actually, two questions. Is there a difference between listening to ambient music or using earbuds or headphones? Any, any difference in efficacy?
Alexander Pantelyat:
Fantastic question. The short answer right now is no, in terms of what’s used in studies, typically it’s through headphones because if there’s other ambient noise, that’s superimposed on top of what you’re listening, if you don’t have headphones, then you know, it’s being mixed up. So it’s hard to tell the effects of intervention, whether it’s music or something else. So we use headphones typically, or ear buds, but certainly for just the, you know, do it yourself at home. If you prefer to not have something in and around your ears, there’s nothing wrong with that at all.
Polly Dawkins:
Oh, great. And what is your advice about a drumming class similar to the singing, like to find one Google it?
Alexander Pantelyat :
Yeah. Well, I have to be honest. That’s going to be a little tougher, but look, I mean, for people who are interested because our drumming classes via zoom, I think we have a few more spots at this point for our wonderful talented drumming instructor. So I’m happy to have interested that people email me and I will pass that along to Jason Armstrong Baker who leads it.
Polly Dawkins:
Super. And one of our ambassadors up in Massachusetts does a drumming class as well. So when we follow up this recording today, we’ll follow up with links and we’ll get that link for you, for people to contact the drumming class.
Alexander Pantelyat:
They would very much love to see that series of links because we can incorporate it, share it on our social media. That’s okay. And just get the word out better.
Polly Dawkins:
Absolutely. Absolutely. Somebody asks do I have to give up guitar? I have trouble keeping rhythm at this point.
Alexander Pantelyat:
Wow. So this is very tricky. And in my experience, this is where prior level of expertise plays into it a lot, because there’s a lot of frustration that goes into somebody who was professional or a serious musical performer on an instrument, and then losing that ability is very stressful and frustrating. So at that point, I would say, let it go. For everybody else who doesn’t have that level of you know, hours of practice, 10,000 hours for expertise, commitment. I would encourage you as much as possible to never let it go, keep plugging at it. I just showed you results from our guitar PD study. Obviously, they’re not a slam dunk and more studies need to be done, but that’s true for most things, but for behavioral interventions, certainly. But clearly, we have directional results, even for things like typing, there was some accuracy improvements. So it seems like there may be some carry over effects, certainly mood and anxiety are likely to improve if you are doing this on a regular basis, at least twice a week. So I would urge you not to give it up
Polly Dawkins:
Many of our community don’t really understand how to develop a set list and what that looks like, a playlist, is that people can just put on an old record or a cassette tape or, and listen to music. Right?
Alexander Pantelyat:
Well, certainly, yes, it’s all about what’s personally preferred and selected. I was giving examples from applications that happen to be free. You know, Spotify, there are paid versions too, but you could build a Spotify playlist very easily. You could build a Pandora playlist. I use this with my kids all the time, and they’re just crazy about these things that run on repeat.
Polly Dawkins:
So ask your kids to help build you a playlist if you don’t know how to do it.
Alexander Pantelyat :
What a wonderful way to pick up on what I was implying. Yes.
Polly Dawkins:
Exactly. All right. Now, a personal question for you. What’s your favorite music?
Alexander Pantelyat :
Me? So I was, you know, I’m biased. I have to profess my bias to classical music because that’s what I was trained in. Since then, I’ve really branched out. I play some bluegrass, some jazz, some blues. So I love all of those different kinds of music, but I don’t want to pretend to say that those types of music I just named are going to be best for everyone. That’s just not true.
Polly Dawkins:
Yeah, that was just a personal get to know you question, all right, the world opens back up. You have the opportunity to go to one concert. What will it be?
Alexander Pantelyat:
Me? Oh my God. Well, I think it’s pretty easy. Cause we were just thinking about this it’s to see its Hak Perlman performing with the Baltimore symphony. So that’s, that would be my short answer. He’s an idol of mine.
Polly Dawkins:
Awesome. Awesome. Well, we really appreciate you being here today and sharing this. I want to give a closing comment from one of our our audience today who said, “This is so exciting to hear. I have early onset Parkinson’s and will be retiring soon to explore what I love, music and art, movement and design. I thought it would help. And now I’m sure it will. Thank you.”
Alexander Pantelyat:
Thank you for the beautiful comment. I couldn’t agree more that this will be very helpful going forward. I hope to many, many people listening today.
To download presentation slides, click here.
Additional Resources For “Music and Rhythm For Parkinson’s”:
- Johns Hopkins Center for Music and Medicine
- Dance for PD
- The American Music Therapy Association
- Voces Unidas
- The Parkinson’s Voice Project
- Tremble Clefs (located virtually and throughout the country)
- ParkinSINGS
Boxing Movement Break
more about our speakers
BRIAN LUKE SEAWARD, PHD
Brian Luke Seaward is recognized nationally and internationally as one of the foremost experts in the field of resiliency, stress management, and corporate health promotion and is an esteemed and often-quoted inspirational speaker and TEDx speaker. He has authored more than 18 books, including the popular best sellers Stand Like Mountain, Flow Like Water; The Art of Calm; and Stressed Is Desserts Spelled Backward and the award–winning college textbook Managing Stress (10E). His corporate clients include Hewlett Packard, Royal Caribbean, Wells Fargo, TransAmerica, Procter & Gamble, Conoco-Phillips, Motorola, Quaker Oats, John Deere, BP-Amoco, Blue Cross/Blue Shield, Maxtor-Seagate, Organic Valley Dairy, The US Army, and the Air Force. For 25 years he served on the faculty of the University of Colorado Consortium for Public Health. Currently, Dr. Seaward is the Executive Director of the Paramount Wellness Institute in Boulder, CO, and serves on the faculty of The Graduate Institute (Bethan, Connecticut).
GREGORY PONTONE, MD, MHS
Gregory Pontone is an Associate Professor in the Departments of Psychiatry and Neurology at Johns Hopkins University School of Medicine in Baltimore, Maryland. He is an Attending Psychiatrist in the Geriatric and Neuropsychiatry division where he treats patients with neurodegenerative disorders (including Parkinson’s and related disorders, Alzheimer’s dementia), and behavioral disturbances resulting from these diseases. Dr. Pontone is the director of the Johns Hopkins Parkinson’s disease Neuropsychiatry Clinic, which focuses on diagnosing and treating the neuropsychiatric aspects of Parkinson’s and related disorders. His research focuses on the interaction between neuropsychiatric symptoms such as cognitive impairment, anxiety and depression, and motor impairment in Parkinson’s.
ALEXander PANTELYAT, MD
Alexander Pantelyat is an Assistant Professor of Neurology at the Johns Hopkins University School of Medicine. He is the director of the Johns Hopkins Atypical Parkinsonism Center, the co-director of the Johns Hopkins Movement Disorders Fellowship Program, and the co-founder and director of the Johns Hopkins Center for Music and Medicine. His research is focused on the diagnosis and treatment of atypical parkinsonian disorders, such as dementia with Lewy bodies, progressive supranuclear palsy, corticobasal syndrome/degeneration and multiple system atrophy; cognitive aspects of movement disorders; and music-based rehabilitation of neurodegenerative diseases. Dr. Pantelyat earned his medical degree from Temple University School of Medicine in Philadelphia, completed his residency training in Neurology at the University of Pennsylvania in Philadelphia, and completed a fellowship in movement disorders at the University of Pennsylvania/Philadelphia VA Medical Center. He is a 2013 American Academy of Neurology Palatucci Advocacy Leader and grant recipient, a 2014-15 American Academy of Neurology Emerging Leader, and a 2014 Johns Hopkins University School of Medicine Osler Attending Program inductee.
MELISSA TAFOYA
Melissa Tafoya is an activist and advocate for people with Parkinson’s to provide hope and improve quality of life. She is a pint-sized powerhouse with a mountain of creativity, experience, and purpose and has been training and coaching special populations for nearly a decade. Growing up she felt different; she was incredibly shy and terrified of the world. In elementary school, she found her voice on the playground and became known as the Mini Mike Tyson of tetherball. Melissa grew to be a voice for others who were too shy or misunderstood. Little did she know it would define her destiny to start Rock Steady Boxing Sacramento, while allowed her to put her love of hitting things and defending others together. This worldwide affiliate program is evidenced-based, non-contact boxing designed to improve quality of life for people with Parkinson’s. She recently founded her very own center of hope, Hope In Your Corner, a safe space designed specifically for her fight family and private clients to thrive as well as for support groups to meet. In addition, she currently serves on the Latino outreach committee through Parkinson’s Association of Northern California (PANC).
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THE VICTORY SUMMIT® VIRTUAL EVENT SERIES
Our final event in the 2021 The Victory Summit® Virtual Event series will be held Saturday, November 13, and shines a spotlight on the Parkinson’s care partner experience. Learn from and interact with Parkinson’s care partner experts, Parkinson’s care partners, and mental wellness professionals who will help you become the care partner your person with Parkinson’s needs without burning out, losing yourself, and losing the joy of life. By the end of the event, you will have a whole new community of support at your fingertips and a toolbox of practices that will help you thrive as a Parkinson’s care partner. Learn more and register for the event here.