The Victory Summit® Virtual Event

Sleep and Parkinson’s

Friday, September 9, 2022

Sleep And Parkinson’s

9:00 am MDT (8 am PDT, 10 am CDT, 11 am EDT)

Thank you for attending the Victory Summit® Event: Sleep and Parkinson’s! 

Below you can find the recordings of the event, transcripts, all mentioned resources and additional educational materials.

For many years, the benefits and causes of sleep remained a mystery. However, in the past few years, sleep science has grown significantly. As a result, we now have a deep understanding of the importance of sleep, why it is so essential to sleep consistently and properly, the effects of sleep medicine, and how people with Parkinson’s are specifically affected.  

Parkinson’s can impact sleep in various ways, ranging from trouble falling or staying asleep at night to excessive sleepiness during the day. A night of good sleep boosts everything from mood to the ability to think and process physical movement. Therefore, understanding the intersection of sleep and Parkinson’s can significantly impact quality of life.   

During The Victory Summit Event: Sleep and Parkinson’s, we will explore neurodegeneration, light therapy, different types of sleep-related issues, cognition, mood, exercise, and how they all impact a person living with Parkinson’s. These sessions will not only be informative, but they will also inspire you to take action to improve your quality of life and manage this complicated symptom of Parkinson’s.

Recordings & Resources

sleep and living well with parkinson’s

You can read the transcript below or you can download the transcript here. 

Polly Dawkins (MBA Executive Director, Davis Phinney Foundation):

Hi, Davis.

Davis Phinney (Founder, Davis Phinney Foundation):

Hello, Polly.

Polly Dawkins:

Welcome to the virtual stage.

Davis Phinney:

Thank you.

Polly Dawkins:

So, our organization started not quite 20 years ago, and we’ve all learned so much in that time, you with your lived experience and that’s alongside you and alongside our community, learning and researching and understanding what it takes to live well with Parkinson’s, and sleep is such an important part of that.

Davis Phinney:

Yes. Sleep is one of the absolute keys to every living moment with Parkinson’s

Polly Dawkins:

Yeah. So, Davis, how did you sleep last night?

Davis Phinney:

I mean, I slept okay. Not great. I don’t know if I was worried about speaking this morning or I’ll just, you know, some of my bad sleep behaviors cropping up. Like yesterday, I took a nap, which is typical for me, but I took a too long nap, I would say. And then last night I had an extra glass of wine, which is never really conducive to good sleep.

Polly Dawkins:

Right.

Davis Phinney:

But I still try to follow my main pre-bedtime ritual, which is to get in bed fairly early, say nine or nine-thirty, because my wife likes to go to bed early and she gets up early, earlier than me in general. But also, one thing I did last night, which would, was not as helpful with, was that I didn’t construct, constrain my fluid intake. So, I had to get up to pee three or four times, which is one of my banes of good sleep.

Polly Dawkins:

Yeah. You know, I wonder, Davis, at a previous event like this, at a Victory Summit, we learned about red light. So, when you get up, not to turn on the lights and wake your body back up, but to have a red light that might be less disruptive. Is that something you’ve done at home?

Davis Phinney:

Yeah. We have a little bathroom light that actually goes green or blue, and that, so that I have a point of reference which is how I get to my bathroom, not waking up, stumbling around in my closet, which is pretty fun. That’s there.

Polly Dawkins:

Yeah. Yeah. You know, I few years ago my mom gave me a light that you could put inside your toilet, and it illuminates the toilet so that you don’t, which I have not used yet, but I wonder if that would be a good thing to do to, so you know where you’re going, where you’re aiming.

Davis Phinney:

Yeah. Possibly. I mean, ours is right next to our toilet, so it works well.

Polly Dawkins:

Yeah.

Davis Phinney:

But one of the things that’ve I done to improve sleep time, like getting bed. There’s been a big one because I was having some REM sleep disorder, bad behavior things where I was punching my wife and whatnot when we were sharing a bed and all of those have pretty much gone away with the separation of bed. And so-

Polly Dawkins:

That’s a good idea. So, you mentioned REM sleep behavior disorder. We have some good resources written about that for folks who are tuning in and don’t know what that is. I’m sure one of my colleagues will drop that in the chat. So, you mentioned that having separate beds has helped you.

Davis Phinney:

Yeah. And then reading a book on Kindle, which allows me to stay up later because the light doesn’t bother my wife. And so that’s a good ritual. And then the bad aspect for me is that I’ll frequently check my phone for an Instagram post for my kids, which I follow religiously. And that then sucks me down the whole Instagram rabbit hole. Oh. You know, end up with way too much screen time on like my phone, which is just not, not very conducive to good behaviors.

Polly Dawkins:

Yeah. So, limiting screen time before bed or in bed is a good practice.

Davis Phinney:

Oh, right. Yeah. And the kinds of screens, too, but it doesn’t have the effect as like your laptop or your phone. Yeah. It’s not so bright. Yeah. And that’s much better for healthy. Some of the other things that I do are that I always need to, to manage the temperature of our and keep my legs cool. Because if my legs get hot, then I’ll having restless and that’s a good sleep. Sleep is rest of leg syndrome.

Polly Dawkins:

Yeah.

Davis Phinney:

And that’s another reason that having separate beds works well for us, because my wife will sleep with two down comforters on, so I’ll sleep with the sheet. We

Polly Dawkins:

Be hanging out-

Davis Phinney:

Yeah. With my feet hanging out. Exactly.

Polly Dawkins:

Another thing that I know you’ve talked about, and one of our speakers at another event used to sing a song to this concept, which is to stop watching the news before bed.

Davis Phinney:

Yeah. Stop watching the news-

Polly Dawkins:

Exactly. It’s making you sad.

Davis Phinney:

Yeah. No, that’s true. And that’s one thing that I constantly don’t do is follow too many news threads or if I’m on my phone or I’ll, or else we just, as the couple don’t watch the news after 6:00 PM. Yeah.

Polly Dawkins:

Yeah. Because it just sort of gets you worked up and-

Davis Phinney:

Yeah.

Polly Dawkins:

Yeah. Anxiety around what’s going on in the world.

Davis Phinney:

Yeah, that’s right.

Polly Dawkins:

Yeah.

Davis Phinney:

That’s right.

Polly Dawkins:

So, Davis, you’ve mentioned so many different strategies that you use. You’ve mentioned reducing your intake of fluids before, before you go to sleep, reducing your alcohol, bringing screen time down, not watching the news before bed temperature control in your bedroom, separate beds. You’ve also mentioned before about that all of the things you do in the day are sort of interconnected

Davis Phinney:

Yeah.

Polly Dawkins:

To how you sleep and how you sleep. Really. Tell us a little bit about that.

Davis Phinney:

And I think that that starts in the morning when you wake up is whether you’ve had a good sleep or a bad sleep, you’ve got give yourself the intention that it’s going to be a good day. And so that’s very important just to start with an intention that today is going to kick. And even if you don’t feel it’s important to say it and then get up and if you can get outside even better and just, you know, arms up baby. Yeah. Because that’s the, the key to starting your day out. Right. And then if you can exercise by all means, exercise is very important to, to your overall body health and your, and your sleep eventually as well. Yeah. As well.

Polly Dawkins:

You’ve also talked about sort of quieting your mind down.

Davis Phinney:

Yeah. Well, and that’s part of my own sort of advice to people about meditation is that that I’ll meditate in a less formal way that many people do, but I’ll still have a procedure for when I wake up or when I’m try trying to go to sleep, which is to just lay on my back and quietly, listen to my breathing and count your breaths up to 10 repeatedly. And that, because I’ve done that for a few years now, that’s proven a good method for calming my voices in my head that would otherwise be telling me to get up. You got to worry about this. You got to worry about that. You know? And so, I’ll just lay back and,

Polly Dawkins:

And that helps.

Davis Phinney:

Yeah. Because it’s like a signal to my brain to shut down. And so that that’s very good for me. But as you said, Polly, I think the key to sleep is there, the reason that we need sleep is because it’s so good for our whole body. And if our whole body is getting rest and recovered and having its neurological responses fulfill in that way, then we’re going be healthier and better in the long run. Yeah. Then, but I should add one more thing about sleep, which is that the timing of your me meds are so important. And so, for me, I’ll take a long-lasting love for, from retiring right before bed. And even if I’m waking up or early in feeling sort of agitated, I’ll take that same pill in the middle of the night just to hack my system and support it so that I can sleep into the morning a little bit more.

Polly Dawkins:

Yeah. That’s such a critical piece of, and there’s so many pieces to this puzzle.

Davis Phinney:

Yeah. And it

Polly Dawkins:

It’s probably changed over the years for you. And it’s probably different from when you before you had deep brain stimulation to after.

Davis Phinney:

Oh yeah. I mean, deep brain stimulation has culled my tremor now for nearly 15 years. Yeah. And that’s been the biggest sleep enhancement that I could have ever imagined because pre-DBS, I was sleeping maybe max 15 or 20 minutes at a time. And that just crush time.

Polly Dawkins:

Yeah. I mean, that’s how wolves sleep, but our humans aren’t meant to sleep that way.

Davis Phinney:

No. Well, and then when you wake up and you’re immediately tremor in your hands doing this, and so you’re paining your arm now trying to go to sleep while activating actively depressing, your tr that’s not helpful or good,

Polly Dawkins:

Not at all.

Davis Phinney:

And so not having to deal with the tremor aspect has been so such a godsend for sure.

Polly Dawkins:

David, you, and I could talk about sleep for a long time, because it’s certainly not one of my superpowers either. But we’ve got some great experts who are going to come on and you and I can come back at the end and catch up and send people off onto their days. If that works for you,

Davis Phinney:

That works for me. Let’s get to it!

Polly Dawkins:

Let’s get to it. Super. Well, thanks everybody for logging in, telling us who you are. Thank you, Davis, for sharing your own personal sleep and Parkinson’s journey. And we’ll call you back on the stage in a bit.

Davis Phinney:

All right. Thank you. Thank you, Polly.

Download the audio here.

sleep, light, and neurodegeneration

You can read the transcript below or download the transcript here.

Melani Dizon (Director of Education, Davis Phinney Foundation):

Okay. So, I’m really excited to welcome you here today. We’re going to talk about sleep and light and neurodegeneration, and just that conversation, I feel like just that conversation that Polly had with Davis is going to give us 10 hours of content. There’s just so much to talk about or related to sleep. But as we said, you know, everybody’s bio is in the program book and Sam posted the link a little bit earlier. So, I don’t want to read your bio word for word, but I would love to hear from you about what you’re doing and how you got interested in sleep and movement disorders, and where you’re sort of research and experience has brought you

Aleksandar Videnovic, MD (Associate Professor of Neurology at Harvard Medical School, Director of the Division of Sleep Medicine at MGH, and Director of the MGH Program on Sleep, Circadian Biology, and Neurodegeneration):

Good morning, everyone. It is really my great pleasure to be with you all today. And this is the first program that I’m doing with the Phinney Foundation. I’m very excited about that and would like to applaud to all of your efforts and for bringing such a great PD community together. These are such a worthwhile and much-needed effort. And it is wonderful that I have this opportunity to be part of this today.

Melani Dizon:

Yes. And I will say, I have to tell you this because when I was putting this together and I was talking to our friends about sleep, you were at the top of every person’s list. So, I was like, well, how have we not had him on this to this day? So, I’m really thrilled to finally have you on with us.

Aleksandar Videnovic:

Oh, this is very kind, there are many colleagues who do this line of work. And but this is, this is very kind. Your comments are very kind just to briefly introduce myself. I’m a neurologist, I’m a movement disorder specialist. And also, I specialize in sleep medicine. I work at Massachusetts general hospital in Boston. Prior to my work at my general hospital, I was in Chicago at Rush University Medical Center and subsequently at Northwestern. And how did I develop interests both clinical and research interest in sleep? Well actually that dates back when I was a fellow in movement disorders from two, and at that time, really a lot of my patients would come to see me, and they would complain about excessive daytime sleepiness. It was a time and dopamine agonists, which many of patients who join us today, I’m sure are still using are in the focus of medical and scientific PD community because of those associated issues of sleep attacks and sleepiness.

And this was really very debilitating to my patients at that time. I developed interest in that area, how, what can we do to help them? And everything else is in the past. I remain in that field of work with some additional aspects as well. But I really dedicated a lot of my both clinical and research work to the intersection of sleep and Parkinson’s disease. And I’m sure we will have an opportunity to talk about this today during this interactive session.

Melani Dizon:

Yeah, absolutely. Well, thank you so much. One of the things that I know that I want to give to our audience today is this ability to kind of be a fly on the wall in a conversation with a doctor, they very rarely probably will never get 60 minutes with their doctor to talk about sleep. The one topic that can really impact absolutely every single area of their life. So, I want to give them that today. So, we’ll get started on that. One of the things I want to start with though is just to, for some people that are, you know, maybe recently diagnosed with Parkinson’s and they’re hearing a lot of different things about, you know, some people never sleep, some people sleep too much, you know, some people have terrible dreams, some people don’t love to just kind of start out with a level set and say, what is happening in the brain of somebody with Parkinson’s that is impacting sleep. Why is this such a problem? And we know that it’s a big sort of prodromal symptom, right? Why is that?

Aleksandar Videnovic:

Well, the process that leads to eventual development of Parkinson’s disease starts decades before the onset of a tremor or balance problem, or one arm doesn’t moving much as we walk, right? So, this is the process that starts 20, 30, 40 years before these symptoms emerge. And those changes in the brain are occurring very, very gradually. And these areas that are affected by these changes that are causative of Parkinson’s disease, do not necessarily start in the areas that are important for movement, right? Parkinson’s disease is a movement disorders. Simply those areas can start in brain regions that are very relevant for the regulation of alertness and regulation of sleep. And as this pathology progresses it’ll affect different regions of the brain in different patients. So, therefore, the onset of sleep problems and the type of sleep problems that patients may develop throughout their journey with Parkinson’s disease will be very different. And one aspect that we always share with our patients that there are no two Parkinson’s patients that are fully alike and similar and similarly sleep problems are, we know very ubiquitous in patients with Parkinson’s disease, but may affect very differently our patients with Parkinson’s disease. So, changes in sleep are simply occurring, in Parkinson’s disease because they affect the areas of the brain that are relevant for the regulation of sleep and alertness.

Melani Dizon:

Great. So, let’s I think it would be great. There are a lot of topics that everybody wants to talk about, and I want to make sure that we get to them, but let’s start with one of the most common questions we get, which is what is the difference between sleepiness and fatigue?

Aleksandar Videnovic:

Yeah, that’s a very good question. And the way I try to explain it is fatigue is really a lack of energy, right? You just really feel very fatigue. You feel like you want to lay on the couch all day long. You’re really exhausted if you try to get up and do some things, fix the lunch, go throw the garbage out, et cetera, or do any activities, you just feel exhausted, right? You just have a lack of energy. Being sleepy is a little bit of a different phenomenon. And you just really have this urge to really fall asleep. You just need to close your eyes, and you’re just going to easy breath to sleep, even eating lunch or breakfast, or so one can just nod and often fall asleep with fatigue. However, one of the pointers that I like to tell my patients if you are fatigued, and if you lay on the couch, you will not necessarily fall asleep.

You can feel exhausted, but even if you try to sleep, you may not be able to fall asleep, sleepy person. They don’t even need to lay down. They can fall asleep, even sitting in a, in a, in a chair or at breakfast table. So, I think this is how we can differentiate between these two phenomena, which can overlap, right? So, both of these can coexist at the same time, but the same time they are different. They are really different aspect on a symptom spectrum, right? We are talking about very different symptoms. And in my experience, fatigue is much more challenging to address. Sleepiness can be a very problematic as well, but there are things that we can think about what can be really the because of that sleepiness and how we can intervene with fatigue, which affects majority of our patients. At least almost all of them. If you look at the entire lifelong journey with Parkinson’s disease frequently, it’s a large unmet need frequently. We can’t do much to pinpoint the because of it. And therefore, we are not great as with treating it

Melani Dizon:

Right. And so sometimes when you are, well, we’re going to talk about different ways to treat sleepiness and different sleep issues. But sometimes if you’re you might very well figure out a way to get this person to sleep. And so, they don’t have the sleepiness, but they might still struggle with that fatigue during the day. And that’s going to be a sort of different mechanism that you have to treat. Okay. So, I know one of the fields that you’re really very interested in and is circadian biology. Can you talk to us, what is circadian biology, and you know, why do people with Parkinson’s need to know about it?

Aleksandar Videnovic:

Yeah. Yes, Mel, this is an area of that we have really worked a lot on. And well, circadian biology is the area of biology that is interested in the study of our internal timing of what we call circadian system or circadian rhythms deep in our brain. We have about 20,000 nerve cells that function like that function as our internal clock, our internal timer, all of us have it, right? And that internal timer that is located in the brain is the conductor for all other clocks that are distributed all over our body, all of our organs, our heart and kidneys and liver and stomach, they all have their own clocks. And this mechanism gives our organism the sense of time. And this central clock that is located in the brain, coordinates the function of all of these other clocks across our body.

And why do we need to have this timing system this internal time? Right. Well, we live in the earth and the earth rotate around the sun. And as a result of that, we are exposed to dark and light cycles and these dark and light cycles control our lives, right? They influence the social function and any other function for humanity. It is really that internal clock that signals our body and our organs and tells us, wow, the Dawn is just approaching, and let’s synchronize our body so that we can get up, that we can have energy moving, and that the flow of food is appropriate, and the blood pressure goes up. And all of those things that are really very important for us to live on this 24-hour scale and to function as a human during the daytime and during night.

And the circadian system has been present and is present in all organisms on the planet. So, it’s evolutionary very important biological phenomena, right? When we talk about sleep, the rhythm and the circadian pacemaker is very important because it really helps times our, our behavior it signals when we should go to bed, it helps us stay awake during the daytime. And it helps us stay asleep at night where we shouldn’t be asleep. The significance in Parkinson’s disease is such that we and others have demonstrated that that clock is not ticking correctly in patients with Parkinson’s disease the strength of that clock and oscillations of that time, timekeeping signal seems to be dampen in patients with Parkinson’s disease. And that can have a negative downstream effect on all of the other organ systems, which are really necessary for the appropriate functioning of us, of humans.

Right? And the last piece that is important to understand one can ask, well, this clock is deep in our brain, right? How does that clock know when it’s going to be the dawn and when the light is going to come out and when the night, when the dusk is coming, right? Well, the clock receives the signals from the outside world. And the most important signal is light, is sunlight. So that’s the most important synchronizing agent because that light from the environment and from the sun hits our eyes and then special cells at the back of our eyes directly transmit that light. It’s like a highway that goes from our retina, from our eye directly to our circadian pacemaker. So light is very important, and we can talk more about that. How do we implement that in the daily lives of patients with Parkinson’s disease, but even other activities that are non-photic stimuli, not related to light stimulation can help synchronize that internal clock with the outside world.

For example, physical activity can be great for telling us for keeping our internal time or strong and on time, even timing of meals throughout the daytime can serve as a good signal to our internal timing system to keep it, to keep it function properly and work properly. So, I hope that I brought this concept a little bit closer to the audience. I think this is a relatively novel research direction. And I would leave it at this, and we’ll see if we’ll have more questions as the conversation evolves.

Melani Dizon:

Yeah, absolutely. I know we’ll come back to it, but just so that I understand, is it because of your meal timing and your exercise timing, how are those impacting your circadian clock? Is it because you if you are getting it on a routine, you’re teaching your clock basically like you’re teaching your internal clock, and is it, well, if you exercise at the same time every day, or you have your meals at the same time every day, that’s, what’s going to do it. But if you’re all over the map, you’re still going to, your kind of going to mess your clock up a little bit.

Aleksandar Videnovic:

Exactly. That is just right. Just think about traveling to the different time zone when we go from, when we go from east coast, let’s say we travel to India, it’s going to be a huge shift. When we arrive to India, we’re going to be reversing our biological daytime for the nighttime. And it’s going to take a long time for the, for the clock who is not used to this cue from the environment. And it’s not used to be awake at that time when it’s supposed to be the nighttime in, in Boston, for example, it takes long time, right? So, think about those aspects, like a jet lag problem or issues with seasonal depression that can occur. Why does that happen? Because the lighting cycle from outside world is changed and in the winter, the days are shorter. And that light that now does not get to stimulate that internal timing is reduced, and that can affect, for example, mood in this case. And we know that patients with Parkinson’s disease frequently suffer from a mood problem. So, I think they have a really great opportunity to better understand the importance of that timing system for, for general health. This is relevant to all disciplines of human health, not only Parkinson’s patients, but it’s really important for our community of Parkinson’s disease. First of all, because this is very dear to us, and there are potential interventions that we can employ to improve our function really through using very easy non-pharmacological intervention without a lot of side effects.

Melani Dizon:

Yeah. I think the interesting thing about this topic, that’s getting a lot more sort of prime-time news these days. I think the interesting thing is probably for most of our lives, we’ve just thought, oh, well, that’s just, it’s just what it is. There’s the clock is the clock and it’s light and it’s dark. And there’s nothing that we can really do. That’s like a that’s bigger than we are able to do anything with, but what you’re saying is no, that’s not true. And we have, we have control. We have a lot of things that we action that we can take and hopefully will get into some of those specifically as we talk about treatments. So, another question that we get a lot is what can you say about the difference between sleep-related issues that are Parkinson’s or age-related? Like, do they look different? And, you know, a lot of people are said, I don’t know if it’s just because I’m getting old or because I have Parkinson’s.

Aleksandar Videnovic:

That is a great question. And I would just say that there is a great overlap between Parkinson’s disease and is disease of aging. And all of us is the age will experience some issues with our sleep cycle. Our sleep is going to become a little bit more fragmented. Our deep sleep, which enhances memory formation is going to be reduced as we age, but generally aging population should still be able to achieve good sleep. Other things that are happening with aging and sleep is that comorbid sleep disorder starts to occur, increase. And then if you have an aging as we all hope to do, if everything goes well, if your aging gets complicated with Parkinson’s disease, you have a double hit when it comes to your alertness during the daytime and nighttime sleep. And I would just look at Parkinson’s issues as it being much broader than normal aging, but super imposed on what normal aging does to sleep and sleep in us during the daytime.

Melani Dizon:

Okay. a lot of times we’ll hear, you know teenagers, they should be getting 10 hours of sleep and but that, you know, as you get older, you need less and less sleep. And we think old people don’t really sleep that much like, or is there, is, is that true also for, for people with Parkinson’s or is that absolutely not true? Like everyone should be getting a certain amount whether you have Parkinson’s or whether you’re 18 years old,

Aleksandar Videnovic:

Well, we all need to get sleep, right?   if we just don’t get sleep right, we simply would die, right. If somebody restrict your sleep, we will not survive. So, sleep is really essential function for, for, for survival. Many studies have done to investigate how much sleep is needed and how, how much is enough. And we like to say that anywhere between six to eight hours of sleep in general for the general population should be enough. Some studies have demonstrated that having less than six hours and more than nine hours may have some negative consequences for, for help for Parkinson’s patients for decades, we have appreciated this phenomenon, which is known as sleep benefit effort. We hear over and over from our patients that their Parkinson’s disease is not as problematic the day after goodnight of sleep. And we hear that even responsiveness to some PD medications may be enhanced after goodnight of sleep.

And I believe there is a biological explanation for that because dopamine metabolism, dopamine being one of the major brain chemicals involved in Parkinson’s disease through being deficient in this disease state metabolism of that dopamine may be dependent on how well our sleep is consolidated. So, if we have a good physiological state of five, six hours of sleep, the majority of this is really uninterrupted, uninterrupted, and good of a good quality. It may be that the dopamine availability may be enhanced and therefore the following day, it can be a good day for us. So, this is a phenomenon that is known and for, for decades and something that many of our patients report, that’s why we try to emphasize good night of sleep, especially in the Parkinson’s disease population.

Melani Dizon:

Great. Okay. So, let’s talk about different types of sleep disorders. And so daytime sleepiness, I just want to go through a little bit of, like, what does it look like? How does it show up for people? If they could say, oh, you know, it’s real sleepiness or drowsiness, sleep attacks, Reem sleep, behavior disorder, restless legs, insomnia, and then any, anything else you think we should talk about? So, let’s, let’s start in with the daytime sleepiness and drowsiness. What, what are people what’s happening to them, and what

Aleksandar Videnovic:

Sure. The patients really it’s simple, right? The patients will just doze off and will have to take many naps. And they are feeling very spaced out and go for a social event because they just feel that they cannot maintain fully their alertness. Frequently though patients will not be aware of it. So, this is important to point. And if I have a caregiver or a spouse next to the patients, as I ask is how is your daytime? And they would say, great. And I see the caregiver nodding the head in a different direction, and patients are frequently not aware of them nodding off as they eat food at mealtimes or how much they spend dosing off in a so far watching while watching TV or reading sleep attacks are a little bit more dramatic sleep attack.

Are these episodes where one transition from full wakefulness to sleep very quickly, and that can happen even within 30 seconds? Sometimes patients do not even have warning signs of transitioning from full wakefulness to full sleep. And these are obviously very dangerous because there are situations where safety of the patient their loved ones or others on the road, if they’re driving, maybe, maybe in jeopardy. And this became very heated topic in the field in early nineties, when the initial description of sleep attacks was reported in individuals who were taking and started to be treated with dopamine agonists like Texel and or epi, and these agents have up to 30% chance of causing excessive sleepiness and somewhat smaller percent of provoking sleep attacks. So that’s why we cancel our patients when we start these drugs and monitor them on a regular basis after they have been treated with these medications, which are important medications to have in, in our doctor bag, but they can come with this potentially very troublesome side effect. So, this is really what excessive sleepiness is, and the causes are really very numerous of the successive sleepiness. And we can dive into those as well if you want, but in terms of the definitions of these two entities, this is what I would, what, what I would say about how, how we define sleepiness and sleep attacks.

Melani Dizon:

Great. Yeah. So that note to care partners or friends or family members of people who are starting those drugs definitely keeping an eye on that super important. Is there in your research, have you found, is there if somebody is it because people are not getting the sleep or can they actually have a, a good night’s sleep and then they’re still facing this

Aleksandar Videnovic:

That’s excellent question. And it’s this latter scenario. One would think, oh, this must be because I have a terrible sleep. And that can be through, in some cases, patients may have undiagnosed sleep apnea, waking up all night, not realizing that. And of course, they’re going to be sleepy the following day. That’s one of the Cardinal symptoms of obstructive sleep apnea, but also patients may have a very good night of sleep and have a lot of challenges with staying awake during the daytime. That can be a result of certain brain areas that are important for controlling alertness when we are awake that are being affected by the disease, but also maybe a result of maybe underlying depression and anxiety that are not being treated or medications that are maybe causing drowsiness during the daytime. There are many possible explanations. So, one home take message that I would have for, for everyone who is on this call today is we all should including email and myself, and we all should pause and ask ourselves, how is my sleep?

How often do we think about that? Right? How is my sleep being my alertness during the time? Good. Can I try to improve that? I bet you that a lot of us, if not the majority of us really doesn’t or hasn’t asked this question recently, and this is really very, very critical. It’s a similar question that we should ask for. How are my meals? How is my nutrition being my physical activity? Good? Do I keep connections with my friends and with my family? What is my social network? Because I heard someone said something recently, which really strike me. He says, we want to go travel to the moon, and we don’t know how to eat properly. And we don’t know how to sleep well on the planet third. And we want to go to the moon. It’s just really some, we have not capitalized on these important pillars of health and only we are in control on these major pillars of health.

And yet we have put too much effort on the chemistry and all of these pills expecting that this chemistry that we put in our body needs to fix this. And sometimes we need pills. Don’t hear me wrong, but we’ll be able to do so much better if you pay attention to these other aspects that are solely in our control. Right? And so, I went off charging of target a little of tangent a little bit, you know, I’m on tangent here, but, but this is a really important message, right? This is maybe the most important message that I would have to relate to anyone who is on this call, including myself. I am terrible for some of those aspects that I just mentioned. So, I should, I should take notes from what I’m saying today for my own purpose.

Melani Dizon:

Right. okay. So, let’s, let’s talk about RBD, REM sleep behavior disorder. What is it, what does it look like? How does it show up for people?

Aleksandar Videnovic:

This? Well, we shouldn’t supposed to have our favorite disorders, right? That’s wrong.

Melani Dizon:

Right. That seems wrong, right?

Aleksandar Videnovic:

This is so important. This disorder is so critical. And let me explain why it is critical. And so many levels. When we go to sleep, we oscillate through stages of sleep. And two major stages are REM sleep and non-REM sleep, right?

And this disorder is called REM sleep behavior disorder. So, this tells you that it’s going to happen as we sleep. As we enter into that REM sleep. Something is not right in this disorder, right? Well, what is not right is the fact that when we entered REM sleep, and if we have REM sleep behavior disorder, we do, we are not paralyzed during that tram sleep. What I’m trying to say, normally, as we sleep and as we enter REM sleep, during that period of sleep, we cannot move. Our muscles are paralyzed. Only breathing muscles are working. And in this condition re behavior disorder, our muscles can move, right. Well, why would they move right? If we are asleep, doesn’t make sense. Why is that important if our muscles can move if we sleep? Well, it’s important because there is a second part. Second, second side of the coin of that disorder.

And that is that in REM sleep, we usually dream dreams are associated with REM sleep. And in this disorder for an unknown reason, there are action-packed, very aggressive, frightening dreams that are occurring, going to attack us, or we just really want to escape the fire or not even aggressive dreams. We just want to jump into the pool. We are sitting standing at the edge of the swimming pool, and now you can act out your dreams because remember you are not paralyzed as you move to this sleep-in, in this disorder. And as a result of that, if you are dreaming that you are ready to jump in a swimming pool, you will jump out of a bed on a hardwood floor of your bedroom. Or if you try to defend yourself, you’re going to punch your bed partner, or you’re going to choke your pet that sleeps next to you.

So, the disease is very important because it can because substantial injuries and sleep interruption, both to the patient and to the pet partner. And it is also important because we know that individuals who only have that sleep disorder are at increasing risk of developing Parkinson’s disease or other Parkinson’s related conditions down the road. So, it’s important to improve and treat this disease so we can minimize the impact on sleep and safety of our patients. But the disease has become so important that these individuals who only have these sleep disorders will now become ideal target population to study interventions, aim, to slow the progression of Parkinson’s disease, because it may take decades between the onset of these weird dreams and behaviors and night until the signs of Parkinson’s disease show up. So, we have an unprecedented opportunity as disease as these new disease-modifying therapies become available to intervene earlier, have a chance at an earlier stage of neurodegeneration to be more successful in, in arresting that process. So, this is what RBD is.

Melani Dizon:

Right? So, when you let’s say you actually get somebody, a patient who has RBD or comes to you and says, I’m having these issues with sleeping and I’m acting things out, there’s no other Parkinson’s related anything. They haven’t been given a Parkinson’s diagnosis, but you see them having REM sleep behavior disorder. Is there anything that you can do now? Like, what is it, are you doing anything that is not you know, exert like anything that’s pharmacological that you can actually do for those people now? Because I, once I once heard a doctor tell me it was a hundred percent that the people who have RBD actually is how far off is that seems I’ve never heard a hundred percent before with anything.

Aleksandar Videnovic:

Yeah. Well, you should have not heard a hundred percent because it’s not hundred percent and the numbers are, are very variable.

Melani Dizon:

That’s excellent.

Aleksandar Videnovic:

The treatment question first, we need to treat the symptoms to minimize the chance for injury in terms of preventing the risk of developing neurodegeneration. We have increasing number of longitudinal research projects and consortium, including RBD consortium, where we can enroll patients and do a yearly detailed assessments so that we can track eventual progression of their disease and get them ready for this disease-modifying trials. And one intervention that we will that we build a proposed to these patients who have even only RBD is a vigorous exercise regimen.  I know that you have here later on from my dear colleague and expert in the field, Dr. Amara about importance of exercise when it comes to sleep and other aspects of Parkinson’s disease. But we know that the exercise from many studies may be enhancing health of these nerve cells that are producing dopamine. And while we can’t tell them, this is for sure going to be helping, we can say that there is excellent rationale for you to engage in a vigorous exercise program in order to reduce the chance of developing one of these disorders down the road. We hope to have a inter interventions that are going to be soon launched that are going to be focused on prevention of development of these or progression of these neurodegenerative diseases in the RBD population, per se.

Melani Dizon:

Okay, great. Well, so we talked about acting them out as sleep talking. Somebody asked to sleep talking related to this, is it part of,

Aleksandar Videnovic:

Yeah, not necessarily. So important message here at this point is to say that not everything that looks and sounds like RBD is RBD, right? Because we can’t alarm the public because everybody is going to once or twice a life as something maybe similar to this, what I just described, for example, sleepwalking or isolated sleep talking are completely different phenomena from brain behavior disorder. Patients with RBD usually do not leave bed. They do not walk around the house. There may be overlap with sleepwalking and REM sleep behavior disorder. So that’s why it’s important that if one has any suspicion or concern that this may be re behavior disorder, that you reach out to your provider, you find the sleep specialist knowledgeable in this area. And so that you can settle this issue because really important message is not everything that sounds that looks like RBD is RBD.

Melani Dizon:

Okay. Is sleepwalking and sleep talking a thing that people Parkinson’s experience more than the general population, or is that not tend to be?

Aleksandar Videnovic:

We do not encounter that frequently.

Melani Dizon:

Okay.

Aleksandar Videnovic:

Sleep talking maybe, but sleep, sleepwalking is mainly disease of our children and early and adolescent adolescence. To certain extent, we try to overgrow this problem is the age.

Melani Dizon:

Okay. Okay. Can we talk a little bit about restless leg syndrome?

Aleksandar Videnovic:

Another sleep disorder? And this disorder is classified as a movement disorder of sleep, and that is a condition usually which starts to creep up in the evening hours, as one is relaxed and sitting on a couch watching TV or reading. And then there is this irresistible urge in legs. Usually sometimes arms as well, that that urges us to move, right? We, there is this unpleasant sensation, you know, maybe like water running down the down, our, our caps, or maybe some bugs crawling, and we just need to move. And then we get up, we move around. That goes away. We come back, we sit down, it comes back in few minutes again. So, this is a prototypical description of restless leg syndrome. Now interface of RLS in Parkinson’s disease is very similar. And I would argue that we don’t even know the prevalence of how common restless leg in par or restless flags in Parkinson’s patients is because it is really hard sometimes to distinguish what are symptoms of Parkinson’s disease.

And that can really be our RLS mimics. There are many mimics of RLS and therefore a lot of patients will say, I have RLS. And at the end of the day, it’s not going to be this. It’s going to be maybe rigidity that gives patients that uncomfortable sensation. That is, that is relieved as they get up and walk. It can be nocturnal like cramps. Some patients will have peripheral neuropathy. So, it’s really important to think carefully, is this restless legs, is this something else? And the good news for patients who have both is that we treat, we use the same medications that we would use in the treatment of Parkinson’s disease to manage restless leg syndrome. So, there is a silver lining there, but, but this is, I’ll leave it here so that we have more time maybe for some other questions and answers. I leave it here when it comes to restless legs.

Melani Dizon:

Okay. Okay, great. Yes. I know people are going to have questions are already asking them and then insomnia.

Aleksandar Videnovic:

Insomnia, inability to fall asleep to stay asleep or to sleep enough early morning awakening, right. Or combination of any of these three symptoms, very common problem in Parkinson’s patients, the most common, I would say, and specifically, what is common it’s fragmented sleep. I think if we are if we are to address the largest unmet need among patients with Parkinson’s disease when it comes to sleep, I think it is really fragmented sleep. Patients will easy fall asleep in majority of cases, but then an hour after hour or after three hours, they will, they will wake up and this is going to, they’re going to fall back to sleep. And this is going to continue throughout the night. And I would say that a lot of our work has really targeted that sleep fragmentation. What can we do to try to consolidate the sleep of our patients being that being the largest problem in my opinion?

Melani Dizon:

Okay, great. Well, we’ll definitely get into that. One of the questions we do get is, you know, people will write to us, talk to us about their sleep issues and they want to know when does a, you know, just sort of general sleepiness, fatigue, insomnia, when does that rise to the level of a sleep disorder and that they should, you know, raise their hand and say, I need some real specific help here.

Aleksandar Videnovic:

Well, I would suggest that the patients talk to their loved ones, their caregivers, their, their spouses, their children they may learn very valuable information, how their sleep is. They also may have a lot of insight, to begin with. And if the quality of life is really impaired and affected by their inability to sleep or inability to stay alert after you ask your, that yourself, that question, it’s important to start with a self-assessment, I think it’s time to approach a physician or a light field professional and talk about these issues.

Melani Dizon:

Yeah. And it could be great to the minute you start thinking about it, start tracking it and have your, if you live with somebody, sleep with somebody, have them start tracking it with you so that you can go with a lot more data. Okay. So, I would love now to take each one that we talked about and then talk about the different treatments pharmacological non-pharmacological that are working. And certainly, I’m sure light therapy will fall, fall into that. So, let’s talk about daytime sleepiness and sleep attacks. What, what is typically,

Aleksandar Videnovic:

So, I probably, Mel, what I would say first, it is really important first to get a good, better, good understanding before we jump onto treatment, right? Because obviously, it is important to diagnose appropriately primary sleep disorders, right? It is important to find out if somebody has sleep apnea or if somebody has restless leg syndrome, or if somebody has RBD, right? Because these are categories of sleep disorders, which are very clearly defined, and we can diagnose them. If you take a look at sleepiness, for example, or sleep fragmentation, you really don’t know what’s causing those because apnea, restless legs, and RBD, they can all be causing this sleepiness and nighttime sleep fragmentation, right? So, it’s really important to take an opportunity and not miss the primary sleep disorder that may be main driver of these issues with sleep and an alertness.

It’s also very important to pay attention about. And this is uniform across all of these, all of these sleep problems. That’s why I’m mentioning this. Now. It is important to understand whether one is depressed or not because that has a huge impact on alertness and an ability to sleep at night and an antidepressant or behavioral therapy to improve mood can be really very helpful in these cases. Similarly, review of medications, it’s also very, very critical because if someone is taking a lot of sedating medication during the daytime, or if they take medicine that have alerting properties close to their routine bedtime, that’s going to make them unable to be awake during the daytime or fall asleep at night respectively. Right? So, these are some basic grounding principles that one can, that one can try to employ.

Melani Dizon:

So let me speak to that a second. So, if you had somebody come to you and they’re kind of talking about all these different sleep issues that they’re having, might you say, Hey, let’s get you assessed by a, you know, a neuropsychic psychologist or psychiatrist or something like that first to see if there’s depression, or is this something that you’re going to do an assessment there and then be like, oh, okay.

Aleksandar Videnovic:

Yeah, I may do assessment. If I feel that there is untreated depression, I may treat depression. If I feel that they may need a sleep study to see whether they have sleep apnea, we’re going to run that test. You’re going to get that answer quickly. I may adjust some of their medications and tell them, please do not take amantadine too late in the evening. Or you are taking too much of clonazepam during the daytime for the management of anxiety. Can we manage your anxiety in some different way? And if they have sleep attacks, I need to do something with dopamine agonist and tell them, we’re just going to need to reduce this drug and see how we’re going to manage your symptoms of Parkinson’s through some other mechanism. It’s a really complex conversation that we need to have with our patients. And as you mentioned in a 30-minute visit, follow-up visit with the provider, there is so much that needs to be discussed and sleep frequently gets neglected and pushed to decide. And so that’s why I’m advocating that our, our participants today dissect this and think a little bit more carefully about how they approach it,

Melani Dizon:

Right? When you mentioned sleep apnea for a sleep study where, what is the value? What are, what can a sleep study tell somebody, what is it not good for? What is it good for?

Aleksandar Videnovic:

Yeah. Well, the sleep study can tell us what the sleep continuity is, sleep fragmented. It can tell us what’s the oxygen supply during the nighttime, whether, whether what’s the breathing pattern do we stop breathing every 30 to 60 seconds, which we sometimes see, and that causes a small arousal that we are not even registering. And one can have hundreds of these throughout the night, not realizing they’re happening. We can also take at the leg movements and see, are there are a lot of leg movements we can even detect tremors at night as individuals are sleeping. So, sleep study is a very useful tool in assessing sleep and picking up on this diagnosis that we have a specific treatment, like putting a C P a P mask for individuals who have obstructive sleep apnea, which can improve their cognitive functioning during the following day, which can have a positive effects and alertness overall quality of life, be a good for heart health in addition for to brain health. So, we can do a lot in, in the sleep arena to improve not only PD-related symptoms, but also to maximize the potential for other problems that can come down the road.

Melani Dizon:

Okay, great. Alright. So, the marching orders, or for everybody to pay attention to their sleep, their patterns what they’re doing have a friend, a care partner, somebody who lives with you, somebody who spends a lot of time with you to share what they notice, what they see and then, and talk to their doctor and let’s say, okay, I’ve gone to my doctor. We’ve been able to parse out what is, what let’s talk a little bit about some of the strategies that somebody can employ. And then some of the, maybe some of the drugs that are being, being used, and I’d love to talk about melatonin and light therapy, because these are, these are common, common questions, and people have many questions about what they can do with those.

Aleksandar Videnovic:

Sure. So just for the sake of time, if you had the chance to hear Mr. Phinney talk about his approach to sleep, I almost felt, what am I going to talk about that? Because after his feedback that he has provided to all of us today, so all of these are great ideas, and I would like to endorse all of them. I am going to touch upon on light therapy on melatonin. We used to call it sleep hormone, right? It is it is available for purchase over the counter. It is relatively benign substance medication; however, you want to call it and what it does, it can help with the sleep consolidation. It has a Subic property, and I think it’s a good, relatively benign medication to try if someone has a problems with maintaining sleep, assuming that other primary sleep disorders and other causes that can be addressed have already been addressed.

Right. I think melatonin is a great choice. Melatonin is also a great choice for the management of sleep behavior disorder because it comes out those dreams and this dream enactment. And it’s my treatment of choice when I initiate therapy for patients with REM Sleep behavior disorder, whether they only have RBD or they have Parkinson’s disease. And RBD together, we have done a lot of work with light therapy and are currently actually completing a nationwide clinical trial on light therapy and its effect for its effect on sleep fatigue and some other manifestations of Parkinson’s disease. And if you, if you heard me speak about the circadian system, I told you that the light is really that connection between our body and our brain and outside world, right? And it is really important that we expose ourselves to enough amount of bright light during the daytime.

Why is this important in patients with Parkinson’s disease? Well, it is important that Parkinson’s patients are prone to not getting enough light during the daytime. And why is that? A lot of Parkinson’s patients do not get enough outdoor exposure. There are mobility limitations. There are mood issues. I feel anxious. I don’t care. There is apathy. I don’t want to go out. You name it. He also said that Parkinson’s is a disease of aging. Our eyes are changing as we age our lenses that are part of our eyes are becoming yellow. We are developing cataracts. All these are barriers to light getting into our brain. And finally, our retina, which is a part of our eye on the back of our eye. It’s important for our vision has a lot of dopamine normally, but that dopamine gets lost in retina. Similarly, like it gets lost from the brain and it is that dopamine that is critical for our eyes, ability to process that light from outside world.

Therefore, you are hit on so many levels. Why our brain, if we have Parkinson’s patients is not getting enough, enough light? And therefore, we have with other groups worldwide have started to do systematic study of a phototherapy of a light therapy in which we provide the supplemental light exposure to our brain, trying to strengthen the function of that clock that is deep in our head. And that I said is really directing functions of our body so that we can maximize our health and optimize our behaviors. Right. And light therapy is really, it’s really like a drug. If you think about it, right, you need to know when to do the light therapy, how long to expose yourself to the lights. Do you need to do it once a day or twice a day? And also, there are all kinds of light, especially in the modern society, which light is right for me.

Right? And so, it is really not straight. Unfortunately, it is not straightforward either. I can’t tell you what is going to work for everyone, but I can give you some tips, do not do bright light very, very early in the morning, or for sure, very late at night, because then you’re going to shift your normal natural times when your body wants to wake up. And when it wants to go to sleep, sometimes it’s a very useful, so someone who on the other hand sometimes do so we need to time it right, for a person who cannot stay awake past 7:00 PM and would like to go to bed with spouse at 10:00 PM. It can make more sense that they do that just before that 7:00 PM mark to push their bed cycle later on. But if someone really normally goes to bed at 10 and starts doing their light at nine 30 or 10, they may not be able to fall asleep until midnight.

So, we need to be very, very careful. That’s why I say, and I like to say, if you expose yourself in the mid-morning about an hour, two hours before you wake up, and if you don’t expose to yourself to light for about two to three hours before bedtime, I think you are in a safe zone, right? You want to maximize the bright sun that is out there because that strength of that light is going to be as good, even maybe better than what you can do from the light boxes. And frequently, I get a question. How long is enough? If I have a light box, I will say, if you do it 30 to 40 minutes a day, I think it’s a good start. And don’t get too with colors. Everybody says, oh, I’m going to have this green blue spectrum, et cetera, just get a good, bright, light, white, bright light, and start with that and see what that can do for you.

So, I’m going to pause here. So, I gave you a lot of tips. I gave your ideas, why light is important, gave your idea why you likely are not getting enough light. And I gave your idea how to use light and will soon report on this clinical trial and hope to do many more trials based on what we find from this study. And hopefully, the light therapy is going to be beneficial. Not only for, for sleep. It can improve mood; anxiety we’ll see what effects it may have on a cognitive function. Think about it. It’s an easy intervention it’s widely available. It doesn’t have side effects for most of the time, as long as you get too used to it and use it properly again, you may use like inappropriately. So, I just don’t want you to start going and buying and ordering on Amazon light boxes today. Just take a, take the time to educate yourself a little bit about it. And maybe we can have a session about, about light in the future through this, through this type of programming as

Melani Dizon:

Well. Oh, I hope so. I am already, I have a million more questions and I just saw the time. So, I would love to yes. Invite you back so we can have a lot more Q and an around this sleep-in light therapy. I do want to ask one quick question though, because I know this is something that people often ask when it cut. Like, so the light therapy, the timing is important. What about melatonin? Somebody said, do I take it right when I want to go to bed? What, how is it going to help me with my clock? What, what is the best time to take that

Aleksandar Videnovic:

Great question. I usually advise patients to take it 30 to 40 minutes before intended bedtime. There are some other applications of giving melatonin, try to help patients who are owls or larks to become a little bit more to the norm, but that’s too complicated for Parkinson’s patients who want to take it for poor sleep or to treat RBD. Just take it 30 minutes before bedtime start with a three milligrams. If you cannot, five, three-milligram tablets, you can go to five milligrams, see what that dose does for you, and then discuss it with your, with your physician, what the next step should be.

Melani Dizon:

Okay. Well, thank you very much. Yes, you have an open invitation to come back whenever I appreciate everybody’s questions. I hope we got to a lot of them. I know we missed some, but we do actually have a lot of information. We have some information on light therapy. We have lots of information on RBD so we will be sure to share those with you in the recordings and in all of the emails that we send later. So that you can catch up on that. Thank you again so much for being with us. And I hope that we get to talk to you again soon.

Download the audio here.

movement break from lsvt® global

You can read the transcript below or you can download the transcript here.

Cynthia Fox, PhD, CCC-SLP (Co-Founder and Vice President of Operations of LSVT Global, Inc:

Hello everyone. I’m Cynthia Fox and I’ll be joined in this movement break with my colleague, Angela helper, as we know, nearly 90% of people with Parkinson’s disease have changes in their voice and speech that can make communication more difficult and challenging. But what can be frustrating is the person with Parkinson’s disease doesn’t feel like their voice has changed, but yet those around them often say, what did you say? I can’t hear you. What we’re going to do today is just a sample of the L S B T loud exercises to get you revved up and make that voice come alive. The first exercise that we will do are the long AHS. These really help improve your breath and voice support together and establish a good quality loudness that we then train into speech. So, Angela is going to lead you through this exercise.

Angela Halpern, MS, CCC-SLP (Chief Clinical Officer LSVT LOUD):

Hi, my name is Angela, and I’m going to take you through some of these exercises. Let’s get ready to practice. The first exercise we’re going to do are the long OS. I’m going to be counting it down for 15 seconds, but I only want you to hold it as long as you can with loudness and quality. So if you have to stop and take a little breath, that’s totally fine. All right, here we go. Let’s get ready to practice. I’m going to have you do what I do. Ah, now you’re going to do that and hold it out. Here we go. 1, 2, 3, ah

Keep it going. Keep it going. Keep it loud. You can do it almost there and stop. Awesome. So you should feel that effort as you do that. A, here we go. Number 2, 1, 2, 3.

Keep going. Feel the effort, keep it loud. Keep it loud. Keep it loud. You’re almost there. All fantastic. Okay. You should be feeling revved up as you do this next. A, I want you to think about the effort. That’s the effort you want to use all the time. When you talk, here we go for number 3, 1, 2, 3. Ah, good loudness. Keep it going. Keep it there. Good loudness. Feel the effort almost there and stop. Awesome. Okay. Let’s stop and get a little sip of water so that you’re keeping good hydration. Okay, here we go. For the next 1, 1, 2, 3, Ah,

Keep it loud. Good, loudness. Keep going. Come on. You can do it. Dig deep, dig deep, almost there, and, stop. Fantastic. Okay. This last one. Really be feeling that effort. That’s the effort we want you to use all the time. When you talk, here we go. You got it with Gusto. 1, 2, 3.

Keep going, keep it there almost there. Good loudness. Feel the effort and stop. Woo. Good work.

Cynthia Fox:

The next exercise that we will do are the high Os and the low Os, these work to help improve your intonation by taking that good awe voice. You just practiced and going up high and pitch and low in pitch. So once again, Angela will take you through this exercise.

Angela Halpern:

I’ll do one first, so you can see what we’re going to do. It’s going to sound like this. Ah, I’m only going to have you hold these for about five seconds. All right, here we go. 1, 2, 3, ah. So you should have felt just as loud here as you did when you start. If you didn’t, let’s bump up that loudness. Here we go. 1, 2, 3. Good. If this is a little too high, you can try this next one. Do what I do. Here we go. 1, 2, 3.

So do what works for you to get that good stretch. Maybe you can go even higher on this one. Let’s try. Here we go. 1, 2, 3. Great. Now that you’ve done those high OS, we’re going to go low. What goes up? Must come down. So, we’re going to start with that same good. A voice and go low. Start loud to be loud. I’ll do one first for you. It’s going to sound like this. Ah. So, you’re going to use that same. Good. A voice, stretch as low as you can. Keeping it loud. Here we go. 1, 2, 3, Ah. Here we go for the next one.

Ah.  Keep going, keep it loud. Keep it loud. You got it. Fantastic. All right, here we go. For the next one. Start loud to be loud. 1, 2, 3. Keep it there. You got it. I want to hear that loudness. Fantastic. All right. We have a couple more. You’re doing great. You should feel like your voice is really warmed up. 1, 2, 3. Keep it there. Keep it loud. That’s it great on this last one, feel that effort you’re using. That’s the effort and loudness you want to use when you talk. Here we go. 1, 2, 3.

Keep it there. Yep. That’s it. Nice and loud. You got it. Fantastic.

Cynthia Fox:

The third exercise that we’ll do are the functional phrases. If you were in treatment, your therapist would have you come up with phrases that are very specific and individual to you. But for this exercise, we’ll provide some phrases to you. So I’ll turn it back over to Angela again.

Angela Halpern:

Now you’re going to take that wonderful awe voice. You just practiced and we’re going to put it into speech. So feel that same effort and loudness. You will see some phrases appear on the screen as each phrase appears. I want you to read it with that same effort and loudness. This is the voice that will help you to be heard and understood. So it’s going to sound like this. Good morning. How are you? Here we go. If you haven’t had L S V T loud before we would encourage you to seek out a therapist and get treatment, you have important things to say, you need to be heard and understood.

Cynthia Fox:

We hope you’ve enjoyed this movement break and your voice feels warmed up and alive. We encourage you to greet someone today, either in person or perhaps on the phone and say hello with this good loudness and see how they respond. Even if it feels just a little too loud to you. If you’d like to learn more about speech, voice changes with Parkinson’s more about LSVT lab treatment, or to find an LSVT lab certified clinician near you, please feel free to visit our website. Thank you and enjoy rest of the victory summit.

Download the audio here.

the effect of exercise on sleep in parkinson’s

You can read the transcript below or you can download the transcript here.

Melani Dizon (Director of Education, Davis Phinney Foundation):

I am excited now to welcome Dr. Amy Amara. Hello.

Amy Amara MD, PhD (Associate Professor of Neurology, University of Alabama at Birmingham):

Hi there.

Melani Dizon:

How are you?

Amy Amara:

Doing great, thanks.

Melani Dizon:

Good. Thank you so much for being here today. We’re really excited to talk to you.

Amy Amara:

Thank you.

Melani Dizon:

Where are you? What is behind you?

Amy Amara:

This is University of Alabama at Birmingham.

Melani Dizon:

Excellent.

Amy Amara:

But I’m actually moving soon, closer to you guys, to University of Colorado.

Melani Dizon:

You are?

Amy Amara:

I am.

Melani Dizon:

Oh, my goodness. This is the best news. I cannot believe that! That is exciting. We’re so excited. Okay, great. Okay, so let’s get going. Like I said, Dr. Amara’s bio can be found in the program book. We sent, we put a link at the beginning, and you can see that on the event page, but I’d love for you, Dr. Amara, talk a little bit about how you got involved in this work; sleep, Parkinson’s, the role exercise plays, where how did this, how did you get on this path?

Amy Amara:

So, I knew from the time I was a neurology resident that I wanted to work with patients with Parkinson’s disease. And then as I learned more about Parkinson’s, I realized that there were actually quite a lot of sleep disorders in patients as well. And so, I decided to do a sleep medicine fellowship also. And of course, I was fascinated by REM sleep behavior disorder and its relationship to Parkinson’s, but then just realized more and more that that’s not the only thing related to sleep in Parkinson’s. Of course, there’s sleep fragmentation and insomnia and daytime sleepiness, and many different causes for all of the sleep problems in Parkinson’s so I’ve developed interest in studying sleep in Parkinson’s. And initially I was studying how deep brain stimulation affects sleep outcomes, but then as I moved forward, I got more and more interested in how exercise might change things.

And so, in collaboration with some of our exercise physiologists here at UAB, we did an exercise trial to see how it affects sleep in Parkinson’s. And we found that it definitely improved sleep. And we measured that with sleep studies, not just with questionnaires. So, we had people do sleep studies before and after a 16-week exercise intervention three days a week, and it was high intensity exercise and lot of white training, and it really improves sleep quite a lot and also increased the amounts of slow wave sleep, which is our deepest and most restorative stage of sleep.

Melani Dizon:

Okay, great. Well, I want to talk about absolutely every single one of those things that you just said. Okay. And also, I want to remind people to put your questions in the chat and we will, we’ll try to answer, you know, any of the ones that are related to sleep, sleep disorders today, and the role exercise plays in that. And then some of you have asked some questions and non-related topics, and I just want you to know that we have a lot of resources on stuff like that. I just saw that Jackie put something in the chat about those and we may have a webinar that we’ve already done or we’re going to do something in the future. So, we’ll stick to the sleep questions today. All right. So, what I want to talk a little bit definitely about that sleep study, because I know everyone’s going to have questions about what time, what type of exercise and the duration and all of that kind of stuff, but what is it, what is the mechanism of exercise that was so interesting to you?

Amy Amara:

So yeah, we’re still trying to figure out what exactly why exactly exercise helps us sleep. But several things have been proposed. One thing is exercise reduces inflammation. And so, we think that neuroinflammation may contribute to worse sleep. And so, exercise helps with that and that can definitely improve how we sleep and how well rested we feel, feel, and that leads to improvements in cognition. Also, the, both the improved sleep and the reduction in neuro inflammation. And then there’s a lot of good evidence. So just sort of as an indirect relationship, that exercise improves mood. And if you have better mood, you sleep better. People with depression tend to wake up early in the morning. If you have a lot of worries and anxiety, it can lead to trouble falling asleep at night and worsen anxiety, sorry, worsen insomnia. So, if you have improved mood related to exercise, certainly that can help with sleep.

Like I said, in an indirect manner and then exercise, it does also make you a little bit tired, so it can help with sleep onset just because you’re, you need more energy. And so, you fall asleep a little bit better just from the fact that you’re tired in our own work, like I said, we found that exercise directly increases the slow wave sleep, which is important stage of sleep for cognition. So, there are pathways that happen that I think are very exciting to, to make changes that way. And then we’ve also seen that exercise can change the brainwaves during sleep. So, make us have more sleep spindles for example, and that’s a feature of sleep that is important for cognition as well. So, it relates exercise through sleep to cognition also. And so that’s something else that we’re studying and looking into.

Melani Dizon:

Okay. Yeah. So, we didn’t talk about cognition much in the last session. I’d love to understand is like, is there a, is it chicken and egg thing? Is there, are there people that tend to have more cognitive decline? Do they tend to have worse sleep? And is this something that they’re actually totally unrelated and, but when you do improve your sleep, you can slow down cognitive decline. How does that work?

Amy Amara:

So, I think it’s probably there’s probably some degree of both things. So, you know, if you’re not sleeping well, of course you can’t focus as well and have poor attention because you’re just sleepy. People who are significantly sleep deprived actually can have micros sleeps while there, while they’re awake and it can lead to little brief losses of time and might make it so that if someone’s speaking to you, you miss words that they say, because you’ve had a little drop off to sleep that doesn’t necessarily get recognized by anyone who’s looking at you. So poor sleep can definitely affect cognition in that way. But then there are also aspects probably bidirectional aspects. If you have cognitive problems already, it can worsen your sleep. You know, there’s a lot of especially with advanced areas of cognitive decline with dementia you can get sundowning and more hallucinations during the evening hours and that can impair sleep.

And then there is probably a relationship between having more REM sleep behavior disorder is a risk or just happens to be an association with having worse cognitive impairment. So, there might be things related to that. So that, I definitely think there’s a bidirectional relationship, so one can affect the other, but then we also sometimes see that people who are at risk for cognitive decline might have a reduction in that risk if they sleep well. There was actually a study that followed people who didn’t have Parkinson’s or memory problems at the beginning of the study, followed them over six years and looked at how well they slept at the beginning of the study and the people who slept well at the beginning, even if they had genetic risk for Alzheimer’s disease, they were less likely to get cognitive decline if they slept well at the beginning compared to people who didn’t sleep so well. So there probably is a protective effect of good sleep on cognition.

Melani Dizon:

Great. Somebody asked you mentioned a sleep spindle. Can you talk about what is that?

Amy Amara:

So, sleep spindle is something that typically emerges in one of the stages of non-REM sleep, REM stage two. And so, we divide sleep into REM and non-REM, and REM is the part of sleep where we’d usually dream and that’s where REM sleep behavior disorder emerges, but non-REM sleep is also really important. And non-REM stage two is our most prominent stage of sleep through the night. It takes up more than 50% of the night usually. And during that sleep stage, we identify it by sleep spindles and another EEG feature called K complexes on the sleep study. So, we look at the brainwaves and if we see sleep spindles, that’s associated with non-REM stage two, and people who have more sleep spindles tend to have better cognition. And we’ve seen that in Parkinson’s disease as well. And the sleep spindles are developed in part of the brain called the thalamus. And they just seem to be important for memory consolidation and the relationships between the thalamus and the bigger part of the brain, the cortex. And so those relationships are important for getting those memories consolidated and keeping, keeping our function of cognition improved.

Melani Dizon:

Okay. so, can we dive a little deep into the study? Can you talk, talk to me about, you know, what exactly happened? Where were the people at baseline? What was the goal? And then all of the little pieces, like the duration and the intensity, and so, so that people can start to understand what sure.

Amy Amara:

Yeah, sure. So, we enrolled people of various different stages at, of Parkinson’s. We, because of the exercise and needing to stay safe to do that, we didn’t enroll anyone who always needed a cane or Walker, so everybody could walk independently, at least most of the time. And then we randomized to either the exercise intervention or a sleep hygiene intervention. So, since we were studying sleep is our outcome. We wanted to see if, you know, just a typical treatment for sleep might be helpful. And so, we use sleep hygiene as the control group, the non-exercise group. And so, everyone who was in the study for 16 weeks and before the study started, or before the intervention started, rather, we had a sleep study and various questionnaires and things like that. And then they did the intervention for 16 weeks and it was, if they were in the exercise group, they were exercising with a high intensity weight training that moved the participants from task to task without much rest.

So that contributed to it being high, high intensity, and also kept the heart rate up. So, there was an aerobic component to it as well. So, they came in three days a week and it was in the exercise facility. So, it was supervised, and they did that for 16 weeks and then had another sleep study at the end. And then the sleep hygiene group had a discussion about how they were sleeping and different strategies that they might use to try to improve their sleep on their own. So, we talked about you know, maintaining a consistent bedtime and wake up time. That’s important. Consistency is important for sleep. We talked about sleep relaxation techniques to try to help them fall asleep and stay asleep more easily or get back to sleep if they wake up. We talked about, you know, not drinking so much fluid after dinner in case having to pee at night was a problem.

We talked about, are there any risks for sleep apnea that they might have that could be evaluated and you know, various other things to try to help with improving sleep without having an exercise intervention. And so, we had those discussions and then checked in with them periodically to see if they had any other questions and how they were sleeping. And then we compared the groups from the beginning to the end. And so, each participant was their own control. So, we were able to compare how they were sleeping at the beginning to how that individual was sleeping at the end. And like I said, the exercise group had a big improvement in their sleep efficiency, which is the percentage of sleep, or, sorry, the percentage of time you’re in bed that you’re actually sleeping after you try to start sleeping big improvement in the exercise group and actually a little bit of worse sitting, we’re sitting in the sleep hygiene group. And then we also saw a big improvement in, like I said, in the, that deep, slow wave sleep, as well as the total amount of sleep time and a trend toward improvement in the sleep latency. So how long it took to fall asleep at the beginning of the night.

Melani Dizon:

Okay. And that was 16 weeks. Yes. what would you, what did you attribute the sort of regression to those people that were just doing sleep hygiene?

Amy Amara:

Yeah, we were surprised by that. And so, I don’t know if it’s just, you know, natural progression of Parkinson’s worsening   and that could be, although 16 weeks is not a super long time for that, but that maybe it. And the fact of being in the sleep lab, maybe there were some variables introduced that, you know, we don’t didn’t identify, however, both groups did the time in the sleep lab. So, not certain about that. But we did also do actigraphy. So, we found that the actographs for the two weeks that the person people were sleeping at home were similar to how they slept in the sleep lab. So, we think it was fairly reliable.

Melani Dizon:

Okay. What gosh, I’m getting distracted by this noise. The, somebody asked about actually this is a question that comes up a lot. They, and it’s a little off topic, but it is, does have to do with people going to sleep the, having to go to the bathroom and I was talking to somebody who is like, you know, sort of this breathing expert that is says, like, you know, tape your mouth, tape, your mouth shut because it’s it, your, your, your, your bowel is not the one that’s making you go to you. It’s not waking you up to go to the bathroom, but you wake up because for whatever, or you’re breathing or whatever. And then you’re like, oh, I might as well go to the bathroom and then your kind of all up. So, what can people, is there, is there anything that people can do around, you know, breathing the water? I think David talked; David talked about that earlier. You were like, you know, I don’t drink water before I go to bed. All of those kinds of things. So, is that part of the sleep hygiene?

Amy Amara:

So, it can be as far as when to drink water, I’m not sure about the taping, the mouth shut. I haven’t heard that strategy before, but there is good evidence that if you have untreated sleep apnea, that makes you have to pee more at night. Oh,

Melani Dizon:

Okay.

Amy Amara:

So, when you have obstructive sleep apnea, your airway collapses while you’re asleep and you try to breathe against that closed airway. And so, when that happens, your chest is still rising. So, you build up negative pressure in your chest, and those pressure changes in your chest actually make your heart secrete more of a home on that makes you pee.

Melani Dizon:

Okay.

Amy Amara:

So, so people with untreated sleep apnea do pee more at night. And so, if you have a lot of peeing at night, it’s a good idea to maybe, you know, think about whether you’re, if you’re also sleeping in the daytime, especially maybe get checked out for sleep apnea. And Parkinson’s the symptoms of that are not always the same as what they are in other adults. So, you might not be obese, but still have sleep apnea. You might not snore that much if you have Parkinson’s, but you still might have sleep apnea. So, it can be subtle and harder to identify without a sleep study.

Melani Dizon:

Yeah. And that’s just something generally hard unless you’re sleeping right next to somebody that is like awake all night while you’re not right. While you’re like taking those breaths. That’s tough. Yeah. Was anybody that was in the sleep study in the exercise group? Were they also taking anything else that were they just taking their regular Parkinson’s medications, or did they have to go off those or what?

Amy Amara:

No, they definitely kept on their Parkinson’s medications. And there is a study that’s going on right now. I don’t know if you already talked about sparks three.

Melani Dizon:

We haven’t talked

Amy Amara:

About that yet. Okay. So, there is an exercise study that is enrolling people who have newly diagnosed Parkinson’s and aren’t on medication yet. So, if anybody’s interested there, you could find the locations for that on their website. And it’s S P R X three. And it’s looking at, like I said, exercise for people who are newly diagnosed, so not on medications and sleep is not the specific outcome for that study, but it’s just different from what our study was, because we allowed all levels of medications. We didn’t exclude medications. We just wanted people to be on stable medicines through the study. So was

Melani Dizon:

There work that you found that for particular people that were on particular medicine that they actually did better in the sleep study, like adding exercise to what they were already doing?

Amy Amara:

Well, they had, we didn’t really measure the effects of the medication specifically because everybody was on such a different type of them. We couldn’t really distinguish the factors related to the medications. We did find that there were not significant differences, for example, in the amount of, and manic or Parkinson’s medications between the two groups. So, they were similar in the medications they were taking, but we didn’t look at the specific effects of exercise in the setting of certain medications.

Melani Dizon:

Okay, great. So, let’s talk a little bit about general exercise, duration, intensity consistency what you said, you know, you, this was weight training. That was obviously it was high intensity. It was getting there, aerobic up. So, it wasn’t just like a set. And then there, you know, sit down for a while. And so those were, it was like you combined everything   what about things like walking? What can people do that’s actually going to help them or does it have to be, you know, super intense?

Amy Amara:

So, we think that high intensity is probably better for cognition and probably better for sleep. Although there have been very few head-to-head studies comparing different intervention types. The sparks three study that I mentioned is comparing higher intensity treadmill, walking compared to lower intensity or moderate intensity. And they’re measuring that by the heart rate reserve or the how high your heart rate gets. So that I think is something that a lot of things still need to be figured out, but we definitely know that, you know, doing something is better than doing nothing. And so, what a, we usually tell, tell patients in clinic is that you should do the thing that you enjoy, because if you enjoy it, you’ll keep doing it. And that’s the most important thing is to do something that you’ll keep doing. So, if you really hate running, or don’t make that your exercise of choice, you know, if and if you prefer walking, but can’t get behind getting on a bike, then, you know, go for a walk it’s better than sitting on a sofa. So, some exercise is better than none. If you enjoy something that really gets the heart rate up, that’s probably better. And the world health organization, no, that’s not the I’m forgetting now, is it which organization? I think w H O gets behind it too, but I can’t remember right now, which organization it is that recommends this, but 150 minutes per week of low to moderate intensity exercise, plus two days of weight training. Have you already gone over this?

Melani Dizon:

No, we haven’t.

Amy Amara:

Oh, okay.

Melani Dizon:

I mean, for somewhere else we have, but not today.

Amy Amara:

Okay. Or if you’re doing high intensity exercise, you can do 75 minutes a week and probably get the similar benefit with, again, two days of weight training. So doing some number of weights is important too, but again, whatever you do is better than nothing. So do what you enjoy. And that brings, you know, that brings, it can be, bring a social aspect so you can enjoy hanging out with other people. And that also increases motivation because if you know, someone is waiting for you to show up at the gym or where you’re going to walk or whatever it is that increases likelihood that you’ll get there. So having an exercise buddy can help. And then also just things that you find relaxing and soothing, those are the best types of exercise. Give yourself time to think to

Melani Dizon:

Right. Yeah. Sleep and exercise have so many downstream impacts right. So absolutely it’s just going to like help everything. But we do have a couple people asking about someone says I walk every day, but I can’t go fast enough to raise my heart rate. How can I raise my heart rate? And then similar to that, somebody asks, what do you do when at 76, you’re too old for high intensity.

Amy Amara:

So, to start with the second question, I’m not sure anybody’s too old for high intensity. Of course, you have to build up to it slowly. But the participants we enrolled in our exercise study who did this high intensity intervention. We had one who was an 85 when he enrolled. So yeah, you may have other health situations that make you, you know, everybody has to be safe and take it slow and do what your doctor recommends. But if you get into it and increase the intensity over time, everybody can get there. You just have to, you know, may have to have some encouragement, and support a personal trainer type intervention or something like, you know, the park boxing for Parkinson’s disease. They have a lot of support that can help guide you in increasing the intensity. So, if you can’t, you know, if you really can’t feel like you can get to a high intensity, again, anything that you can do is better than nothing.

If you want to do a little bit more than walking to get your heart rate up you might do something like a floor cycle. I think these are a really neat idea. They’re just pedals. You put on the floor in front of your regular chair. So, you don’t have to spend the money and take up the space needed for a stationary bike and it’s comfortable and easy for balance. And then you can also put it up on the table and pedal with your arms. And if, you know, you can go faster and faster without any worry about your balance or falling risk and things like that, which are of course is so important. You want to be safe when you’re exercising too. So that’s some ways some people really like swimming or like aerobics in the, in the water can be really helpful for helping to get your heart rate up because there’s a lot of resistance from the water, but it’s also a safe place that prevents falling.

And then if you really are, feel like you’re working hard, but your heart rate won’t get up. Maybe talk with your doctor about if any of the medicines you are on are preventing your heart rate from coming up. Some medications are designed to keep the heart rate low, like beta blockers, for example. And so, if you are on medications like that, you may want to talk with your doctor about if, if that’s really what’s needed and it may be, but they may have other strategies for helping combat that inability to exercise with the higher heart rate.

Melani Dizon:

Yeah. Someone said they take medicine for high blood pressure, so they can’t get that up. Yeah. Yeah, so, you know, that’s a tough one. You need, you need to, to be healthy, but what can you do, right. I mean, it is there’s always going to be a spectrum, right. And there’s the ideal that is okay. I’m hitting my 75 minutes of high intensity every single week. I never miss a session. I wake up, I get exercise every day, I get light therapy. I do all of those things. Everything’s fabulous. Right. And then the other end is doing nothing. And so, anything along that spectrum is better than the doing nothing spectrum. Right? Absolutely.   and the other great thing about intensity, if you could speak to this, is that it doesn’t have to be like, it doesn’t have to be done all at once, right? Is there benefit for people to be like, oh wow. I just, like, better spread it throughout the day. Or I go in my garden, and I do some really heavy thing gardening for five minutes, and then I’m tired and I go back, like, how does that work?

Amy Amara:

Yeah. And, you know, with Parkinson’s, a lot of times I hear a lot of people tell me that they, you know, if they exercise really hard, then they are completely useless the rest of the day. And so, you have to, you know, achieve a balance for what works well for you and how you feel. You don’t want to make yourself feel worse with your exercise. So, you know, having little bursts of exercise I think is a great idea. You know, you can get on the bike and pedal fast for five minutes and then have some rest and relaxation and maybe do it again later the day. And I think spreading it out is just fine. Again, something is better than nothing. So, if you can’t achieve that 75 minutes or the 150 minutes then, but you can achieve, you know, 10 minutes every day. That’s fantastic.

Melani Dizon:

Yeah. Great. And actually, oh, excellent. Jackie just put up a link. I did had a recent conversation with Mike Studer, and he talks about neuroplasticity, and he talks about a million different ways to get those few minutes of intense exercise in. Yeah. That is great. So, here’s another question that we get about, so we are, hey, exercise helps with sleep, but for some people they exercise and then they can’t go to sleep. So, is, did you, have you learned anything in your research that is, hey, you should, if you, if sleep is trouble, make sure you don’t exercise such and such hours before you go to sleep or, and is there any, has there been any research around where sleep is beneficial? If you wake up and is part of your circadian clock that you exercise right away, like that’s helpful for sleep or how does it work?

Amy Amara:

Yes. Exercise certainly can help and train the circadian clock. And I know Dr. Videnovic just talked about that extensively. Probably. I didn’t hear his talk, but I know that’s a big area of his research. So, exercise does allow your body to know and your brain to know that it’s daytime basically. So having morning exercise, I think, is good for several reasons. It helps with that aspect, but then also it helps you become more alert. Exercise is not only good for sleep at night, but also helps you be more alert during the day. And sometimes when people with Parkinson’s have a lot of daytime sleepiness, I encourage them to do exercise at the time they tend to be most sleepy. And maybe that will offset their need for a nap. Not the napping’s always bad, just if it’s excessive or prolonged, it can be so disruptive to your plans for the day.

So, I tell people to schedule their naps and also schedule their exercise. So, it’s kind of the same time every day. And a lot of times the sleepiness comes from medications. And so, you can adjust that timing of the exercise to help with that. As far as certain times of day to exercise, you know, that for a very long time, it was thought that evening exercise is disruptive to sleep. I think that’s been called into question a little bit. I haven’t specifically looked in our Parkinson’s patients about the time of day and our research, how it’s affected sleep at night. But if, you know, kind of just gauge how you feel, if you notice that you exercise too late in the afternoon and you don’t sleep as well that night, then, you know, maybe adjust the timing. Or if you find that it does help you sleep better, then you know, some that may be true for some people.

There is some aspect of exercise increasing the body temperature and the temperature gradient can help you fall asleep at night. So, as you go from a higher temperature to a lower temperature, it helps you get into that deepest REM stage three sleep. So there actually maybe some, some benefit, and that’s why warm baths at night can be helpful. And then one other important aspect is that a lot of people with Parkinson’s have restless leg syndrome. And if you tend to be sedentary and then you have a really heavy belt of exercise, let’s say you go for a hike that you’re not used to, or you do something really intensive around the house. It may actually make your restless legs worse that night. So, keeping a more consistent exercise program is important for restless leg syndrome. Did I get at your question with

Melani Dizon:

Those? Yeah, you did definitely did. Somebody said, or, yeah, someone says, I do chanting mantra be 15 minutes before sleep. It helps me to fall asleep and calm down. Somebody says, what about steps? I hear so many talk about the importance of 10,000 to 20,000 steps. Is there, is this really helpful or is it it’s not in, you know, it’s better than nothing again. But if, if I were going to, if you were going to say, hey, you should spend, it’s more important for you to get your 10,000 or 20,000 steps or for you to have intense exercise. One 10th of the time, what would you say on that?

Amy Amara:

I think having some intense exercise probably is important, at least as far as the data that we have. There have been studies looking at large studies looking at people who exercise and risk for developing Parkinson’s and that high intensity exercise has been shown to be important for either delaying or preventing that risk. So, we assume that it would also be important once you’ve been diagnosed as far as the number of steps you know, it’s nice to have a goal for that. If you, you know, if, if walking is your main thing, especially if that’s your main form of exercise, then achieving those goals every day. Not, not specifically just for that number, but because it’s motivating, like I have an apple watch and, you know, it gives me a calorie goal for every day. And so, I feel motivated to exercise more to meet that calorie goal because it’s, you know, it’s just a feedback. And so, so having that for your steps, I think can be helpful. If the type of exercise you’re doing involves stepping, so it can be used as motivation for sure. But if you don’t achieve that you know, and you, but you went for a long bike ride and you’re not stepping, then that can be certainly just as, or maybe even more beneficial.

Melani Dizon:

Right. did you get any, what was some of the anecdotal or survey responses from people who were in the study that their, you know, their sleep study came out positive afterwards? What were some of the other things that they said, this is, this has changed in my life, or this has helped or anything like that?

Amy Amara:

Yeah, it was so rewarding because we got so many letters from people about how the exercise program had changed their lives. And they were going to, you know, continue doing it after the study was over. We gave gym memberships for 16 weeks to people after the study ended, even the sleep hygiene group. And so, it was rewarding to see get feedback, too, of people continuing on and doing their exercise. Other people went on to join the boxing for Parkinson’s programs and various other things. And so, it really has been welcome feedback for us and makes, you know, it’s very rewarding to do the research and then find out that people really do feel like it’s helping them. So that has definitely been rewarding. And we’re doing we’re doing a new study now where we’re looking more at how changes in sleep may improve cognition due to exercise. So, we are recruiting people for that study now and similar feedback. We’re getting a lot of positive feedback for about how much the exercise helps.

Melani Dizon:

Okay, great. And was that, is that going to be out of university of Colorado or is that going to be Alabama or

Amy Amara:

It will be moving with me to Colorado.

Melani Dizon:

Okay, great. So, we can, we’ll, we’ll definitely share that link with people for that study so they can learn about it. And you’re, you’re in the area. Are you just recruiting in Colorado or everywhere?

Amy Amara:

Just Colorado.

Melani Dizon:

Okay, great. We have a lot of Colorado people here, so hopefully can fine about that. Interesting tennis and golf helpful, but serve mechanism is not working well. That, yeah, that is interesting. There’s a lot going on in Teer. I played competitively for much of my life, so there’s a lot going on there. I can see where that would be. Like, it’s that memory of it is the muscle memory gets lost. And just, it’s interesting. I hadn’t thought about that.

Amy Amara:

Yeah, I’m sure that’s very frustrating. And you can maybe find a partner who will do the serving all the time.

Melani Dizon:

Right? Or pickle a ball. You don’t have to serve overhand. Yeah. Let’s talk a little bit about sleep. Yeah. Ping pong or pickle ball, Polly. Exactly. Let’s talk a little bit about sleep hygiene. Can, can you go through maybe some let’s say no, let’s say people don’t have any sort of sleep hygiene at all. Can we talk a little bit about what are some, like maybe one thing they could try this week and then add on like over time instead of being like, you have to do all these things right now, what is good thing to start with?

Amy Amara:

Okay. Exercise. Yeah, but, we’ll pass that one. So also having no electronics in the bed, you really want to train your brain, that your bed is where you sleep or have sex and nothing else. So, you want to not worry in bed. You want to not pay bills or work in bed. Certainly, never have your laptop in the bed. You know, some people read in bed and find that relaxing and they have no sleep problems. And then, you know, that’s fine read in bed, but if you are having sleep problems, then really having good sleep hygiene, and making your bed only for sleep is very important. And the other thing it is kind of can look at it on the flip side as well, if you are in your bed, trying to sleep, but unable to sleep and becoming frustrated about not being able to sleep, you really should leave your bed.

And now, you know, sometimes if you have walking problems in Parkinson’s and you’re unsafe to get out of bed, sometimes you can’t do that. But if you can, if you can get up out of bed and safely get to a different room, sit down and a fairly darkened room, you don’t want to have the light exposure that of course is alerting and will wake you up. And you know, do something you find relaxing until you feel drowsy and then go back to bed. And that way you take that stress association away from your bedroom. And cuz you want to train again, train your brain, that the bed is where you sleep, and you don’t lie there awake. Don’t look at the clock that can be really stressful. So, if you glance at the clock and realize, oh my gosh, I’ve only slept an hour.

Then you become very frustrated. Or if you realize you’ve only got an hour left to sleep, it makes it again more stress. So, it’s harder to go back to sleep when you’re stressed. And there are some sleep relaxation techniques that you can do. One of my favorite ones is called progressive muscle relaxation. And so, it has you really focus on counting while you’re inhaling to a slow count and exhaling to a slow count. And every time you exhale, you focus on a specific body part and think about that body part becoming really relaxed and really heavy and so relaxed. You couldn’t even lift it if you had to. And then as soon as that body part’s relaxed, you move forward to the next body part. And I always start with my hands. And usually by the time I get to my shoulders, I’ve fallen asleep.

But if you’re doing the counting it kind of distracts you from thinking of worrisome things and keeps your mind focused on that. And plus, it’s relaxing can, can help you fall asleep, and you can do it at the beginning of the night, or if you wake up during the night or any other time we talked about trying to control, you know, urinary symptoms. So, if you can find strategies to help avoid having to pee at night. So, things that will wake you up with Parkinson’s you might need an adjustment in your medications. Like maybe you’re waking up because your body is stiff, and you can’t roll over when you get uncomfortable because you’re having that slowness of movement. So maybe you need a little bit more medicine to last through the night or some medications lead to insomnia. So, you might want to talk with your doctor about, you know, what you think this the trouble is with your sleep or troubleshoot that with your doctor.

Melani Dizon:

What are some of those medications that you know of that that tend to make, you know, somebody who may have had a normal sleep once they have this medication, they just get kind of falls apart.

Amy Amara:

Well thinking specifically of Parkinson’s related medications. So, Levodopa or Sinemet, it actually can cause insomnia in some people, but then again, in other people, it really helps with sleep because it improves the motor symptoms. So, you just have to maybe do some experimentation with it, with your doctor’s help about, you know, whether it’s better to take it at night or not. Amantadine and Selegiline or both Parkinson’s medications that can lead to alertness. And so, if you take those two close to bedtime, like they’re supposed to be given two or three times a day, depending on which one you’re taking. And for both of those medicines, we like them to be, you know, for Selegiline, have it morning and noon. And for Amantadine, if you’re taking it three times, like morning, noon, and 4:00 PM or no later than that. So just to keep those earlier in the day to avoid insomnia and then there’s some antidepressants that can lead to insomnia depends on what ones you’re on. There are some antidepressants that actually help with sleep onset. And so that can, you know, be something that you could talk with doctors about. And then you, the main alerting medications might be things like stimulants. But those are the main ones that come to mind as far as might maybe disrupting sleep at night.

Melani Dizon:

Okay. What about sound? How I sound okay. You know, we want to turn off the phone and do all those things, but what about maybe somebody listening to the progressive muscle relaxation, sometimes they do that, or they have all these really funny sleep with me podcasts now that are just gibberish and they’re, they’re not really saying anything, but they lull you to sleep. Is there anything around auditory that is problematic for, for trying to get sleep?

Amy Amara:

If, you know, if there are large fluctuations in the noise that could be a problem because if there’s a big volume change or a change in intensity or stress of the speech, it, you know, could be disruptive. Dogs, dogs barking is a big one. If you can avoid that. Some people really do like white noise machines or soothing sounds and that’s, I think those are completely fine. It might be a good idea to have a timer on them so that they, you know, cut off and stop so that if you do get into the, into sleep, but you have a near arousal, it doesn’t bring you completely to alertness trying to figure out what the noise is. But yeah, if it seems to be helpful, that, and that goes for a lot of things in sleep, if it seems to work well, then that’s a great thing to do.

Melani Dizon:

Right. Great. Oh my gosh. We’re out of time. Let’s see. Okay. Using sleeping pills what have you found in your research about sleeping pills? Yeah, I mean there, whether short term use long-term use effectiveness, that kind of thing.

Amy Amara:

So, the most thing that we use long-term is when people have REM sleep behavior disorder and need treatment for that, a lot of times the medications we use induced sleepiness just as an additional effect. And then some of the medicines we use for restless leg syndrome can make you sleepy. And so that can contribute. But as a sleep doctor in general and my colleagues in sleep, at least in our practice, we very seldom prescribed sleep aids. And when we do it typically is for short term, like if someone’s newly diagnosed with sleep apnea and having trouble getting used to C-PAP, that’s a situation where we often do prescribe sleep aids for a few weeks. And even if we do prescribe sleep aids we tend to say, you know, don’t take them every night, maybe do two or three nights a week.

Now that being said, there is some degree of comfort that can come from knowing that you have a sleep aid available. So sometimes if someone’s been on a sleep aid and we try to taper them off, I always, or not always, but often allow them to keep, you know, a few a month’s so that they just know that they have it if they need it. Like if there’s a big event coming up the next day and they really need to have a good night of sleep, they’ve got that available. Or if they’ve had several nights of bad sleep, they know that they can use the at medicine if they need it. And a lot of times just knowing is there will allow people to sleep well without even needing the medicine. You know, sleep is very psychological. You have to be relaxed and calm and comfortable and happy.

Well, not happy necessarily, but you have to feel relaxed to be able to fall asleep. And so, if you’re anxious and, you know, having stress related to sleep, it actually a lot of times leads to worse insomnia. So, one of the other strategies that we often use is trying to tell people to stop thinking about sleep so much, because it, when you’re in, when you have insomnia and you don’t sleep well, you feel bad during the day. So, you think about sleep and how bad it was. And, oh my gosh, what if it’s terrible tonight too? And so, sleep becomes the focus of your life and that’s very counterintuitive for falling asleep. So, trying to come up with strategies to avoid that. And you mentioned earlier about the app, you, or an app for falling asleep, the noises, but there’s also one that we use sometimes called CBT I coach.

And its CBT, which stands for cognitive behavioral therapy and the is insomnia and then coach. So, there’s a cognitive behavioral therapy has definitely been found to be more effective than sleep medications for sleep. And that’s because it doesn’t lose effectiveness over time. If you stop using the techniques, you can always restart using them if your sleep gets poor again. So yeah, CBT I coach is an app you can get, and it goes through some of the sleep relaxation techniques. It’s got an area in there that you can record when you’re sleeping, I think, and just varied various different measures. And then if you have one in your area, you can also try to see a psychologist who does CBT I treatment. And that’s very, very effective.

Melani Dizon:

Yeah, absolutely. We will. We’ll share some of the resources that we have on that for sure. And then also lots of people have been asking about CBD medical, marijuana, those kinds of things. We’re not going to talk about that today. We do have a bunch of information on that. It continues to be the thing that everyone’s really excited about, but there’s no hard research that says that this is going to be the thing, or this is working. And so, we don’t spend too much time on it. We would prefer for you to work with your doctors on that and try it. If, if you, if you feel like that’s something that you want to do, but we just, we don’t have the research to share. So, we don’t want to talk about it too much. But I really like the idea somebody says, how about getting off of any sleep aids?

And I think that the takeaway here is that not pretending sleep is easy and people tell us, they can tell us a million times you need sleep. You need to get sleep. It’s the most important thing. And it’s just frustrating for people who cannot get it. And so, I think one of this, you, you talked about, don’t think about it too much, and they’ll be too negative about it. My friend and I both of us have not been great sleepers our whole lives, but we always, now we’re like, oh my God, stop great. I’m a great sleeper because like stop telling the world and yourself that you’re a terrible sleeper. Like I’m a great sleeper. I don’t know if it’s going to do anything, but we’re trying it out. So maybe try that out. And also, you know, a lot of really great tip is pay attention to the time you’re going to bed, exercise, light therapy you know, blackout rooms, no light in your room, get off your screens and then see if you can do all of these little things.

And then eventually maybe they’re going to help. And then you can get off some of those sleep aids with the help of your doctor. So, I know it’s tough. I know it’s frustrating. But I think we had really great information today, Dr. Amara. I really appreciate you being here, and I cannot be more excited that you’re coming to Colorado. So, we’re going to have more conversations for sure. And we’ll share the link to that study and everything else. So great. Thanks so much for being here. I really, really appreciate it.

Amy Amara:

Thanks to everyone.

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