Expert Briefing: Managing Nighttime Interruptions in Parkinson's Disease

Dr. James Beck 00:00:00
Hi everyone, and welcome to the Parkinson's Foundation Expert Briefing. This is the third in our six-part series for the year. I'm Dr. James Beck, Chief Scientific Officer of the Parkinson's Foundation, and it's a pleasure to have you with us today. Today's briefing is going to cover issues around three prevalent nighttime interruptions: restless legs syndrome, REM sleep behavior disorder, also called RBD, and insomnia. We all know that these are things that can affect individuals with PD and their care partners. So this session will provide an in-depth look at the causes, symptoms, and practical management strategies for these sleep disorders. But before we get started, what we always like to do is get a sense of who's joining us today.

On your screen, a little poll should have just popped up, giving you the opportunity to tell us your connection. Are you a person with PD? Are you a care partner, a spouse? Do you have a family member or loved one with Parkinson's? Or maybe you're a health professional who's also interested to hear some of these discussion points we'll have today. Feel free to click through that, and in just a moment we'll get a chance to see who's here. We've got a growing audience as people come in, and not surprisingly, we see a lot of people who are living with Parkinson's, as well as their care partners maybe joining us as well, and then a good number of physicians and healthcare professionals. Welcome everyone to our expert briefing today.

Before we begin our expert briefing tonight, I'd like to take a moment to introduce the Parkinson's Foundation. As a nonprofit organization, we're dedicated to improving the lives of those living with Parkinson's by enhancing care and driving research forward. Our efforts are deeply rooted in collaboration with the Parkinson's community, ensuring that everything we do aligns with the needs and priorities of those living with Parkinson's. Today's program is just another example of how we're working with you to meet these goals. One of the things we do at the Foundation is invest in research.

We've invested over $450 million in research and care to improve the diagnosis, treatment, and scientific breakthroughs for Parkinson's disease. You might be able to see that in the next slide. One of our key initiatives, PD GENEration, offers free genetic testing and counseling to people with Parkinson's disease. By participating, you can learn about your genetic connection to Parkinson's and contribute to research that drives treatments, hopefully new treatments, and one day a cure. We encourage everyone to share this opportunity, and if you haven't taken part in it, I think you should. Together, we can make a difference because at the Foundation, we invest in both research and care for those living with Parkinson's disease.

As a friendly reminder, today's expert briefing, as all of them are, is recorded and will be available online shortly. There's no need to check back to our website to see if it's posted. If you've already registered, we'll email you a link to the recording, as well as some other resources related to today's topic. You can have that as your reference, go back and watch it at your leisure, and share that with other people who haven't had a chance to partake in this expert briefing as part of the process.

Today's expert briefing and our PD Health at Home series is presented to you by the Light of Day Foundation, whose generosity has made this programming possible. I'd like to give a shout-out and thank you to the Light of Day Foundation for their support.

Today we're honored to be joined by our expert presenter. Dr. Roneil Malkani is an associate professor of neurology at Northwestern University and a neurologist at the Jesse Brown VA Medical Center in Chicago. He specializes in sleep and movement disorders, with a focus on sleep and circadian rhythms in Parkinson's disease, dementia, REM sleep behavior disorder, as well as restless legs syndrome. Dr. Malkani serves on the board of the Illinois Sleep Society and has contributed to national committees for the American Academy of Neurology and the American Academy of Sleep Medicine. Dr. Roneil Malkani, thank you for joining us today.

Dr. Roneil Malkani 00:03:54
Thank you for the introduction and the invitation to present. It is an absolute pleasure to be a presenter here for the Parkinson's Foundation Expert Briefings. It's a way for me to be able to reach people who want to know more about sleep in Parkinson's disease, how we can make it better, and how we can improve people's lives with that.

I will share my slides in a sec.

We're going to focus today on nighttime interruptions in Parkinson's disease. There are many different sleep problems that can happen, and I'll briefly touch on that, but we're going to talk a little bit more about some of these nighttime issues that occur.

As far as disclosures go, I have none relevant specifically to this presentation. As mentioned earlier, I also work for the Department of Veterans Affairs, and I do not speak on behalf of the federal government.

These are the learning objectives that were presented with the flyer and the talk. We're going to be focusing on restless legs syndrome, REM sleep behavior disorder, and insomnia, and how this impacts our quality of life and learning. What are these disorders? How do we manage them? And when do we get help?

Let's start first with: why sleep? Why is this important anyway? One of the founders of the field of sleep medicine said this about sleep: if sleep does not serve an absolutely vital function, then it is the biggest mistake the evolutionary process has ever made. We're supposed to be spending about a third of our day sleeping. It's got to be doing something really important. In fact, there's been lots of research showing that sleep is not just for the brain. Yes, it is very important for the brain, but it supports the whole body: support for our heart health, gut health, metabolism, immune function, all across the board. It is very, very important to value sleep so that we can not just function better from a cognitive and movement standpoint, but for our whole body.

I often start these talks with an example of a type of case that I would see in my sleep in Parkinson's clinic, because this helps set the tone for some of the things that we deal with. This is an amalgam of cases I've seen, not just a single patient, but this is a very typical case I might see. A 63-year-old man with Parkinson's reports sleepiness during the day, but also difficulties sleeping at night, taking several naps unintentionally. The naps can be an hour or two, but he is still feeling tired.

There are a lot of problems with the sleep at night that contribute to this too. He reports difficulty staying asleep. He can't sleep for more than two or three hours because maybe he is going to the bathroom in the middle of the night, has difficulty turning in bed, or maybe there are joint pains. This highlights not just that there are disruptions in sleep at night, and they can vary in terms of causes, but there's nighttime urination, maybe some more motor slowness or stiffness from the Parkinson's disease that affects the comfort in the bed, and also joint pains associated with aging and arthritis.

There are a lot of different factors that can contribute to this and not just impact how we sleep at night, but our functioning during the day.

Dr. Roneil Malkani 00:07:57
Sleep issues are extremely common in people with Parkinson's disease. If we look across any sleep issue, how common is it? Up to 98% will report some issue of sleep disturbance at some point. It is very, very common, but everyone's a little different in what particular sleep problem they have. There are many different types. There can be more problems with difficulty falling or staying asleep. Sleep fragmentation, particularly, is one of the most common things that we hear about. There are circadian rhythm or internal clock issues that can happen, daytime sleepiness, sleep apnea, REM sleep behavior disorder, which is where people will act out their dreams and maybe have very vivid dreams, and restless legs syndrome.

We'll be touching on a few of these things, not all of them, but all of these things taken together, or in whatever combination, can really impact quality of life because it goes to how rested you are, how you feel during the day, the cognitive function, the motor function, and just quality of life and feeling well. Many of these things can also impact caregivers, not just with how one functions during the day, but also the disruptions at night.

There are many reasons why this can happen in Parkinson's disease. The schematic here on the left is showing some of the anatomy of the brain that's involved in the sleep and wake cycle. In particular, this is in wakefulness, but there are a lot of different parts of the brain that are involved in regulating sleep and awake. Some of these occur even in the midbrain, which is the main area that's affected in Parkinson's disease, but others can be affected in the brain stem as well. Issues in these areas can affect our ability to sleep and stay awake.

There can also be changes in our internal clock. There have been a number of studies showing this now. But there are other things too. Depression, for example, is more common in people with Parkinson's disease. It's also more common with aging. There are many medications that are involved and other factors, like arthritis, that can disrupt our sleep.

When we try to tease this out, it actually can be this sort of complicated web of circadian rhythms and sleep, which we can talk about separately, but they often go hand in hand. Then there's the neurodegeneration that occurs in Parkinson's disease and how these two interact with each other. This is most likely a two-way street. It's not just that the changes in the brain lead to these problems, but there's some new data showing that these sleep problems can maybe affect the neurodegenerative process as well. But these two together can cause sleepiness during the day and insomnia. One can also induce the other, and there are many different contributors to these, including sleep apnea, medications, underlying mood disorder, going to the bathroom at night, restless legs, and others. It is this complicated web where one thing can feed into the other.

Dr. Roneil Malkani 00:11:23
Let's talk more about these nighttime interruptions that occur. We're going to talk about these three today: restless legs syndrome, REM sleep behavior disorder, and sleep fragmentation and other insomnia. I'm going to go one by one, covering everything about restless legs, then REM sleep behavior disorder, and then sleep fragmentation and insomnia. I'll delve into what it is and management strategies for each.

Let's start with a couple of cartoons about restless legs syndrome.

I include these because restless legs syndrome has gotten kind of an interesting reputation. Some are not sure that this is actually a real thing because of the name restless legs syndrome. It kind of sounds almost made up, but it is an actual condition, and we understand the physiology behind it. This has also been known as Willis-Ekbom disease because that's actually what it used to be called before it got this name. But I will continue to call it restless legs syndrome, or RLS, because that is how most people know it.

What is restless legs syndrome? The diagnosis is actually made purely based on the story. We think about it with its acronym, URGE. There is this urge to move the legs. There can be this uncomfortable sensation. Everybody is a little bit different. It can be some tingling, burning, achy, creepy-crawly, or just uncomfortable, and people can have a hard time describing what that is. Regardless of what kind of sensation, there has to be this urge to move the legs, this kind of need to move.

Resting makes it worse, and so we see this especially at night when getting into bed, but maybe even sitting on the couch watching TV, in a long car ride, or on a plane. When you're sitting for a long period of time where you can't really move, it can come out in some people. Getting up and going, or movement, makes it better. As soon as you can get up and walk around, it gets better, at least for the time that you're moving. That can last for a while, but for some it only lasts as long as they're moving. And it is evening predominant. This happens mainly at night when getting into bed or maybe in the evening when winding down. If this happens all day long, there's no variation, and there never has been a variation day versus night, then it would not be typical for restless legs.

There are many causes for this. The most common ones that we see, other than it just happens in and of itself, are iron deficiency and medications, typically antidepressants. Not all antidepressants, but some of them do this. Some people just have this regardless of these causes.

Dr. Roneil Malkani 00:14:25
There's been this question about Parkinson's disease and restless legs syndrome: is there a link between the two? The reason is because the medications that we have used for Parkinson's disease also work in restless legs syndrome. They're both dopamine-acting medications. This led to this question of, are people more likely, is restless legs tied to Parkinson's disease, or do people with restless legs develop Parkinson's disease down the road? The issue with this is that the underlying causes are very, very different.

People with Parkinson's disease have a loss of the dopamine-containing cells in their midbrain. But in restless legs syndrome, actually what we're seeing is that there's more dopamine production. It's just that the signaling in other areas of the brain is affected, and the medications are used to boost that signaling rather than replace the effect of the dopamine that has been lost. So there is a potential link, though.

In people with restless legs syndrome, when we give these dopamine medications, after a while the signaling actually can get a little bit worse and can cause what we call augmentation of the restless legs syndrome. This is where the symptoms actually get worse and start earlier.

It could be that people with Parkinson's disease may have restless legs syndrome, but we may be seeing more of this effect from the dopamine medications. Unfortunately, we can't just stop the dopamine medications because you need this for the movement aspects of the Parkinson's. We need to find new ways to address that, and that's one thing that we do in the clinic as well.

When it comes to treating restless legs, there are lots of different treatments that we have available to us. The first thing we always do in the clinic is evaluate the iron levels. It doesn't have to be very low to consider it low enough to treat it, because people with restless legs syndrome need a little bit more iron in their blood to get enough of it in their brain. My first line is always addressing iron deficiency with either oral iron or intravenous iron.

The next line of treatment are alpha-2-delta ligands, and these are things like gabapentin and similar medications. These are the first line, and they do work pretty well for most people. But some people can have a hard time tolerating them, or they don't work, and then we have to try other things. The dopamine medications are ones that have typically been used in Parkinson's disease and, for a long time, have been used in restless legs syndrome as well. These can be very helpful.

In people who don't have Parkinson's disease, we actually tend to avoid these now because of some of the complications I mentioned, the issue with symptoms getting worse over time. But we can still use these in a pinch if we really need to. In people with Parkinson's disease, some of these medications are already being used. We can't just come off of them, and sometimes we have to adjust the timing and the dosing, which type of medication, etc., to try to help control the restless legs.

Dr. Roneil Malkani 00:17:52
There are some other ones that we use as well. In severe cases, there are some long-acting opioids that can be helpful and a few other medications. In addition, there's a new treatment that is now available. It is recommended in the new guidelines for restless legs syndrome, which came out last fall. It is a non-medication strategy called tonic motor activation, or TOMAC.

This is a nerve stimulator that is worn on the leg below the knee, and it provides stimulation for 30 minutes. It can be used multiple times a day, typically 30 minutes when you get into bed, and then it turns itself off. Then, if you wake up in the night and you need some more, you can turn it back on again. This is something that requires calibration, so there is a process involved. You can't just get it and start wearing it. But this is FDA approved for moderate to severe, and is available in many states, not all states yet. They're making the rounds to get the approvals in each state. There's a process involved, which is why it's taken some time, but this is a treatment that people are already using for this.

I'm going to move on to REM sleep behavior disorder now. Again, if there are questions that come up about restless legs syndrome, we'll address those at the end. If there are questions about other sleep issues that I don't cover, those can also be addressed at the end.

Let's talk about RBD, or REM sleep behavior disorder. Let me provide another story here because some people with Parkinson's disease have this, and some people don't. Just to set the stage so everyone knows what I'm talking about here.

In this case, we've got a 69-year-old woman with Parkinson's who reports acting out dreams in her sleep. The events that are reported are things like pounding on the bed, screaming, and talking in harsh or profane language. In doing some of these things, she's fallen out of bed a couple of times, hit her head, and broken her toe once, so there have been some injuries. There's no bed partner, but if there was a bed partner, we would consider potential injuries to them. These occur more in the second half of the night, and that's actually when the REM sleep tends to occur more.

When asked about what kind of dreams she's having with this, she's like, you know what, there are a lot of variable dreams. Sometimes they're about packing up and leaving, or school, or someone she used to date, but there's nothing violent. Many times when we hear about these dreams, they tend to be more about being attacked or chased by an attacker, an animal, or a person. Or they can be about sports and something exciting. She didn't have those, but she does recall having a lot of dreams.

Dr. Roneil Malkani 00:20:46
This is typical of something called REM sleep behavior disorder. REM sleep is the stage of sleep that is most associated with dreams. So anything about, "I'm having a lot of dreams," or vivid dreams, that's typically REM sleep.

What happens is that when we're in REM sleep, there's a switch in our brain that paralyzes our body for the most part. It's a protective mechanism so that our brain is dreaming, but we're not actually acting on our dreams. Our bodies are saying, we'll stay still, maybe with little twitches here and there, but nothing more than that. But in people with this condition, that switch fails, so our bodies are not consistently paralyzed. It allows our body to actually manifest the things that we're dreaming about while we're actually dreaming about them.

And this is not something that is constantly off. This can vary in terms of frequency. It can come and go. These dreams get acted out, and that can raise the risk of injury to oneself and to the bed partner. It could be falling out of bed or punching the headboard. These things can be aggressive and fighting. They can be mild, with just some mild movements, but they can be fighting and punching and screaming because many of the dreams can happen like that. These things can occur once in a while, many times a night, or anywhere in between, and they can ebb and flow.

They can get worse, and they can get better over time and then worse again, and so on.

If we look at how frequently this happens in Parkinson's disease, almost half of people with Parkinson's have had reported symptoms of this condition. There have been lots and lots of studies. Putting them all together, we're at about 46%. This is associated with higher age and worse motor problems in Parkinson's, more memory issues, and more sleep problems. This goes along with some of the other markers of disease severity.

Now, why does this happen? As I said, it's pretty common in Parkinson's disease, and it can actually occur even before the first symptoms of Parkinson's, by on average eight years. This is something that is considered part of that process. For some people, it starts before Parkinson's disease. For some people, it starts on or after the diagnosis of Parkinson's. But there are some other causes too. Certain antidepressants can induce this. Sleep apnea can induce this, so there are some mimics for this that are completely unrelated to Parkinson's. There are some other disorders as well that do that.

In terms of how we make the diagnosis, that diagnosis typically requires doing a sleep study, where we can look for the signature of that and also look for other causes. But the first thing I always do, even before we get to that, is talk about safety, because the biggest concern here is risk of injury. I always recommend moving away from or padding bedside furniture. You can get these corner cushions to stick on the nightstand, so you're protecting the corner. If one falls out of the bed, they don't hit a sharp corner on the nightstand. Maybe padding the headboard or wall, removing things that could be injurious, including weapons.

Dr. Roneil Malkani 00:24:18
Some people do have bedside firearms or other weapons, and that can be pretty dangerous if one, in their sleep, grabs something and starts using it. Removing that can be very important as well.

Because of the risk of falls, using a bed rail or putting some soft carpet, a mat, or cushioning on the floor can help, or even lowering the mattress and box spring. Instead of having it on a frame, put it down so that there's less distance to fall.

For those who have bed partners, having a pillow barrier or sleeping in separate beds can be helpful to reduce the risk of injury to the bed partner.

Treatment for this, as I mentioned, is safety first, and I've got to repeat it here because I really cannot stress that enough. If there is concern for medications that are worsening the condition, then there has to be a discussion of whether or not that can be reduced. That is not feasible in all patients. If there is underlying sleep apnea, treating that can be helpful. Even if sleep apnea is not the underlying cause, treating the sleep apnea can help reduce some of the symptoms for some of these events. We often use medications. Most of these are prescription medications, but our first line actually tends to be melatonin.

I always start at three milligrams, and we can bump it up depending on how frequent these events are, to 12 milligrams as well. There are other treatments that we use when these fail or can't be used for other reasons, but these are the ones that are helpful to help suppress the acting out of the dreams.

Dr. Roneil Malkani 00:26:04
Now let's move on to insomnia, where I'm actually going to spend a lot more time. This is very, very common. As I mentioned, most people with Parkinson's have some degree of nocturnal disturbances, and about a third have more moderate to severe nighttime sleep problems. This is not just with falling asleep. It can also be staying asleep. It can be both, and this can lead to more problems with functioning during the day in terms of sleepiness and fatigue.

There are many reasons why sleep can be fragmented. It could be the Parkinson's symptoms in the middle of the night, more tremors, more slowness, difficulty turning in bed, getting comfortable, or difficulty getting to the bathroom because of the slowness. Some people also have dyskinesias, more extra movements that are occurring more at night. Going to the bathroom at night, nighttime urination or nocturia, is very common. It's because not just of the disruptions of sleep that are happening, but also changes in the control for the bladder at night, or even during the day. In men, it can be prostate issues. In women, there are other factors that can affect bladder control. So there are a lot of reasons why this can happen.

Mood issues also. Depression and anxiety are more common in people with Parkinson's, so these can be a factor. Medications that we use for Parkinson's disease or otherwise can affect our sleep. Sleep apnea: many people with sleep apnea may have difficulty with sleepiness during the day, but it can cause disruptions in sleep at night. Treating that can help improve sleep continuity as well. Restless legs syndrome we've talked about. Circadian rhythm problems can contribute to this as well. These are all different problems that factor here, but you know what? Some people can just have insomnia, and it's not due to these things. That's actually common with aging as well, so it can be its own problem as well.

When it comes to the nighttime Parkinson's symptoms, this can be, as I mentioned, nocturnal off time where the medications have worn off and now there's more stiffness and difficulty turning in bed, or it can be more on, so there are more dyskinesias. For this, medication adjustment can help. Maybe it's adjusting the nighttime dosing, long-acting dosing, or doing something in the middle of the night. There's a lot that we can do to address the effects of Parkinson's medications here, to help with this. Usually this is something that is easier to address.

Nighttime urination is very, very common in Parkinson's, and there are medications we use for that. There are certain medications specifically for the bladder. For some people, they get botulinum toxin injections to help improve bladder control and reduce this. But first line is watching the fluids at night. If one is taking water pills, then see if that can be adjusted in terms of the timing or the dosing, if we think that's a factor there as well. Other things I didn't mention are caffeine and alcohol intake. Those things can also affect not just sleep, but also urine production at night. One thing that I've not covered here in this talk generally is sleep apnea, but sleep apnea can also increase urine production at night and is another factor here as well. If one has sleep apnea, treating that can help reduce the bathroom trips in the night.

Dr. Roneil Malkani 00:29:46
Let's talk about insomnia in a little bit more general terms here, okay? When we think about insomnia, we think about it as a model of three Ps.

There's the predisposing factor, which is maybe being a light sleeper, family history of insomnia, maybe history of depression or anxiety, or other things that raise our risk of developing insomnia, but not insomnia at that point. The second piece is the precipitating factor. Now we've hit a threshold for developing insomnia.

When one has a stressor, maybe it's one big thing: a change in job, change in maybe somebody in the family got ill, oneself got ill, relationship status, or any sort of stressor. Sometimes it's not one thing. Sometimes it's a lot of little things all coming together, but the stress has induced the insomnia. Usually people will say, "Okay, yeah, I know why I'm not sleeping well. I've got all this stress." But over time, that gets better, and that gets less and less.

But what happens is the third P takes over. These are the perpetuating factors. These are the conditioned responses and maladaptive behaviors that keep the problem going. What happens here is that people will be in the bed. They'll try and sleep. "I need to sleep. Why can't I sleep?" There are a lot of racing thoughts, maybe about the stress, maybe about other things, maybe about not sleeping, oftentimes about not sleeping. Frustrations: "I need to sleep. Come on, I need to sleep." The more you chase after sleep, the faster it can run away.

What's happened here is that there's this maladaptive attitude and behavior that keeps the sleep from coming back. These are those perpetuating factors.

Another thing I want to touch on about this is that mood aspect. Depression and anxiety have definite impacts on sleep. People who have a depressed mood also tend to have less sleep, more insomnia severity, and we also see fatigue and sometimes sleepiness during the day in the setting of depression. But when we think about this, there are two aspects. There's mood, and there's insomnia, but this is not just one way, where the mood causes insomnia problems. It's also the other way. This is bidirectional. Insomnia, difficulty sleeping, worsens the mood and feeds into this problem. We need to take this and unravel this. Oftentimes, we'll end up addressing both the insomnia and the mood at the same time.

Dr. Roneil Malkani 00:32:23
How do we make the diagnosis of insomnia? First thing is we've got to take a careful history here. We need to find out the pattern. What are the problems? Is it falling asleep, staying asleep? When did this happen? What are the perpetuating factors in that one person that seem to keep it going? What's been tried before, whether it is medication treatments or non-medication treatments? What are the strategies that have been employed? What are the things that one is doing before sleep? How much physical activity? How much light exposure?

You're looking at the medications. We're also looking at what's happening in the sleep environment. Is it a cool, dark room? Are there noises? Pets in the bed actually can be disruptive to sleep in some people. What about the sleep schedule? Bedtime, wake time, middle-of-the-night awakenings. Does this vary from day to day, from weekdays to weekends or workdays and non-working days? We're looking at where it is on average, but also a lot of the variability there. What symptoms are there at night from the Parkinson's, or pain, or restless legs, and acting out dreams and all this stuff?

When we get all the careful information here, we also can use surveys to help quantify maybe issues with sleepiness or sleep quality. Then we do something called sleep logs or sleep diaries. This is an example of a sleep diary. This is where we have somebody mark the day of the week, if they're working or not, when they get into bed, that's that down arrow, and when they get up out of bed, that's the up arrow. C is caffeine. This person's got coffee every morning. Then we're looking at the sleep timing.

The shaded areas relative to the time listed above are when this person is sleeping. You can see that how long it takes to fall asleep can be less than an hour, it could be an hour and a half, it could be more or less. A lot of variability there. There's usually two, maybe three awakenings, varying how much that is lasting for and when that happens. There's a lot of variability here, but the sleep is interrupted, occurring in multiple bouts through the night because of these interruptions. This is an example. There can be a lot more variability, maybe less variability. With the diary, we can also look at naps during the day and see how that might be impacting. We can also tag on more specific things here depending on the history and what we're looking for.

Dr. Roneil Malkani 00:35:15
How do we improve the sleep? There are many different strategies, things that are maybe employed during the day, things that are employed at night. In terms of daytime, a lot of this happens to focus on improving wakefulness during the day and also getting exercise and light exposure during the day. Moderating or limiting alcohol intake, caffeine if used only in the morning or earlier in the day so it doesn't interfere with sleep, and limiting naps. For the nighttime, it's having bedtime routines.

Addressing other sleep disorders. Addressing environmental issues like proper temperature, light pollution into the room, sound interruptions, and things like that.

Sometimes we use behavioral strategies to address these racing thoughts and negative emotions, things like cognitive behavioral therapy. I'll detail that in a moment. There have been some newer treatments that are emerging now for brain stimulation. For example, there's electrical stimulation. There's a new device that has come out on the market for this, and there has been more research going into things like sound stimulation to improve sleep depth. REM sleep stimulation is still really under investigation, but it will hopefully become something that becomes a reality and something that people can use.

Let me talk about cognitive behavioral therapy because this is considered by many to be first-line treatment for insomnia. I mentioned there are a lot of other factors that can go into disrupting sleep in Parkinson's disease, and those need to be addressed. But if those are addressed or those are not considered to be the factor here, then we're dealing with insomnia as its own problem. Then we can talk about treatments like cognitive behavioral therapy. This is, as I said, first-line treatment because it's non-medication. It helps get to the underlying cause and unravel that underlying problem of insomnia.

What happens here is that there's this vicious cycle of negative thoughts and negative emotions that lead to negative behaviors, and these lead to worsening of the problem and more negative thoughts, and so on.

Cognitive behavioral therapy uses a variety of techniques that address these negative thoughts and negative behaviors to help break this vicious cycle, okay?

Dr. Roneil Malkani 00:37:55
This really gets to the underlying root. This has been studied in many clinical trials across various populations, younger patients, older patients, Parkinson's disease, non-Parkinson's disease, lots and lots of different studies. That's why this is considered standard of care, and it works as well as any pill, and the effects can last longer. Sometimes we do combine it with medications.

This is something that is very much like physical therapy for Parkinson's disease, where there will be a number of sessions either every week or every other week. You'll report in how things are going, and you'll get some new strategies or adjust the strategies. You'll get homework. You have to practice this, and then after four to eight sessions, plus or minus a few, things should be better. There are different techniques that are used for this, so it's individualized to each person.

Some of these techniques, like doing a new exercise program or physical therapy, sometimes things get a little bit harder, and you feel a little bit worse before they get better. Sometimes it takes a little bit of stress on the system to induce healing. This can be given individually, one-on-one. It can be done in groups. It can be done in person. It can be done virtually online, like through a video meeting. There are also some programs that are digital, so there is no specific coach, and you're doing this on your own with an online program. There are many ways this can be provided. There are many books that talk about this as well.

There are a lot of different options out there for books for people to read to help improve their sleep. As I mentioned, there are lots of different techniques. I'll go over just a handful here.

There is sleep hygiene, stimulus control, relaxation training, and sleep restriction or compression therapy. This is really also a guided line. There are others, but there really just isn't enough time to go over them.

Sleep hygiene: this is, you know, many people who've already tried to address their sleep have already tried some of these things. This is always covered in the first visits for a cognitive behavioral therapy program because these are sort of the bare bones, but these are not the mainstay techniques.

Dr. Roneil Malkani 00:40:17
But I'm still going over them here. Keeping a regular schedule, regular bedtime, regular wake time. If there's a lot of variability, then the brain doesn't know how to predict, and it's not conducive to having regular sleep.

Have a bedtime routine. This includes having some wind-down time. Have something you do every time. It's kind of like a little ritual, getting ready for bed.

You want to avoid caffeine in the evening, avoid alcohol or heavy meals near bedtime. Alcohol, yes, it can help people fall asleep, but it can be very disruptive to sleep, cause more awakenings in the middle of the night and having to pee more at night. This can actually be very disruptive. Heavy meals can cause some more reflux-type symptoms, some issues, and that can also disrupt sleep further. You also want to avoid bright lights and screens close to bedtime.

This has been a big issue with screens close to bedtime. The issue is that part of it's engaging, especially if you're doing something on the phone or the tablet and you want to be involved, so you start thinking about that more. But also the lighting is very activating to the brain. On top of just being a light source, these screens are blue-enriched lighting, and blue light in particular is very activating to the brain. You want to cut off the screens at least 30 minutes before bedtime.

Instead, I recommend reading with a lamp and an actual physical book, because that's not as much light reflected off the book versus using the screen. But if one needs to use the phone or tablet, listening to audiobooks or podcasts can provide some of that distraction without getting the light.

If one takes naps, try to limit it to not more than 30 minutes in the day and keep that on the earlier side, early afternoon rather than later in the afternoon, because that will interfere with sleep more.

Exercise, exercise. I cannot stress that enough. Exercise is so good for sleep.

One of the techniques I mentioned is stimulus control. This means that if you're in the bed and you cannot fall asleep, and it's been 30 minutes or more, get out of the bed. What happens is we're in the bed, we're sleeping, we're trying to sleep, we're trying to force sleep. Why can't we sleep? The thoughts then run amok. But if we're not going to sleep anyway, why stay in the bed and torture ourselves?

Get out of the bed and go do something kind of relaxing. It's still kind of rest time. Watch a little TV, something that you could turn off, nothing too engaging. Read something. When you're tired, get back into the bed and give yourself another 30 minutes to fall asleep. For some people, this really works to say, okay, you know what, I take the worry off, and they're not going to sleep, but part of the thing is also just to not perpetuate the negative racing thoughts.

Dr. Roneil Malkani 00:43:07
Relaxation training: there are lots of different things like this. There's progressive muscle relaxation. There's also what we call autogenic training, where you're focusing on specific body parts one at a time. There's biofeedback to try and create this internal sensation of, okay, this is what my heart rate's doing. This is what I'm thinking.

How do I calm myself down? How do I adjust my breathing to affect my heart rate and how I feel? There are guided imagery techniques as well to help induce relaxation. The relaxation can help reduce some of the negative thoughts and racing thoughts. Even before bed, this can help prime the system for relaxation and rest.

Sleep restriction/compression therapy: this is something that's often individualized, but the whole idea behind this is that the brain has a sleep drive. The more we're awake, the greater our need for sleep. Then we go to sleep, and that drive comes down. What we're doing here by limiting how much time we're in bed is that we might actually get a little less sleep, but that revs up the brain's drive for sleep. Maybe instead of getting six hours of sleep, now you're getting five and a half. The brain's maybe still not sleeping well, but functioning on six hours. But now five and a half, that's really not enough.

The brain's drive for sleep starts to get a kickstart. It starts working well again. You get a little less sleep at first, but eventually you start sleeping more and more of that time in bed. Once that happens, then we gradually lengthen the time in bed, as long as one is sleeping most of that time. It's work, but this really works well.

Dr. Roneil Malkani 00:45:03
Now, when these techniques are not feasible or they don't work, or we really want to try medications, there are a lot of medications that have been used, both approved medications and off-label medications. These are the ones that are often used, and it's a big soup of stuff. But I always try to split this off into thinking about those that promote sleep, those that inhibit wakefulness, because it's a balance between sleep and wake, and then things like melatonin-type medications and so on.

The ones that are approved for use are things like zolpidem, eszopiclone, zaleplon, doxepin and the orexin antagonists. The choice of medication does depend a lot on what's going on with an individual person in terms of what type of sleep issues, other medical issues, mental health issues and what other medications they're on. This is something that's very individualized here.

Those are the general medications. There have been some medications studied specifically in Parkinson's disease, and I've highlighted that here. From the insomnia angle, the ones that really pop out: melatonin can improve sleep quality a little bit. Sodium oxybate has been shown to be helpful, but this is not typically used in Parkinson's disease.

Bright light therapy and cognitive behavioral therapy definitely improve insomnia symptoms. There is some data on bright light therapy improving sleepiness during the day and also potentially improving insomnia. Low-dose doxepin has been studied. This is usually one of my go-to medications when we do this. This can be helpful. Eszopiclone, which is another sleep-promoting medication, can be helpful. The others have been studied more so for sleepiness during the day, but safinamide, in one small study, showed improvement in sleep quality as well. So there have been some studies in Parkinson's disease as well, and some things that we know may be a bit safer in people with Parkinson's.

Dr. Roneil Malkani 00:47:16
I want to take a moment about bright light because this is also another non-medication strategy that can be helpful. There was a study showing that bright light therapy can improve daytime sleepiness in Parkinson's disease. Recently, there was a study that was just completed, but has not been published yet, on bright light therapy for insomnia in Parkinson's disease. There's no one right protocol for this. It really depends on the individual.

If their clock is more delayed, whether they're more of a night owl versus a morning person, or a morning lark kind of a person, depending on the scenario, that is how we would time it. But there are different options that we use for bright lights. There are small devices that can sit on the table by the computer. There are wearable ones that are often used. But I'm a big, big promoter of natural light. Sunlight is better than any light box. You don't have to be directly in it. It doesn't have to be a very bright day. Even a cloudy day is very, very bright. So getting some natural light is actually very good for the brain.

For those who are in nursing homes, there have been some studies even using light tables so that people are maybe looking down a little bit more, but they're still able to get that light, and that can help improve sleep.

Ultimately though, when we're dealing with insomnia and sleep disruption, and even daytime sleepiness, I always think about doing what we call a multimodal approach, meaning lots of different things all at once: bright light, exercise and physical activity, social activity, going out for a walk and talking. It helps stimulate the brain. Even things like yoga, which train the brain in different ways, can be helpful for sleep.

We've talked about a lot of stuff, but there are some things you can try at home. When should I get help? That's always a big question here. So, when to see a sleep doctor? I said sleep because these can be higher-level things. While some strategies may be helpful if you work with a primary doc or your neurologist, sometimes, if that fails, then it's worthwhile to see the sleep doctor. If you've tried some strategies and you're not getting improvement in insomnia, or you want to try a sleeping medication or try cognitive behavioral therapy, that's a good reason to see the sleep doctor. There are other problems: snoring, sleep apnea, restless legs syndrome, doing things in their sleep, acting out dreams. These are good reasons to see the sleep doctor.

Dr. Roneil Malkani 00:49:51
If you go to see the doc, what do you expect? Well, you're going to get a lot of questions. As mentioned before, we ask lots of questions. I have to get to know your pattern and what's going on with you. We talked a lot about each individual problem today of the problems we covered, but oftentimes there are multiple things at once. There's maybe some insomnia and also restless legs, or insomnia and acting out dreams, or maybe some sleep apnea. So there are often multiple things all at once. It takes a lot of probing to try and understand what's happening.

We may be asking patients to do sleep diaries to get a sense of a pattern, maybe do a sleep study if we're worried about REM sleep behavior disorder or sleep apnea. There may be blood tests involved, typically if we're looking for iron levels in people with restless legs syndrome.

Then we talk about all the different options, the behavioral strategies. We may have to talk about a decision tree where we say, "Okay, we're going to try this. If this doesn't work, then we'll try that, and then we'll try that," and go one thing at a time, sort of a stepwise approach.

We may provide a referral for cognitive behavioral therapy or some online resources, but again, how we approach all of these problems is very individualized.

This is the Northwestern Medical Sleep Center. This is actually a little older picture. Our group is way bigger now at Northwestern, and we have clinics in different areas in the Chicagoland area. I also see patients through the VA hospital, although I didn't show that.

A few quick takeaways: sleep problems are very common. There are many different kinds. If you act out your dreams, please work on getting your sleep environment safe because that's something you can do even before you get to a specialist on this. If you have the problems, get some help. We're here for you. We can make things better.

There are a couple of different places that you can go to get some more information. Project Sleep has a lot of information for people about sleep. Also, the American Academy of Sleep Medicine has a lot of information for the public to help with this. There are other places to go that are run by research cohorts that can also provide information as well.

I'll end with a proverb: A good laugh and a long sleep are the two best cures for everything.

Dr. James Beck 00:52:50
Thank you very much, Dr. Malkani. That was an incredibly thorough presentation. I'm looking at some of the questions coming in and seeing you address them as you go through. So that's really fantastic. That's wonderful to see as part of the process. Before we get going with the questions, I just want to remind those who are listening, feel free to keep continuing to put them in the Q&A, and if you're on Facebook, put them in the comment section, and we'll do our best to get to them, addressing those, of course, which are on topic here. For those we won't be able to get to because we do have a limited amount of time, my colleagues at the Helpline will do their best to help, and we have a number of materials online as part of this process.

Thank you again, Dr. Malkani. One of the questions that came in is about one of your last slides, where you mentioned trying to find sleep specialists. Is it important to find one who really knows something about Parkinson's disease? Because you may be that rare bird, a movement disorder specialist as well as a sleep disorder specialist. Is it enough to just work with any sleep specialist per se? Or is there anything unique or challenging about Parkinson's that our listeners should be aware of and let their clinicians know if they end up seeing a sleep specialist?

Dr. Roneil Malkani 00:54:06
Yeah, I think it's quite variable out there in the sleep community. There are some sleep providers that are more pulmonary-based and maybe more comfortable with things like sleep apnea, but I know many pulmonologists who do the whole gamut of sleep problems as well. It's like finding any other doctor. There are some who really know the latest and what to do, and there are some who are not as comfortable because their niche is a little smaller. I think seeing a neurologist is helpful. A neurology sleep provider may be helpful because they may be more familiar.

But I know many pulmonologists who have been trained and know these things very well. There are many programs that take people from all sorts of specialties and train them in a diverse program where they may not be a neurologist, but they have seen this many times. They know what to do.

So I think it's more so researching the individual provider rather than putting people in categories here.

Dr. James Beck 00:55:19
Understood. Some other questions come in too. You mentioned that one of the very first things you do with your patients, it sounds like, is evaluate their iron levels as part of your workup. One of our listeners writes in that she had thought that iron might interfere with carbidopa/levodopa. If that's accurate, how does one balance that with this? Because it seems people with Parkinson's have got a lot of medications that they're taking. In addition to worrying about whether iron supplementation may be an issue, how do you deal with their panoply of medications they're taking and trying to figure out what might be at the heart of their problem?

Dr. Roneil Malkani 00:56:05
That is absolutely a great point here. I'm not aware how much iron and carbidopa/levodopa interact with each other and limit absorption. You hear about that more so with other minerals. But also, one thing about iron is that tannins in coffee and tea can also reduce absorption. So a lot of times, we're playing with the timing of it. If there is an issue with that interaction, or if one has noticed that, then maybe timing the iron so that it is between doses and not taking it with the dose.

Although a lot of times people take it with food, iron does not have to be taken with food as long as it's not causing an upset stomach. So the timing of it can be adjusted.

Dr. James Beck 00:56:56
It's interesting too, again, one of the issues you raised is for people who have insomnia or other issues with the sleep interruptions, the fragmentation, for getting up to use the restroom. Again, there's this fine line between cutting back on liquids, but then also, and iron can be a contributor to this too, battling constipation.

Then you mentioned the water pills, right? For people with hypertension, maybe taking that. It really seems like you're trying to navigate a thicket of problems, so it's just really trying to reach a best solution. Is that accurate?

Dr. Roneil Malkani 00:57:38
That's absolutely accurate. Every person I see in my clinic is so different from each other because there's a different set of problems, different set of medications, and a lot of variability in how everyone has responded and what they need. Each person has to be handled on an individualized level in terms of understanding what's going on and how to manage that thicket.

Dr. James Beck 00:58:03
It seems like you had a nice presentation about sleep hygiene, which seems like very straightforward things someone could do at home. But it's really clear that to really tackle this, you need to bring on an expert to deal with not only the medications, but also these other issues. I know we're cognizant of time. Just a couple more questions, if I can. This is something you hear: don't wake the sleeping person, whether they may be sleepwalking. What about with RBD? How do you respond to care partners who may see their partner having one of these violent dreams, or they're sleepwalking? What's the suggestion to keep them safe, as well their loved ones safe, as well as themselves safe?

Dr. Roneil Malkani 00:58:49
That's a great point. Different types of doing things in their sleep, I have different responses. Somebody who is a sleepwalker, while they're walking, you really don't want to try and wake them up because that can actually trigger more aggressive behaviors that's not under their control. They're asleep still. But that's very different than REM sleep behavior disorder, where people tend to wake up pretty easily out of it. But still, you need to be careful because if it's very aggressive behaviors, punching and so on, you don't want to get hit. You can do some nudging. You can do some calling out.

Usually, when people are acting out the dreams, they can wake up more easily out of it, and that's not so dangerous. It's not going to be like a violent response like you see in somebody who's sleepwalking. But as I said, when you're seeing this as a bed partner, you want to make sure that you've got some protection, some pillows between the person and the bed partner, just to help reduce risk of injury.

Dr. James Beck 00:59:51
Yeah, for sure. Maybe this is a situation where you get out of bed and turn on the room light, and maybe that would be sufficient to wake them up. So you're distanced, but also provide that cue.

Dr. Roneil Malkani 01:00:00
The light itself may not be, because the eyes are closed. The person may not be aware, but one can try. Absolutely. Sometimes it's more that voice or a nudge that will wake them up.

Dr. James Beck 01:00:14
Dr. Malkani, thank you very much for your time. I'm afraid we've run out of time for questions. I know that more have come in, and my colleagues can help. As I mentioned, we do have a number of great materials online that can augment Dr. Malkani's presentation as part of that. Thank you again, everyone, for that.

Thank you, Dr. Malkani, for your time today, sharing with us your expertise. I'd like to just highlight where we are in our expert briefing series. We're finished with number three, and coming up is number six in September. We're going to have a little bit of a hiatus coming up for the summer months, and we'll restart again to close out our series of expert briefings in the fall with our Medications 101 as part of the process. So look forward to that and hear what we have on tap for that.

We also have our PD Health @ Home. This is our ongoing series, weekly virtual programs that are fantastically produced and put together. Really, they're a wonderful series for everyone. Take a look at that QR code if you're not watching on your iPhone, if you're on a computer or iPad. Hold it up there for the QR code, or you can even go to our website and register much like you did for our expert briefings here as part of that process.

The presentation here will come to an end, but we're here for you still. We have our Helpline: Parkinson.org/Helpline, Helpline@Parkinson.org or even through the call-in line, 1-800-4PD-INFO. We have a really talented group of support specialists, support staff who are very knowledgeable about Parkinson's disease. I often frequently ask them about specific questions, and they're incredibly responsive and are there for you as part of the process.

Before we go, like all Zoom meetings, it's going to go to black, but we still want you to stay engaged with us. We want your feedback to understand your thoughts of this presentation and other questions that might come up there to see what we can do to make our expert briefings better. These are something that we really rely on with every expert briefing to continually improve upon it, and it's part of our dedication to really being responsive to you, our Parkinson's community, as part of the process. Thank you very much. Take care, and we'll see you in September with our next expert briefing. Thank you.