Dr. James Beck 00:00:01
Hello everyone, and welcome to our Expert Briefings. I'm Dr. James Beck, Chief Scientific Officer of the Parkinson's Foundation. Our Expert Briefing today will focus on sleep challenges in Parkinson's disease. As you know, a good night's sleep is critical to our health and well-being. For people with Parkinson's, sleep is even more important, as the brain and body need more time to restore. Today, we'll learn about the common sleep challenges associated with Parkinson's disease and how those challenges can affect sleep. Importantly, we'll explore ways to get a better night's sleep while living with Parkinson's disease. But before we begin our formal briefing, let me share a little bit about the Parkinson's Foundation.
The Parkinson's Foundation is a nonprofit focused on bettering the lives of those living with Parkinson's through improving care and advancing research. Everything we do is done in close concert with our community to ensure that our actions are aligned with the needs and priorities of those living with Parkinson's disease. Today's program is one example of how we are meeting our goals. Today's program is actually part of a broader program called PD Health @ Home. The Parkinson's Foundation provides these weekly education and wellness programs virtually through the PD Health @ Home series, including Mindfulness Mondays, Wellness Wednesdays and Fitness Fridays.
As part of this series, we also have our Spanish-language programming, EP Salud en Casa, which I hope I pronounced okay. Find out more and register for our PD Health @ Home programs by visiting the webpage on the screen when you have a chance. What I'd like to do now is get a chance to know who's listening today. It's always great to get a sense of who's joining us on the call. We're going to launch a poll. If you're joining us on Facebook Live, please respond using our comment section so we can get a sense of who's listening today.
Fill in whether you're a person with Parkinson's, a spouse or a partner. Does a parent of yours have Parkinson's? Are you a healthcare professional? Perhaps you're joining us from a different perspective. Let us know by responding in this poll that we've just launched, and then we'll see where we are. We can use this information shared with our speaker today to help provide some slight modifications to our talk.
All right, excellent. Not surprisingly, most of the people joining us today are people with Parkinson's and their care partners. This is fantastic. We've got a lot in store for you today.
Dr. James Beck 00:02:21
Just to let you know, if we have a lot going on and you're distracted, or if you want to share it with some other folks, we're recording our Expert Briefing, like we do all of our Expert Briefings, and it will be available online as part of our library. If you've registered, we'll email you a link to the recording, as well as other resources related to today's topic.
Let's get on and meet our presenter today. I'd like to introduce you to Dr. Aleks Videnovic. He's an associate professor of neurology at Harvard Medical School, chief of the Division of Sleep Medicine at Massachusetts General Hospital and director of the Massachusetts General Hospital Program on Sleep, Circadian Biology and Neurodegeneration.
Dr. Videnovic is also president of the International REM Sleep Behavior Disorder Study Group and co-principal investigator for the Network for Excellence in Neuroscience Clinical Trials, supported by the NIH. He also serves on the executive steering committees of the Parkinson's Progression Markers Initiative and the Parkinson Study Group.
Dr. Videnovic, welcome, and thank you for sharing your time with us today.
Dr. Aleks Videnovic 00:03:27
Thank you very much, Dr. Beck, for this kind introduction, and hello, everyone. It is my great pleasure to present today on challenges that our patients, and sometimes their spouses and bed partners, have with their sleep throughout their journey with Parkinson's disease. I am especially pleased to be part of this great Expert Briefing series that the Parkinson's Foundation has put together.
The Foundation has done a phenomenal job, in my opinion as a physician and a scientist, in meeting the needs of the Parkinson's disease patient community. This is what we do. This is why we exist and go to work every day and do research. I'm really very much appreciative of being part of this effort to try to lessen the burden of this disease that we all need to live with on a daily basis. Thank you so much for joining today.
To learn more about sleep and Parkinson's, I will go ahead and share my slide, and we'll be on the way with my presentation.
Terrific. I really do not have a lot of disclosures here. I have a lot of research support from the National Institutes of Health, but this is the only disclosure, where I served on the data safety monitoring committee for a clinical trial in Wilson's disease. It really does not have anything to do with the presentation that I will do today.
These are going to be our learning objectives. I would like to present the most common sleep challenges that patients with Parkinson's disease experience. I would like to discuss how we can diagnose and treat these disorders. Another objective will certainly be to meet your needs through the Q&A session for some areas that you may find relevant that are not covered in my talk.
I would like to start by saying that even in the original description of a group of patients who Dr. James Parkinson described in 1817, it was evident that his astute clinical observations commented on problems with sleep that these patients had experienced. This disease that he initially called shaking palsy, and this is the initial description in the Essay on the Shaking Palsy, later became known as Parkinson's disease when the famous French neurologist Charcot coined the name of this disease after this observer who reported it initially.
Dr. Aleks Videnovic 00:06:47
However, it is important to emphasize that it hasn't been until over the past maybe 20 years that sleep disturbances have been recognized as one of the leading symptoms that affects quality of life in patients with Parkinson's disease. That's why we are having this presentation today.
We know that Parkinson's disease, in the majority, is a disorder of aging. Aging represents the single most important risk factor for the development of Parkinson's disease. As we age, our sleep changes as well. Here are some changes that we can expect. All of us who are normally aging and becoming older year after year will invariably experience some changes in our sleep. Sleep is going to become less efficient. We may develop more arousals as the night goes by.
Certainly, a lot of patients may feel that one nap during the daytime may be beneficial for their functioning as they get older and older. The problem becomes even more challenging if one develops neurodegeneration, in this particular case, if one develops Parkinson's disease, because that process of neurodegeneration, which is in the middle of this graph here, affects these areas that we call the circadian system and homeostatic drive.
These are fancy scientific terms for components that are necessary for normal regulation between sleep and alertness. Now, on top of aging, Parkinson's disease-related changes in the brain further affect these sleep regulatory areas and therefore negatively affect this fine balance between alertness and sleep that certainly follows the rotation of our planet.
Then the picture gets even more complicated, because it is not only that these intrinsic changes occurring within the brain affect sleep and alertness, but there are many other elements embedded in Parkinson's disease that further affect our sleep. For example, certain medications that patients with Parkinson's disease take affect sleep and/or alertness. Motor symptoms, or neuropsychiatric symptoms like the emergence of hallucinations or mood and anxiety problems, especially overnight, can emerge when one wakes up and can complicate sleep and alertness further.
Dr. Aleks Videnovic 00:09:36
On top of that, we cannot forget about the presence of primary sleep disorders, such as sleep apnea or restless legs syndrome. I'm sure you all have heard about these disorders, and these conditions, on top of all these other factors, can contribute to poor sleep and alertness. In summary, this slide is to illustrate how complex the causes are that may lead to disturbed sleep in a patient with Parkinson's disease.
When we think about sleep in Parkinson's disease, I like to think in two broad categories. One is problems with overnight sleep, of course, when we go and try to sleep, and many, many problems can happen during the night. Secondly, we cannot forget about excessive daytime sleepiness. Inability to stay awake and alert during the daytime can have substantial implications for quality of life, safety and cognitive functioning. Therefore, we always need to think: How is it that I, as a patient with Parkinson's disease, function during the daytime as well?
Between these two categories, it is safe to say that almost every patient with Parkinson's disease will experience some type of problem, to a various degree, with their sleep and alertness throughout the course, throughout the journey of their disease.
Dr. Aleks Videnovic 00:11:03
We will start with these nocturnal sleep problems and nocturnal sleep disturbances in Parkinson's disease. Patients may have the emergence of their symptoms of Parkinson's overnight, which certainly can cause problems with sleep. Patients may have a primary sleep disorder, such as sleep apnea, a prototype disorder of a larger group of conditions we call sleep-disordered breathing. I'm sure you've heard about REM sleep behavior disorder and restless legs syndrome. We will touch upon these overnight problems as well.
Then there are many other causes that can lead to sleep disturbances in Parkinson's disease: mood symptoms, autonomic dysfunction, which can manifest as a need to get up to urinate and empty the bladder, pain as an underappreciated symptom in Parkinson's disease, which can emerge overnight, and several other elements that we will talk about during this talk.
Let's talk now about the most common sleep disturbance in patients with Parkinson's disease. That is sleep fragmentation, or fragmented sleep. By far, it is the most common problem that patients with Parkinson's disease report to us when it comes to sleep. Usually, when I speak with my patients with Parkinson's, they will say, “Doc, I have no problem. I fall asleep without difficulties, and then I wake up at midnight, at 2:00 a.m. and 3:00 a.m. Sometimes I'm up at 3:00 a.m. and cannot go back to sleep.”
This is very disturbing to our patients, and causes can really be multifactorial. Causes can be rather numerous. Here, the first couple of symptoms listed are symptoms well known to you. Usually, tremor will disappear as we fall asleep, but in the lighter stages of sleep, or certainly when we wake up in the middle of the night, tremor can easily re-emerge. Similarly, if someone has difficulty moving due to slowness or prominent rigidity, that may affect their ability to turn in bed overnight or to get up to urinate.
Sometimes patients experience this autonomic dysfunction, the need to use the bathroom overnight frequently or on numerous occasions. Sometimes there are primary problems that can be undiagnosed for a long time, like sleep apnea or some other sleep disorders. As you think about your sleep, I'd like you to ask yourself a question: Is my sleep consolidated at night? Am I one of these people who have fragmented sleep? Here is a nice illustration of what I mean when I say fragmented sleep.
Dr. Aleks Videnovic 00:13:52
These two graphs represent 24-hour periods for seven days in a row of two patients with Parkinson's disease who were wearing this wrist-worn device, Actiwatch, that records rest and activity as patients go around and do their daily functions. Here on the left side, you clearly see a lot of robust activity during the daytime, but then you can clearly identify, in the middle of this graph, an overnight period where you don't see these black lines. That means there is no activity. You can see that this person really has a solid, consolidated night, yes, with a few arousals maybe just to turn around in bed that this wrist-worn device can pick up.
However, if you look at this patient here, whose one week of activities is represented on this right graph, you can appreciate that, yes, there is nice activity during the daytime, but also it's not as robust as the activity for the patient on the left. There are periods of complete quiescence during the daytime. Then, when the nighttime comes, there are these clusters of awakening where clearly the patient is really disturbed or frequently even gets out of bed. Here, for example, on this line, there is prolonged, several-hour-long activity during the nighttime, which really should not be happening.
Dr. Aleks Videnovic 00:15:19
When we talk about what we can do about this problem of sleep fragmentation, I'd like to introduce the concept of sleep hygiene, which is really important. We frequently hear that terminology. Hygiene may not be the best term, but it is the most widely used terminology, and this is something that we should all embrace. When it comes to the efforts to improve the quality of our sleep, whether you have Parkinson's or you have some other ailments, or you are a completely healthy individual, these are some very important aspects that we like to encourage our patients to consider.
Don't do too much napping during the daytime because it is going to impact your ability to sleep at night. Save your exercises for earlier in the day.
Limit your screen time at least a couple of hours before bedtime to the best of your capabilities. I just had a patient who told me, “I wake up in the middle of the night.” He was a young person, and he said, “I retire to my bedroom around 9:00 p.m., and then my wife and I either read or do some computer work until 10:00 p.m., and then we turn the lights off.” Well, that's going to substantially affect that person's ability to consolidate sleep, because that light the person is getting into their eyes is giving a signal to a specific brain region and saying, “Well, it's not time to sleep yet.”
There is all this light. What's the difference from being exposed to bright light in the morning when the brain tells us it's time to get up? Please limit your screen time before bedtime. Obviously, caffeine and alcohol are really not good to be utilized in the evening hours. There is this last tip that I like to comment on: don't drink too much water if you really have a lot of problems with bladder control, because then you will for sure need to get up to urinate overnight.
These are some other approaches that one can take and consider for the management of sleep fragmentation. These slides are going to be available for you. I don't want to go into each of these elements of what can be done. Please review these. I would really stress the importance that medications need to be carefully reviewed by your care provider because, just by simply adjusting some of the medications, sleep fragmentation can substantially be improved.
There are these other comorbidities, especially psychiatric comorbidities, or identification or treatment of coexistent sleep disorders that need to be on the radar screen when one tries to manage this sleep fragmentation.
Dr. Aleks Videnovic 00:18:02
Let me now move to another condition. Again, I'm moving very quickly. I'd like to save time for Q&A, and again, these slides are going to be available for your review at a convenient time. REM sleep behavior disorder is another condition. It is a sleep disorder that belongs to a group of disorders known as parasomnias. In this condition, individuals really have very bad dreams with negative emotional content, frequently filled with fear or aggression.
They can act out their dreams, which means that if they are dreaming that they are being attacked by someone, they can start punching and kicking, trying to defend themselves as they are doing in their dreams. Then you can imagine a spouse who sleeps next to that person is really at risk of being injured. The patient is at risk of rolling out of bed and breaking bones or doing many bruises to various body parts. It is a very, very important disorder to know of, and increasingly becoming more and more important for the Parkinson's disease community every day. I will come to that in a second.
Dr. Aleks Videnovic 00:19:20
This is what we usually see. Maybe you all wonder, what happens when someone goes to the sleep lab? Well, we hook you up with many different wires, and then we let you sleep. On our monitors, we can see how your sleep is progressing throughout the nighttime. For example, this graph outlines 30 seconds of a patient who is sleeping in the sleep laboratory. I want to point out many of these vertical black lines that you are seeing here. This is really indicative for us that this patient is not quiet during their REM sleep like we all normally are.
When we enter REM sleep, we, as a matter of fact, become paralyzed and unable to move. However, in this condition, REM sleep behavior disorder, patients lose that paralysis as they enter their REM sleep, and then they can move. We can capture their muscle activity on these channels that we record from your muscles as you go through sleep. That's why sleep studies are really very valuable in establishing the diagnosis of REM sleep behavior disorder.
This disorder is also very important because we know that individuals who only have REM sleep behavior disorder are at a very significant increased risk for developing either Parkinson's disease or dementia with Lewy bodies. That risk is substantial. For example, here, if you look at this study at the bottom, the 12-year risk in this particular study is over 50% of patients. Newer studies really point to an even higher risk of developing Parkinson's disease or some other parkinsonian condition if one has REM sleep behavior disorder.
Why is that important? That is extremely important because now we understand that through this REM sleep behavior disorder, we have access to patients who are likely in the early stages of a neurodegenerative process that will eventually lead to development of either Parkinson's disease or dementia with Lewy bodies, for example. Why is that important? It is important because we now have a window of opportunity to intervene with potential therapies that can slow disease progression much earlier than we did in the past.
The hope is that if we intervene and implement these disease-modifying therapies in patients at early stages of neurodegeneration, we may be able to arrest that neurodegeneration in a more effective way, as opposed to waiting until someone goes through that sequence of several years, or even a decade or so, before they develop cardinal symptoms of Parkinson's disease and then trying to treat the disease. Therefore, this is why REM sleep behavior disorder is very important.
Dr. Aleks Videnovic 00:22:36
Certainly, many patients with Parkinson's disease also have REM sleep behavior disorder as a coexistent feature, and we estimate about 50% of Parkinson's disease patients may have REM sleep behavior disorder. In some of them, RBD may precede their Parkinson's; in some, that may not be the case. What do we need to do in terms of management of this condition? First of all, we all need to ask ourselves: I had that falling-out-of-bed episode two years ago. I didn't think much about it, but now my spouse is telling me that I start yelling every night.
These are symptoms that can really go unappreciated and undiagnosed for many years because who would think much of it if someone has one bad dream or a nightmare, until that becomes very, very prominent and then one starts asking this question? It is really important that we educate our patients that they need to implement protective measures in their sleeping environment.
They should have a lot of pillows next to where they are sleeping to prevent hitting their forehead around the sharp edges of their nightstand, or sleep in a wider bed to minimize the chance for injuries if one hits or flails. Lower platform beds are much better because the risk for injury from falling out of bed is going to be minimized. There are also medications that can be used to manage these symptoms, and clonazepam and melatonin happen to be the two leading medicines that we prescribe to our patients who have this disorder.
Moving on to another condition: restless legs syndrome. This is a very common sleep disorder in the general population. It is present also in patients with Parkinson's disease. We have patients telling us that every night when they sit down to watch TV, they develop this uncomfortable, unpleasant sensation in their legs. Some patients are going to tell us it's like water dripping on their legs. Some patients will say, “I just need to move my legs; they are jumping around.” Someone is going to say, “I feel some bugs are crawling, and this is urging me to get up and start walking around the living room, and that relieves this problem.
“But the moment I sit back again to watch that TV or go to bed to sleep, these symptoms are back.” This can be quite a disabling symptom. It is important not to misdiagnose it with other symptoms that we can see in patients with Parkinson's disease that are due to PD. For example, our patients will frequently complain of restlessness, that akathisia, if you have heard that term. Sometimes patients will have the emergence of rigidity as they sit down and watch TV for a longer time. All of these unpleasant symptoms may be confused for symptoms of restless legs syndrome.
These are some of the medication choices here. Again, the good news is that restless legs syndrome responds favorably to the very same medications that we use for management of Parkinson's disease, but there are some other options as well that can be considered in more pronounced and refractory cases of restless legs syndrome. Something for you to note: if you have these difficulties, please consult with your treating physician.
Dr. Aleks Videnovic 00:26:10
Now moving on to sleep apnea. We all have heard about sleep apnea. It belongs to a group of disorders that we call sleep-disordered breathing. What usually happens is that, as the patient falls asleep, these oropharyngeal tissues, including the tongue, really can fall back. If one has a really crowded oropharynx here, with large tonsils and a large uvula, these anatomical structures overnight can really present a barrier for a normal flow of air.
That way, there can be a temporary collapse of that airflow. One can start to lack oxygen, and eventually patients start waking up. They can wake up even 50 or 60 times an hour without even recognizing that they are awakening, because these can be microarousals that last only three or four seconds or even less.
Initially, we thought that sleep-disordered breathing and sleep apnea were more common in patients with Parkinson's disease. Newer investigations have proven otherwise. We believe that obstructive sleep apnea is present in patients with Parkinson's disease in the same frequency as it is in patients in the general population, but that still means that it's present in many patients because sleep apnea is a condition that exists in up to 10% of the general population.
If you have troubles with sleeping, if you're a snorer, if your spouse from time to time notices that you are holding your breath in the middle of the night, it is really time to consider sleep apnea as a possible explanation and treat it. There are many treatment choices for sleep apnea, depending on severity, but the gold standard treatment is to apply the CPAP, which stands for continuous positive airway pressure. One has a mask to put on the face, and then there is a machine on the nightstand that blows air under pressure. It is not oxygen; it's just simple air.
That air is blown under pressure to keep these areas in the back of your throat patent as you go through the night. EDS stands for excessive daytime sleepiness. Now we are turning to functioning during the daytime and the question of appropriate alertness.
There are many causes that can contribute to excessive daytime sleepiness, similar causes that can also be relevant for overnight difficulties with sleep. Some medications have soporific properties and can make us sleepy. If one has sleep apnea or other undiagnosed primary sleep disorders, due to poor nighttime sleep, one will certainly experience excessive daytime sleepiness. Certainly, these areas that are important for maintaining alertness may be affected by the primary brain changes that are occurring as a result of PD progression. That itself certainly may give rise to excessive daytime sleepiness in the PD community.
These slides were sort of misplaced here. I'm coming back. I knew I had this slide, but here it is. This is how the management of sleep apnea usually looks. There is this machine with tubing that blows the air, and then the airway is nicely open. But there are some other treatments as well, like a dental appliance and even some surgical managements. Weight loss can be very effective in management of sleep apnea, especially in mild cases.
Dr. Aleks Videnovic 00:30:23
Now coming back to excessive daytime sleepiness. This is really a common problem. This is one study that documented that up to 16% of all patients with Parkinson's disease may experience poor alertness during the daytime, in contrast to only 1% of the general population. In my experience, in my hands, this prevalence of excessive sleepiness in PD is even higher. The challenge, though, is that patients sometimes are really not aware that they are sleeping. That's why I always like to interview their loved ones, their family members who come with them, because they are the ones who really, in many cases, will bring up this issue of excessive daytime sleepiness.
If one is very sleepy during the daytime, we can do a lot of things, but if they are drivers at the same time and sleepy, that conversation usually becomes an unpleasant conversation because we really need to restrict the driving among these patients who experience excessive daytime sleepiness. Why is that? Because patients who are sleepy during the daytime can have these sleep attacks. Sleep attacks, or sudden onset sleep, can occur within a few seconds, even without any warning sign.
This is one of the studies done by our colleagues in Germany who surveyed over 5,000 individuals with Parkinson's disease who had a driver's license and were drivers at the moment of the study. Almost 10% of them experienced this sudden onset of sleep at the wheel, and half of them really had no warning signs that a sleep attack may happen or would happen soon. Therefore, we just really need to be super careful about sleepiness and sleepy driving.
I mentioned the significance of getting history from the spouse and caregiver. These are some other steps in the assessment of excessive daytime sleepiness among Parkinson's patients, and these are treatment options that one can try.
I can't stress enough how important it is to diagnose sleep disorders and treat them accordingly, adjust medication regimens to minimize their effect on daytime sleepiness, and then there is the possibility to use some medications that can promote alertness during the daytime. Some of these medicines are listed here. This is not an exhaustive list, but these are the most commonly used treatment choices.
Now I would like to turn to a relatively newer development when we talk about sleep disturbance in Parkinson's disease and neurodegeneration in general. This is the role that the circadian system plays in neurodegenerative disorders.
At the core of this system is our internal clock that is situated very deep into the brain. This is our internal timer, and this clock that sits in the brain regulates any physiological process in our body. How would this clock, which sits deep in the brain, know how to time us according to the daylight cycle that we operate under due to the rotation of the planet Earth? Because it receives time cues from the entire environment. The most important time cue is light, and it's bright light.
Dr. Aleks Videnovic 00:33:51
That light hits our eyes, and eyes are directly connected to this clock. Therefore, our clock is primed to know when it is time to get up and when it is time to go to bed. Physical activity, exercise, feeding schedules and feeding time can also be significant non-photic cues for the function of our timer.
If light is so important, and these non-photic zeitgebers are important for this SCN, for this suprachiasmatic nucleus — that's what it stands for, that's the fancy term for our internal timer — then that internal timer communicates with all of the body's other organs, and that translates to how well we do with our daily function. It controls our physiology, it controls our behavior, blood pressure regulation, insulin secretion and immune response. All of that fluctuates and has its own diurnal rhythm over a 24-hour period.
We have utilized this knowledge of the significance of light for regulating our biological rhythms and initially did the study of light therapy to try to ease sleep disturbance and daytime sleepiness in patients with Parkinson's disease. After only two weeks of treating patients with light therapy, we managed to improve their daytime alertness and nighttime sleep.
Then we carried forward and conducted this Enlight PD trial, which utilized the same type of therapy, light therapy, for a longer period of time. This trial has just recently been completed. We are ready to submit this publication across 25 sites in North America, and we are very, very excited to further work on the development and promise of light therapy, which you all know is a non-invasive, widely available, non-pharmacological therapy, which may benefit not only patients with Parkinson's disease and their sleep, but other symptoms of the disease, perhaps mood, anxiety, fatigue, etcetera.
If you live in the area where we are, or even in the region, we'd be very happy to talk to you about many sleep and Parkinson's disease research studies that we have at Mass General Hospital. Many other colleagues across the nation run these centers, but since I'm running the study, I thought I would welcome any of you who may want to learn more about it or get advice with whom to connect in your respective regions of the country or world. I know this is a worldwide audience. Please don't hesitate to reach out to us. We are a resource for you.
Dr. Aleks Videnovic 00:36:49
Finally, I think I'm doing good on time. I rushed a little bit. I am closing this with one of the same slides that I began with, with this cartoon or graph that really outlines how complex it is to diagnose and appropriately manage disturbed sleep in Parkinson's patients. I would like to encourage you and ask you to please spend 10 to 15 minutes thinking about your sleep. Talk to your loved ones, to your spouses, about your sleep.
Next time when you see one of my colleagues, just talk to them about your sleep if you think there is room for improvement. Almost all of us can work to improve the quality of our sleep. Certainly, that's the case for me. These are just some of the general concluding remarks. I already told you: think about your sleep, talk to your providers about your sleep, implement good sleep hygiene in any sleep environment, and think about, am I at risk, or do I maybe have symptoms of a primary sleep disorder that has been undiagnosed for a long time?
Then consider not only medications to manage your sleep, but consider these other changes in your thought process and behavior, and certainly consider these time cues from the environment, like exercise and regular meal timing. Finally, I have to advocate for light therapy, which certainly can be much better tolerated and easier to implement than taking medications to improve your sleep and alertness.
At the end of this talk, I'd really like to thank you all for joining today to learn more about what can go wrong with sleep and, more importantly, what you can do as the best advocate you are for yourself. I really appreciate the Foundation and the team for their technical support for the webinar, and also the Foundation certainly for having me talk about this important topic to all of you. Thank you.
Dr. James Beck 00:39:15
Thank you, Dr. Videnovic. I really appreciate your commentary on this issue. It's really important to realize how complex it is. I guess by way of saying that, there's probably no silver bullet with which to solve sleep issues, but it sounds like there are a bunch of little things that a person with Parkinson's can do to help address them.
One of the things we're hearing from the audience is, in particular, about supplements. There's a lot on the market people have access to that are over the counter. You even mentioned one of them, melatonin, which might help for people with RBD. What do you advise people about taking these supplements? I've heard conversations about magnesium, melatonin. What's your general recommendation for people with Parkinson's?
Dr. Aleks Videnovic 00:40:11
That's a frequent question that we get. First, I would say that one needs to understand that any of these supplements that are available over the counter are really not regulated like certain other medications, like Sinemet, for example. One needs to exercise caution with which supplements to use because, for some of them, we really don't even have a good understanding of what's in those supplements. Having said that, there are very safe supplements that we know can be quite helpful to manage someone's sleep. Melatonin, I think, is a prime example for that.
Melatonin, we know, is a sleep hormone. Especially if it's long-acting, it can be both effective for managing REM sleep behavior disorder and also fragmented sleep sometimes.
There are some other supplements that are available, these Tylenol PM and Benadryl, and these are just very frequently used by our patients, but I strongly discourage their use because of habit-forming properties that these medications have. Then there is a terrible rebound if one doesn't take that medication and misses it for a couple nights. It's going to be a miserable, totally miserable night.
Magnesium is safe. I think it's safe. We don't have really definitive studies to support the use of magnesium, but some patients swear by it. If you feel that magnesium is helping you, there is really no harm, I think, if it's taken in a reasonable amount, and I would really not suggest against it at all.
I think that we really also want to utilize the properties of regular nutrients. For example, nutrients that have a lot of proteins in them, especially those that have amino acids that are supporting certain neurotransmitters like serotonin, etcetera. Bananas and kiwis, for example, have a fantastic composition of nutrients and certain amino acids that are going to be relevant for synthesis of our neurotransmitters that promote sleep.
These would be the kind of supplements that I would be comfortable commenting on. There are many, many others, and in general, I do not recommend those to my patients.
Dr. James Beck 00:42:42
Likewise, and I'm curious to hear how you respond about this for your patients. Given the real interest in medical cannabis and those products, we as an organization have certainly put out a white paper and some guide to both people with Parkinson's as well as physicians. It's troublesome, especially for a person with Parkinson's, thinking about medical cannabis and its derivatives. What are your thoughts, especially around the realm of sleep?
Dr. Aleks Videnovic 00:43:17
Yes, and with the legalization of cannabis and so many products available, that's an excellent question. I am going to share my personal view and the way I practice this. I am just a little bit older school in anything that I do, so I kind of call myself almost like a dinosaur when it comes to these innovations of any type. I would say that marijuana is now legalized in many regions. It's widely available.
I think there are places that do this right, and the amounts and the quality of the products are probably fine. I would say that one needs to check their sources. I share the exact same thing with my patients. I tell them I do not routinely prescribe, I do not routinely advise its use. Many of them go and try it, and will have a couple of these gummies, and someone is going to have oil, etcetera. They will use it, and they will say, this helps greatly.
In my view, which is again very limited — this is not the view of the field. I just want you to understand I'm speaking here in a Foundation-sponsored event. This is Videnovic's view. I think marijuana, and those cannabis products, to be precise, can be helpful for pain. I think this is a really important indication. I feel that in certain types of anxiety, it can help calm patients and from that perspective may have some positive effects on sleep.
I do have a bunch of patients who really are trying this. I'm not stopping them from trying. All I ask is, do it really in moderation, pick a good reputable place, and let's monitor it. So I am happy to work with my patients who are using cannabis with all of those other precautions and disclosures I usually do.
Dr. James Beck 00:45:19
Absolutely. I think it's really clear that it is the Wild West out there, and people need to be very careful about it. The Parkinson's Foundation has some guidelines about that, and it's really clear, as Dr. Videnovic has emphasized, work with your physician about this. This is something to let them know that you're doing, as well as help them be aware of what's going on because there are medications you take that may or may not be compatible with that.
It's interesting because, Dr. Videnovic, you've done such really pivotal work looking at circadian rhythms in Parkinson's disease, and I've seen work you've published before and presented that they're really depressed, the levels, internal hormones that fluctuate. Questions about entrainment, in order to get those rhythms, as weak as they are, working properly for a person with Parkinson's: is it important for a person to go to bed at a certain time of night?
When we talk about that, it really relates to getting up. Is there a certain amount of time that you would recommend for doing it? Because some of us are night owls, some of us are not, and so the bedtime itself may not be important as it is the consistency of it. What are your thoughts on that?
Dr. Aleks Videnovic 00:46:33
Thank you so much for that question. I think making our daily lives regular and having routines in our lives are highly beneficial for overall functioning and maybe even more beneficial for individuals with neurodegenerative disease.
Going to bed at the same time, getting up at the same time, having a structured routine during the daytime, eating meals at the same time — all of these have not been really ... we are just scratching the surface with our research. But these are gifts of nature that we have and can implement in our lives relatively easily. We just need goodwill and to be disciplined, and this can give us a lot of benefits if we do it that way.
I would say it is very important to recognize: am I an owl, am I a lark? Because if I go to bed at 10 p.m., but my clock is telling me, you are going to sleep at 2 a.m., it's not going to go well. But we can really recognize that, and it's a small percentage of patients. The majority of us should really do sleep hygiene, go to bed at the same time, get up at the same time, weekend day or weekday — it's irrelevant — and aim for anywhere between six and eight hours of sleep. I think below six is a little bit too little. Above eight may be a little bit too much. If you can just hit that six- to eight-hour mark, I think that would be terrific.
What do we know about getting enough sleep, and why is this so important? We know that for patients who have a good night of sleep, Parkinson's symptoms can be much more manageable the day after. We also know from the work that was done in the past that the responsiveness to our medications that we take for Parkinson's may be enhanced after a good night of sleep. We all know this, whether we are in our 20s, 30s, 50s or 70s, whether we have diseases or not: after a poor night of sleep, we feel terrible.
It seems to me, and it is my interpretation of this Parkinson's sleep benefit that we have known for decades about, that this is just an enhanced problem that patients with Parkinson's disease will suffer just because they have that disease. Their tolerance of a poor night of sleep is certainly less than one who is living without the disease.
Dr. James Beck 00:49:11
Fantastic.
Dr. Aleks Videnovic 00:49:13
Regularity is important. Sorry, sorry.
Dr. James Beck 00:49:15
Sorry, go ahead.
Dr. Aleks Videnovic 00:49:16
I think regularity is really important. I'm really glad you brought this up. This is something that we don't talk about much, and we need to talk more and more in a broader Parkinson's community so that we can both study it and offer easier solutions to our patients.
Dr. James Beck 00:49:31
Along those lines, some people invariably have to get up to go to the bathroom in the middle of the night. Thinking about the regularity you mentioned, trying to minimize screens and things like that, turning on the bathroom light, is that enough to throw off someone's circadian rhythm while they're using the restroom? What do you recommend? Is it night lights? What do you suggest to your patients?
Dr. Aleks Videnovic 00:49:56
That is also an excellent question. Even if one turns on the light for 10 to 15 seconds, that automatically suppresses that melatonin, the very same sleep hormone which peaks during the nighttime. So you turn the light, melatonin automatically goes down to almost zero. Then you turn lights off and melatonin will eventually go up, but it is really disrupting that rhythm.
On the other hand, I think, in terms of the safety of our patients, when I talk about safety of Parkinson's patients, the bathroom in the middle of the night poses the biggest challenge for safety of our patients with Parkinson's disease. If you really have to use that bathroom in the middle of the night, consider maybe a bedside commode. Be very careful as you use that bathroom at night. Here, I need to advocate for good visibility. You may disrupt that melatonin, but if you have to go to that bathroom, let's just make sure you see well. If it's going to bring melatonin down, let's find other solutions that we can find to minimize the need to use the bathroom. This is what I would say about this question.
Dr. James Beck 00:51:12
Got it. It just seems like, is it light intensity? Would a night light help? It's very dim. My bathroom, when I turn the lights on, it's like pshh, because I can't see very well, and so I need to see what little hair I have. I imagine it may be the same for others.
I've actually utilized a lighting strip and have it with red light. I remember my time in the Navy, we had red lights everywhere at night. The idea, again, was to help people because you have to sleep at all times. Is that something that could help? Again, curiosity.
Dr. Aleks Videnovic 00:51:53
Yes, absolutely. The lower the intensity of the light, the better it's going to be for the disruption that you can get. That red light, as a matter of fact, should have no effect in theory, as you mentioned. I think there are modifications that need to be done, and certainly if you can implement them, I would advocate for them. On top of that, I would emphasize the safety with these overnight visits to the bathroom.
Dr. James Beck 00:52:21
Blue light is all the rage, and I'm sure you have some thoughts about that. People like to read. What about Kindles? In theory, it's electronic paper, so it's not giving off light. You need light to see it. What are your thoughts about that? I imagine in order to read it, you need a light someplace, right? It's a catch-22. You're not really helping yourself with a Kindle trying to read in bed, I presume.
Dr. Aleks Videnovic 00:52:47
I don't want to say, okay, you're going to eat your dinner and sit in the darkness until bedtime. That may be great, as a matter of fact, for you, but I am not such a strict person. Turn your shaded lamp on. Watch your TV, enjoy the show, but just don't be so close to the TV. It is all about where the source of the light is, what the intensity of that source of the light is, and what the relationship is with bedtime.
Sitting at the computer, as I look at my screen now, really would not do me a good job. Although, you know, got to do it. The job doesn't stop at 5 p.m., unfortunately. But we should really try to minimize this screen time before bedtime.
Dr. James Beck 00:53:41
Excellent. Again, focusing on the bedroom, which is a good place to be for sleep, several questions have come in about the actual mechanics of it. What kind of mattress do you recommend? What kind of sheets do you recommend? Some people, reading through, talk about having a paralysis, which I imagine they're having an off episode in the middle of the night. What is your advice to these individuals? I presume soft, cushy mattresses are probably not the way to go.
Dr. Aleks Videnovic 00:54:12
That is a great question. We all do have preferences for the mattress type. Usually, it's very hard to make decisions when I'm buying something. Going to the mattress store is usually not a good experience because it's really hard to decide. But for the Parkinson's community, here are some of the tips, especially for those individuals who are with moderate to more advanced disease. Please do not have too-soft mattresses. Make sure that you have satin or materials, both for pajamas and for pillows and covers, that are going to allow you to slide better in the bed and that are going to allow you much, much easier turns.
Believe it or not, these small changes that one can implement make a big difference. I frequently talk about, well, sir, it's time to buy that silky pajama for the next birthday, right, for your wife. These are small things that can make a big difference. This would be my advice in terms of the mattress.
In the earlier stages of the disease, I just really do not think that is becoming an issue. Later in the disease, maybe it can be quite impactful on nighttime sleep.
Dr. James Beck 00:55:38
I can imagine. We've talked a little bit about REM sleep behavior disorder, and it was interesting. I liked the little cartoon with the spouse in the bed with a helmet on. I don't think going to bed with a football helmet would be the way to go for the spouse. What do you recommend for those couples which have that?
We've talked about bedside rails to help keep people from falling out of the bed. It was a really good point you brought up about having beds that are lower to the ground, so if they do fall, it's not as much. The pillows against that. What do you recommend for the spouses? Is it that they need separate beds? Is that what's really recommended, or is it the California king-type of bed?
Dr. Aleks Videnovic 00:56:26
I think that the king-size bed definitely helps, and the bigger the bed, the better for that purpose. Another aspect is maybe one of those long pillows. There are body pillows, long pillows. When we are ready to go to sleep, let's just have that pillow maybe in between, some other pillows, additional pillows, cushioning in the back. That may be useful as one swings.
But you are right. At some point, patients will decide separate, right? They'll say, okay, I really need to go sleep in a separate bed. I have many patients with this disorder who do that. Once we optimize them, we can reunite bed partners because sometimes we then have minor vocalizations or minor movements that usually do not present a problem, but there is some anxiety when we try to reunite them because some of the experiences can be quite traumatic.
Now, I don't want to scare our patient community who is listening or our audience today. This is not happening all that commonly, that there are such violent episodes. This is how we educate patients about what RBD is. But RBD may also be pleasant, with some singing, some pleasant songs or laughing. Not everything is such a violent and injury-prone behavior in the context of RBD.
Dr. James Beck 00:58:01
Thank you. One last question, because I know we're running out of time and I appreciate your time, as you have a lot of things going on. For people who have a hard time getting back to sleep, what do you recommend for them? They wake up, they turn that light on if they have to. How do they get back to sleep?
Dr. Aleks Videnovic 00:58:20
This is the situation where really this requires a conversation, and a really detailed conversation. Why is it? What led to that arousal? Why is it that they cannot go back to bed? For some patients, we may even need to reduce the time in bed. Some patients may be laying in bed totally for 10 hours. That may not be healthy. We need to tell them, you're going to reduce your time in bed to eight hours. That itself can be helpful.
But that particular question, that I think happened to be the last question, is really going to require a more detailed conversation with the treating physician so we can understand what's going on and suggest the best option.
Dr. James Beck 00:59:02
I totally understand. I think that makes sense, and it's a good way to leave this at: this is really a conversation not to just be had here, but with your physician, and as a way with which to arm yourself with some knowledge about what that conversation will entail so you can have a productive discussion with them.
Dr. Videnovic, thank you very much for your time today. Greatly appreciate it. This has been fantastic, and I appreciate everyone who joined us today as part of that. I have to say, as you can appreciate, we had lots of questions come in, and if we weren't able to get to your question, I apologize. We just can't get to them all. You can reach out to my colleagues at our Helpline, 1-800-4PD-INFO. You can email our Helpline as well. We have a number of materials that cover sleep at our website at Parkinson.org. I encourage individuals to take a look at that as part of the process.
We also let you know that research helps play a vital role in understanding Parkinson's. You can go online and find out about ways with which to volunteer and participate in research. Dr. Videnovic mentioned some studies that he is running. I'm sure there are others that are maybe similar, and ClinicalTrials.gov is a great way with which to do that.
We've finished up our Expert Briefings for the spring. We're going to take a little hiatus over this summer and start again in September. Hopefully, people will not be too apathetic to join us, but we're going to look to solve that challenge, apathy, which can accompany Parkinson's disease, as part of that process. Remember to register at Parkinson.org/ExpertBriefings and get the chance to get the emails when it's coming up as part of that process.
Let me remind you again that we're here for you, not only through our website, through our Helpline as part of the process. As we conclude, just a reminder that this is a Zoom world. It'll just go to black, but what will pop up is a survey in your browser window. We encourage everyone to complete that survey. We'll pass on information to Dr. Videnovic, give him some feedback, but also give the Foundation feedback. What are we missing? What more do people want to hear about? Please take that time to spend just a few minutes giving us feedback on that webinar.
I want to thank everyone again for their time, and I look forward to talking to everyone again at our next Expert Briefing in September. Until then, take care.
