Dan Keller 0:08

Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research—the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

A potentially troublesome non-motor symptom occurring with Parkinson's disease is neurogenic orthostatic hypotension, abbreviated NOH, and also called postural hypotension. It's a sharp drop in blood pressure when standing up from a chair or getting out of bed, and is estimated to affect almost 60% of people with PD. It often occurs in the mid to late stages of the disease, but may be present much earlier, with or without symptoms. In general, it's associated with older age and longer duration of the disease.

The arrival of new treatments to address orthostatic hypotension in PD makes it even more important for clinicians to detect the condition to be able to offer treatments to people who need them. I spoke with neurologist Dr. Katie Longardner of the University of California, San Diego, who discussed some of the symptoms, therapeutic strategies, and outcomes of orthostatic hypotension. This podcast is sponsored by Theravance Biopharma. All content is the responsibility of the Parkinson's Foundation. I first asked Dr. Longardner if she would break down the terminology of neurogenic orthostatic hypotension for us.

Dr. Katie Longardner 2:09

So I'll start with orthostatic hypotension. That is a drop in blood pressure when standing up, and it's defined by a drop in systolic blood pressure—that's the top number when you measure your blood pressure—of at least 20 millimeters of mercury, or 20 points, or a drop in diastolic blood pressure—that's the bottom number—of at least 10 points after changing position from either sitting or lying down flat for at least five minutes, when you go from that position to standing up within three minutes. So if your blood pressure drops by 20 on the top number or 10 on the bottom number within three minutes of standing up, that is what we call orthostatic hypotension.

 

The neurogenic part means that the drop in blood pressure is due to a problem with the nervous system, specifically what we call the autonomic nervous system that controls your blood pressure, meaning it's due to a problem with the nerves, not medication or dehydration or some other cause.

 

Dan Keller 3:30

 

Do you find in Parkinson's disease that it's particularly prevalent? What percentage of people might experience it over the course of their disease?

Dr. Katie Longardner 3:40

Great question. So, the studies have shown that somewhere between about a third and about half of people with Parkinson's disease can have orthostatic hypotension, so it is very prevalent, and it's something I'm interested in, because I think it's relatively under-recognized.

Dan Keller 4:00

Now, you said not related to medication, so there I take it is a cause inherent in the disease. But also, can medication also add to it—medication for Parkinson's?

Dr. Katie Longardner 4:15

Yes, and yes. So the disease itself can cause this problem. In Parkinson's disease, the main cause of orthostatic hypotension is a lack of the chemical norepinephrine. That is a chemical that works on the blood vessels to constrict the blood vessels, and so when that chemical is lacking, the blood vessels don't constrict properly when people stand up, leading to low blood pressure. So it is a problem from the disease itself. However, the medications that we use to treat Parkinson's disease, including levodopa, that is the mainstay of treatment—it can also lower the blood pressure, but it's from the disease itself.

Dan Keller 5:07

You said that it's diagnosed by a drop in blood pressure within three minutes of standing up, but how long does it last?

Dr. Katie Longardner 5:16

Good question. So, it could last only a few seconds, or could last for minutes, or it could happen after three minutes, and that's what we call delayed orthostatic hypotension, meaning that it doesn't happen right away within a few minutes, but sometimes people might have this problem after standing for five or 10 minutes, or even longer.

Dan Keller 5:40

Is it mainly diagnosed by patients' reported symptoms, or do you do specific tests in the clinic—measure blood pressure, different positioning—to really nail it down?

Dr. Katie Longardner 5:52

That's a great question. So, the way that we diagnose it is, as you said, measure the blood pressure in different positions, and that could be done in a clinic or in a special laboratory setting with a tilt table that is exactly what it sounds like. It's a sort of gurney-like bed or table that the person lies on, secured with straps, and it can be raised and lowered at different angles to sort of simulate standing up, so we measure the blood pressure in different positions to make the diagnosis.

However, when we do either of those tests, it just represents a snapshot of the person's day, and so just because they don't have orthostatic hypotension when we do those measurements doesn't mean they don't have it at all, so we might miss it doing those tests. With regard to your question about symptoms, a lot of people who have this orthostatic hypotension are asymptomatic, meaning that they don't have the classic symptoms that we think of associated with low blood pressure, such as feeling lightheaded or dizzy or foggy or faint or having vision changes—those are just a few of the sort of most common symptoms. And so people can have very low blood pressures without having symptoms, and if they don't report symptoms, a lot of times people don't check for it, and we don't know yet the clinical relevance, or what is the, you know, the importance of having low blood pressure without symptoms.

Dan Keller 7:30

Right. What are some of the effects of orthostatic hypotension? What happens to the patient? What are the risks?

Dr. Katie Longardner 7:39

The risks are the symptoms, as I mentioned, of feeling lightheaded or dizzy. Sometimes it can cause people to fall and hurt themselves from the fall, or even faint or pass out.

Dan Keller 7:52

When, in the course of the disease, does it occur? Is it from the start, or anytime, or only late?

Dr. Katie Longardner 7:59

Great question. We used to think that it's a later manifestation, but a lot of research has come out recently showing that it can be even the first sign of Parkinson's disease occurring many years before the other symptoms, so it could happen at any point in the disease, and in some cases might be the first symptom that happens years or, rarely, decades before the other symptoms become apparent.

Dan Keller 8:27

When should a person see a doctor for this, and should they come in with some record or idea of what causes it, or what they were doing, or when it happens?

Dr. Katie Longardner 8:38

Yeah, I think anytime someone with Parkinson's disease or anyone that's having some symptoms that are worse when they're standing up, or symptoms when they stand up, should see a doctor about this to be evaluated. I think it's important to address early on, since there are treatments and measures that one can take to improve it. And I've seen before that stressors, such as dehydration or sometimes over-the-counter medications, can worsen orthostatic hypotension, and that can lead to problems, such as falls or fainting, which can, you know, really be a big problem. And so that's what we're trying to avoid.

So I think that anytime anyone has any symptoms when standing up, or if they notice when they're measuring their blood pressure routinely that it's low, they should talk to their doctor about it. In terms of things to bring, it's helpful for people to measure their blood pressure in the positions as we would do in clinic, and that would be either sitting or lying down quietly at rest for at least five minutes, and then standing up and measuring the blood pressure again at three minutes. And each doctor might have a slightly different way of instructing the patient to measure the blood pressure, but that is sufficient to, you know, measure the change from lying or sitting to standing. That's helpful information to have, especially since when we see someone in clinic, it's just a snapshot of their day. So, the more data points we have, the more likely we are to make the diagnosis if it's present.

Dan Keller 10:14

There's so many things that can cause orthostatic hypotension—endocrine problems, thyroid, anemia, all sorts of things. If someone comes in with it who has Parkinson's disease, do you run a full metabolic panel, or do you assume first off Parkinson's is the cause?

Dr. Katie Longardner 10:32

Yes, I think that's a great question. I think sometimes when a person has Parkinson's disease, we tend to blame a lot of the symptoms on Parkinson's disease. It's important to remember that they might have more than one thing, so I do recommend getting blood work and checking for other causes if that hasn't been done recently.

Dan Keller 10:51

What are some of the possible treatments, ones you can provide or ones that people can do for themselves?

Dr. Katie Longardner 10:57

So, there's two main categories of treatments: one is non-pharmaceutical or non-medication, and the second kind is medication. Whenever anyone sees me with orthostatic hypotension, the first step is to look at their current list of medications and supplements and see if they're on anything that could be lowering their blood pressure, and to first eliminate anything that might be lowering the blood pressure—of course, with the collaboration of their primary care doctor or cardiologist, or whoever's prescribing the medication. Oftentimes people are on antihypertensives or might be on other medications, such as antidepressants or medications for prostate enlargement that could lower the blood pressure, so first to eliminate anything that could be worsening the situation.

The next thing after eliminating medications is to do non-pharmacologic measures. That includes drinking plenty of fluid, at least 64 ounces or two liters of water a day; adding extra salt to the diet, at least one to two teaspoons of extra salt. There are devices such as abdominal binders—that is kind of a cinch that goes around the waist and compresses the veins to increase blood flow back to the heart—that can improve the problem, or compression stockings that come up to the waist. Also, lower body strengthening exercises can help by strengthening the leg muscles that also squeeze blood from the legs back up to the heart to improve the circulation. Those are all some things that people can do to improve the problem without medications.

Dan Keller 12:46

What about elevating the head of the bed, since they would then start in a little bit more upright position when they get up?

Dr. Katie Longardner 12:54

Yes, that is another important thing to do. We usually tell people to buy a furniture wedge that you can put underneath the mattress that elevates the head of the bed. Other things that people can do include eating smaller and more frequent meals, because sometimes a large meal can divert blood to the organs of digestion away from the circulation again, and that can improve the problem, and to avoid alcohol, which can also drop the blood pressure more. The sort of simple thing to do is to be slow when changing positions from sitting or lying to standing and not jumping up.

Dan Keller 13:40

What kind of outcomes do you see, both good and bad, in the long term?

Dr. Katie Longardner 13:46

Yeah, it's a hard problem to treat because it's always fluctuating. Blood pressure is so dynamic and changes, you know, minute by minute in response to position and internal and external factors. I think the worst outcomes are what we're trying to avoid, that is the fainting or the falling, resulting in fractures or injuries or hospitalizations. In terms of the good outcomes, I have seen people that are treated appropriately, and their symptoms are much better, and their daily function is much better, and so I think it's important to realize that this is a treatable problem. It's not an easy problem to treat, but we do have treatments.

I'll just mention briefly the agents that we have available to treat orthostatic hypotension. One is fludrocortisone, that is a steroid type of medication. Midodrine and droxidopa are two others that are FDA approved for orthostatic hypotension, and pyridostigmine is another one that we sometimes use, but certainly we need more options to treat this problem. All of these medications work by increasing the blood pressure, and they should be taken in the first half of the day because one thing I didn't mention yet—but it's sort of the flip side of orthostatic hypotension—is that oftentimes people with orthostatic hypotension, that is low blood pressure when standing, will have too high of a blood pressure when lying down. That's what we call supine hypertension. And so the problem is a dysregulation of blood pressure, that it's too low when they stand up and too high when they lie down. And so for that reason, it's an especially hard problem to treat, since we're aiming for somewhere in between, and medications that raise the blood pressure when people stand up also would then raise it when laying down. It complicates the treatment.

Dan Keller 15:52

Are there trials in this area, and can they benefit people by joining them?

Dr. Katie Longardner 15:58

Yes, there are trials. We are looking at different agents that can help to treat the symptoms, and so there's a few trials ongoing investigating new therapies.

Dan Keller 16:12

I looked at a couple of your—well, an abstract and a paper. You had this paper on cognitive decline after orthostatic hypotension. Is it more of a marker or a causative process? Possibly through decreased cerebral perfusion, probably in short bursts, might account for that, I would guess, or is it just a marker of neuronal dysfunction, something else of which may be leading to the cognitive decline?

Dr. Katie Longardner 16:44

That's the golden question, and that is what I'm interested in studying. We don't know—it could be both. It could be that orthostatic hypotension over time contributes in some way to cognitive dysfunction by damaging the brain from, as you said, repeated hypoperfusion, or it could be that people with orthostatic hypotension have a more severe form of the disease, and it's a marker. So that's what we have not figured out yet, but my hypothesis, and what I'm interested in studying, is if we modify orthostatic hypotension by treating the low blood pressure, could we prevent some of these outcomes of worse falls and worse cognition and more hospitalizations?

Dan Keller 17:29

That's a moderately long study, I would take it.

Dr. Katie Longardner 17:32

Yes, it's going to be in parts, but many people are studying the same disease process, and so hopefully with collaboration we can answer some of these important questions, because I think anything that we can do to prevent cognitive decline is a huge improvement for people with Parkinson's disease.

Dan Keller 17:53

Have we missed anything important or anything interesting to add?

Dr. Katie Longardner 17:58

Yeah, I would just add, as I said, and emphasize that just because people don't have symptoms doesn't mean that they shouldn't be screened for this problem. My research interest is, and others are studying this too, is that there may be similar problems from orthostatic hypotension in terms of falls, hospitalizations, and function regardless of whether people exhibit the classical symptoms of lightheadedness and dizziness, and so I think it's important for anyone with Parkinson's disease to be screened for this using the positional blood pressure measurements as we discussed.

Dan Keller 18:41

Very good, I appreciate it. Thank you.

More information on neurogenic orthostatic hypotension is available in our series of expert briefings at parkinson.org/eb1 by Dr. Ronald Pfeiffer from January 2019 called Nonmotor Symptoms: What's New. It says the condition occurs in almost six in 10 people with PD, many of them without symptoms. The expert briefing describes the problem, the goals of treatment, and some non-pharmacologic and pharmacologic approaches. You can also find fact sheets and publications addressing NOH by visiting parkinson.org/library. MedlinePlus at medlineplus.gov has extensive information about orthostatic hypotension, including information on some of the drugs used to treat it.

If you're interested in reading about clinical trials, or even possibly participating in one, take a look at clinicaltrials.gov and search the site for orthostatic hypotension and Parkinson's disease. The site lists several trials being conducted in the US and internationally, as well as the results of some completed trials, either on the site or via links to published papers from the studies.

As always, our PD information specialists can answer questions and provide information in English or Spanish about today's topics or anything else having to do with Parkinson's. They can also help you find a neurologist in your area specializing in movement disorders. You can reach them at 1-800-4PD-INFO.

To receive news and updates about future events and resources, you can opt into our email list at the bottom of our website's homepage. If you have questions or want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed the podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts.

At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. This podcast was sponsored by Theravance Biopharma. Thank you for listening.

Katherine ("Katie") Longardner, MD, earned her medical degree at Florida State University College of Medicine. She completed her internship, neurology residency, and two-year movement disorder fellowship at University of California San Diego (UCSD) Health. Dr. Longardner is a board-certified neurologist and movement disorder specialist who diagnoses and treats a variety of adult movement disorders, including Parkinson's disease, atypical parkinsonism, as well as tremor, myoclonus, dystonia, tics, and other hyperkinetic movement disorders. Her research focuses on parkinsonian non-motor symptoms, especially the relationship between orthostatic hypotension and cognition Parkinson's disease and related disorders. She developed an interest in orthostatic hypotension when she realized that this is an under-recognized yet treatable non-motor symptom that can be debilitating. She is currently collaborating with Dr. Sheng Xu's research team from the UCSD Dept. of Bioengineering to validate a non-invasive ultrasonic blood pressure monitor for continuous monitoring in orthostatic hypotension. Another research interest is utilizing non-invasive electrophysiological techniques to study movement disorders such as tremor.

Elsa Baena, PhD, es neuropsicóloga en el departamento de neuropsicología clínica y en la unidad de neurorrehabilitación intrahospitalaria del Barrow Neurological Institute.

La experiencia de la Dra. Baena incluye la evaluación neuropsicológica y rehabilitación de individuos con una variedad de diagnósticos neurológicos, incluyendo condiciones neurodegenerativas, lesiones cerebrales adquiridas, enfermedades cardiovasculares y tumores cerebrales. También realiza evaluaciones pre y postquirúrgicas para la estimulación cerebral profunda (ECP o DBS, por sus siglas en inglés) y la cirugía de epilepsia. Domina el inglés y el español y es miembro de la Hispanic Neuropsychological Society, la National Latinx Psychological Association, la American Academy of Clinical Neuropsychology, la International Neuropsychological Society y la National Academy of Neuropsychology.

Dan Keller 0:07
Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. Sleep problems are common in the general population, and the effects of poor sleep extend far beyond just feeling tired. For people with Parkinson's disease, sleep disturbances are even more widespread and affect greater than 75 percent of individuals. Today, we'll focus on one condition in particular: REM sleep behavior disorder, or RBD. Dr. Aleksandar Videnovic, chief of the division of sleep neurology at Massachusetts General Brigham, explains why sleep problems are often underreported by patients and underdiagnosed by health professionals. RBD can be disturbing to the person with it and their bed partner, and can even be physically dangerous. We're joined also by Caron Gan and John Poma, members of the North American Prodromal Synucleinopathy, or NAPS, consortium, who share their personal experience living with RBD. I started off by asking Dr. Videnovic to explain what REM sleep behavior disorder is and what causes it.

Dr. Aleksandar Videnovic 1:47
It belongs to the group of sleep disorders that are known as parasomnias. And what does this parasomnia term mean? It really reflects, and if you translate it, it means unusual behaviors which happen during sleep. And this REM sleep behavior disorder, as its name says, occurs during a specific stage of sleep, which is called REM sleep. During this part of sleep, REM sleep, we usually experience dreaming. During this part of sleep, REM sleep, our body is also paralyzed, so we cannot move except our muscles that support breathing—they are still active. Somehow, in this condition, REM sleep behavior disorder, that paralysis while we are in REM sleep disappears; it's gone. So, meaning we can move as we go through that REM sleep, and that is one cardinal feature of this condition, REM sleep behavior disorder. But then there is this segment that is relevant to dreams. In RBD, patients usually experience very action-packed and vivid dreams, which are in approximately 90% dreams that are filled with a negative emotion. Patients usually experience either fear or anger. They find themselves in very unpleasant situations. Frequently, they need to defend themselves, and then you tie that back with the loss of muscle paralysis during REM sleep. That means that those individuals can now act out their dreams. For example, if somebody is threatening them, they will try to defend themselves, and they can shout or scream or bend their arms or even throw themselves out of the bed. And this is in a nutshell description of what REM sleep behavior disorder is. Its cardinal symptom, its cardinal manifestation, is dream enactment, and dream enactment occurs on the basis of loss of normally present muscle paralysis that normally accompanies that REM sleep. Usually, there is really no known cause of REM sleep behavior disorder in the majority of cases.

Dan Keller 4:17
How common is RBD, and how does it come into play in Parkinson's disease?

Dr. Aleksandar Videnovic 4:24
Well, the newer studies have shown that this condition is much more common than originally estimated. We believe now that somewhere between 1 to 2% of individuals may be affected by this condition, especially those that are older than 50 years of age. And today we really understand, due to extensive research conducted over the past few decades, that in a large number of cases, it really presents a problem of an evolving neurological disease that can either evolve into Parkinson's disease or a Lewy body disease, or in small percentages of patients into something that's known as multiple system atrophy. So, RBD in a really large number of patients represents a prodromal, preclinical stage of this group of disorders that are known as synucleinopathies.

Dan Keller 5:32
What's the impact of RBD in itself, both physically and mentally?

Dr. Aleksandar Videnovic 5:38
Obviously, if one starts yelling and screaming and shouting, moving, thrashing during sleep, that fragments the sleep for that individual that is going through it. Yeah, our patients with dream behavior disorder act out their dreams. They are at risk of injuries. They can fall out of bed in the middle of the dream enactment, or they can hit their head on their nightstand, etc. But they also pose a risk to their loved ones, to their spouses, their bed partners, and therefore safety is a really significant concern for patients with REM behavior disorder and their loved ones. And obviously, now that I mentioned the link between REM behavior disorder and neurodegenerative diseases, obviously there is an impact of having this disease on brain health and risk for that brain health in years and decades to come after the disease is diagnosed.

Dan Keller 6:40
If people experience some of the symptoms you've described, when should they consider seeing a healthcare professional?

Dr. Aleksandar Videnovic 6:49
That is a really very important question, and why do I say that? Because this problem is really underreported by patients and underappreciated by health providers. Just let's put ourselves in a situation: if we have one bad dream, or if we yelled or screamed, or maybe swung the arm and maybe hit our bed partner, you know, frequently we don't think much about it, right? There is so much going around us that we don't think about one bad dream as a big issue naturally nowadays, and this frequently causes delay in diagnosis. And frequently, these behaviors are repetitive. They will not happen only once or twice; they will come back, and when something like this starts to happen, I would recommend that individuals who experience it reach out to their primary care doctors, to their neurologists. And a lot of patients in our Parkinson's community will experience REM sleep behavior disorder. Thinking about RBD in addition to all of other things that can go wrong with the sleep in Parkinson's disease is very important for our PD community. It is also important to mention that not everything that looks and sounds like RBD is RBD, and we just really don't want to cause a lot of alarm in the general public or even in individuals who have Parkinson's disease, because some of them may not experience symptoms of behavior disorder. As equally as important as it is to know and pay attention to the symptoms, it is important to think through what other causes may be resulting in these types of behaviors.

Dan Keller 8:34
What treatment options and resources are available for people experiencing RBD?

Dr. Aleksandar Videnovic 8:42
When we talk about the treatment of REM sleep behavior disorder, there are several elements that are really very important. We start with education: educating patients, educating bed partners. Then we address the safety elements of having this condition. It is really important to assure a safe sleeping environment, and this means that if there are some glass lamps or other sharp objects on a nightstand or in the vicinity of the bedroom, these need to be removed. Sharp edges of nightstands, for example, or hard surfaces like headboards, etc., should be padded, protected by extra pillows, perhaps. Sleeping in a bigger bed is much better than sleeping in a tinier bed because the risk for injuries to self or to a bed partner is going to be less if there is a larger bed, and risk for injuries is also going to be substantially smaller if patients are sleeping in beds that have a lower platform. So these are some of the general sleep safety principles that we need to educate our patients about, and that are applicable to any sleeping environment. Obviously, not only to their bedroom, right? When they travel, when they visit kids, relatives, these elements need to be accounted for. We usually prescribe two groups of medications for managing REM sleep behavior disorder. One is melatonin, which is considered a supplement and can be purchased over the counter, and another class of drugs is the benzodiazepines. These are two groups of medications that have been shown can effectively reduce the frequency and intensity of these dream enactment behaviors. Sometimes we will combine these two medications, these two classes of drugs, in cases of more resistant symptoms of RBD. And I would leave it at this: there are several other medications that have been anecdotally reported to be beneficial, but I would focus either on benzodiazepine medication or melatonin or a combination of these two, and I would leave it at that. In terms of resources, I would really like to bring up the significance of research that has expanded substantially over the past decade, especially on the topic of REM sleep behavior disorder. This is important now more than ever because we really do have an opportunity to develop and test potential therapies that may prevent development of Parkinson's disease and other synucleinopathies by intervening earlier. What do I mean earlier? Well, we have patients with REM sleep behavior disorder, many of them who may be on the road to developing Parkinson's or Lewy body disease, and now we can interfere years and sometimes a decade before signs of Parkinson's or dementia emerge. And therefore, it is really important to stay at it and continue to develop this research further. And in light of those efforts, the NAPS Consortium was formed, and NAPS Consortium stands for North American Prodromal Synucleinopathy RBD Consortium. It brings together clinicians and scientists from nine academic medical centers in North America, and brings together over 300 individuals with REM sleep behavior disorder, and we are really fortunate to have two of them join us today on this podcast. The objective of this NAPS Consortium is to understand progression of this condition into a neurodegenerative disease, and to really enable us to understand who are those individuals who are having RBD symptoms, who are at risk of developing neurodegenerative disease, when that may happen, and ultimately it positions the NAPS Consortium to develop, as we have already done, a clinical trial-ready cohort of individuals in the very early stages of neurodegeneration who may benefit from these novel therapeutic advances. And I'm sure that Caron and John, who participate in the NAPS Consortium, will still be able to reflect on their experiences and what this meant to them as patients and research participants.

Dan Keller 13:26
While clinicians continue to learn more about RBD, many people living with Parkinson's say they had never heard of it until they've experienced it themselves. To help us better understand the real impact of RBD, as Dr. Videnovic said, we're joined by Caron Gan and John Poma, who are on the patient engagement board of the NAPS Consortium. Can each of you describe what you've experienced with RBD, and starting off especially with the early days and what you experienced? Caron, why don't you go first?

Caron Gan 14:06
Sure, thank you, Dan. My RBD journey started about 10 years ago with what my husband described as blood-curdling screams. He said they were so terrible and frightening, it sounded like someone was being murdered, and it scared the living daylights out of him because he didn't know where this was coming from and what prompted that. And I couldn't really remember the dream, so initially these dreams were quite random and infrequent. Thank goodness. So I chalked it off as stress or as something else, but over time they recurred and they became more frequent, and the intensity remained the same. But they also became accompanied by physical movements, so throwing punches, thrashing my arms, moving my body. Trying to punch and eventually jumping out of bed and falling out of bed and hurting myself. Half my face was bruised and half my body, and so that prompted me to seek consultation and get a sleep study where I was formally diagnosed with REM sleep behavior disorder, and I had never heard of this term before. And it was around the time of COVID that I received the diagnosis. So it would have been about seven years after I started getting RBD symptoms. So it was quite late on, and I was told that it was a precursor to Lewy body dementia, which really frightened me, and I eventually learned that I was not given full information to help me proceed. So I had to do my own research. I had to try and figure out stuff, and the one website where I found reliable, helpful information was the NAPS website. I felt I could count on them for good information, and that's where I reached out to them actually and became enrolled in their NAPS study. And at the time, I had not yet been diagnosed with Parkinson's. About two or three years into the NAPS study, I was eventually diagnosed with Parkinson's, and because I had learned much more through the NAPS website and my consultations, I felt it better prepared me for the eventual diagnosis. It was upsetting to get, of course, but it nonetheless provided a bit of a soft landing for me at that time.

Dan Keller 16:48
John, what were your experiences? Were they similar or different?

John Poma 16:53
No, I would say the experiences are similar. Caron and I do share a lot of similarities, and you know, there are some differences because everybody does experience it a little bit differently. My first experience that we recall was not a blood-curdling scream for me. It was actually my wife flying off the bed, landing on the floor, hitting the nightstand, and yelling at me like, "What are you doing?" And I was having a fight-or-flight dream, and I attacked her in my dream and caused her to fall off the bed. You know, and she's the one who ended up initially, you know, with the bruise. In the beginning, we had no understanding that this could be related to a synucleinopathy or a neurodegenerative disease. We chalked it up the next morning to just being some random event. Mary Beth said, "You must be under more stress at work than you realize." And I said—we still went through a period we don't remember very well—you know, Mary Beth said, "I think you might have restless legs syndrome," and you know, sort of an isolated event. And then another, you know, really significant event happened again where I attacked her in my sleep. She said, "You know, I really think you need to go talk with somebody. There's something wrong. You're doing odd things in your sleep." And I had been using CPAP since I was in my mid-to-late 30s. I just assumed, "Oh, my sleep apnea must be getting worse." And I went online, you know, started trying to research and found my way to a neurologist at Virginia Commonwealth University, and told her my story. And she immediately said, "You know, I think you have something called REM sleep behavior disorder." I went for a sleep study. The sleep study confirmed it. Over time, my RBD has changed. I mean, initially, my only real memories of it were those events of that fight-or-flight type of dream. It now involves everything that Caron said, and the RBD can take many different forms. There are some days, some nights with the blood-curdling scream. You know, I yell. "People, guests, get here! Get out of the house! Call the police!" And you know, at the top of my lungs, or I've had full conversations in my sleep. I was an adjunct law professor, and I've had some conversations, you know, that were just lengthy conversations. Again, there has been, you know, the attacking of your bed partner, being the falling out of bed, and I thought sort of naively that if you develop Parkinson's later, that RBD would stop. I thought when they talked about it converting, you know, that meant you would no longer have RBD. My RBD has continued, has also continued to progress, and it's also continued to be one of the more difficult non-motor symptoms to challenge and navigate.

Dan Keller 19:41
What's it done to your Parkinson's symptoms as well as relationships, or say overall quality of life?

John Poma 19:50
Well, I would say that RBD has impacted quality of life probably more than other Parkinson's symptoms. In terms of how does it impact your life: it definitely impacts your bed partner. It's not a condition that just affects the individual. It impacts the marriage unit or the partner unit. One of the creative things that we have done—again, I was diagnosed during COVID—I bought a plexiglass shield. I took insulation used around pipes, and I put edging around the plexiglass shield. We have an adjustable king bed now. Last thing we do before we go to sleep is we put that shield between us. Although it protects her, it does cause some emotional separation. It's hard for it not to, you know, cause some separation. I think, you know, as Dr. Videnovic talked about, it causes fragmented sleep, and fragmented sleep has its impact the following day. I call it the spillover effect. It definitely impacts my Parkinson's motor symptoms. It impacts fatigue. It makes fatigue and exhaustion worse. You know, I think it does impact other motor symptoms. Impacts thinking. For me, I always say, you know, there is a little bit more of a brain fog when I've had a particularly bad night. So I think the two are sometimes, you know, they're interconnected. I think it can be hard to separate the Parkinson's from the RBD sometimes because they are intersecting and overlapping with each other. But some of my worst Parkinson's days are after a bad RBD night.

Dan Keller 21:25
Caron?

Caron Gan 21:26
Yeah, I would definitely agree with John. For me, the most troubling symptoms are the RBD symptoms, more so than the other Parkinson's symptoms like the motor issues. But it does have this overall effect on different aspects of my well-being. So sometimes, you know, after a very intense dream, it could feel like I haven't slept all night. It could feel like I've been fighting off aliens or fighting off bad guys, and so those are the days I wake up extremely fatigued, and the rest of my day I have less energy. I'm not as sharp. I'm not able to be as active in different things, and so I have good days, I have bad days. And the nature of my dreams has changed as well, like John has talked about. Not all my dreams are violent or aggressive. A lot of them have become quite conversational over time. So my husband says I talk a lot in my sleep, so it wakes him up as well, and it affects his fatigue level. But the interesting thing is, I, like John, have been giving lectures in my sleep, and I've even been doing psychotherapy sessions with my clients in my sleep. And so, if anybody wants a free psychotherapy session, they can line up in my sleep. And more recently, I've had these fits of laughter, and so Dr. Videnovic had talked about how 90% of the dreams tend to be negative or violent or aggressive. But more recently, I've had these fits of laughter dreams. I don't know where they come from. I don't remember what's so funny, but my husband has to stop me because I'm laughing so hard. He worries I'm going to have a heart attack, and I'm hitting the bed because I'm laughing so hard. So it's really interesting how the dreams evolve over time, and I don't know what this means. I don't know if there are any gender differences around the content of dreams, so those are questions I'd be really curious about.

Dan Keller 23:53
Anything on that, Dr. Videnovic? This is different from pseudobulbar affect?

Dr. Aleksandar Videnovic 24:00
Well, thank you for mentioning this. Because really, there are 10 to 15% of patients who experience very pleasant dreams. You know, they talk about beautiful flowers in the garden that they are walking through, or they are singing. You must have heard a good joke or something along those lines. And we really do not understand this variability, and it is really important to point out that that variability is very significant, as Caron has rightly pointed out. Both intensity and frequency of these dream enactment episodes fluctuate in time, and if one didn't have anything for three or four months, the following week may bring four or five of these events, sometimes even on a single night. So that is why it's important to really remain vigilant about these symptoms and pay attention to overall sleep, but certainly RBD symptoms as well.

Dan Keller 24:55
Do either of you have strategies you've developed to deal with the RBD symptoms? Caron first, I guess.

Caron Gan 25:04
Yes, I definitely have experimented with different things in my life, and have found certain things can be aggravating of the dreams. So, if I eat too late, if I have a big meal, if I consume alcohol, if I don't pace myself and I'm overstimulated during the day and overwhelmed, if I'm dealing with extra stress—so those all seem to be aggravating factors. And things that help are, number one: following a really strict sleep routine. Go to bed the same time every night, wake up the same time every day, and even with sleep fragmentation and being up sometimes because of the dreams, I still follow those same schedules. I stop eating and drinking fluids other than for medications after 6:30, so I have a period of about 12 hours of fasting. That seems to have helped. Managing my stress seems to lessen the frequency of the dreams, and maintaining a really healthy lifestyle of nutrition. And most important for me has been exercise. So I've joined Rock Steady Boxing, and it's a non-contact boxing program for people with Parkinson's. I attend three times a week, and for me, it's almost like a dose of medication. When I miss the exercise routine, I feel more lethargic. I have less energy. It's harder for me to catch up. So, maintaining all those lifestyle things and choosing to live a healthy lifestyle certainly does make a difference for me.

Dan Keller 26:56
John, do any of those work for you? Do you have other strategies?

John Poma 27:00
You know, I mean, I would just add on a little bit. I agree completely with everything that Caron has said in terms of both daytime routines and nighttime routines. And one of the things that I try to do is even keeping a sleep diary. And sometimes I just do it myself on my phone, but keeping track of events and when they happen and what your day is like, I try to find the pattern. I also do use a sleep app I find very helpful. There are many times that I don't know that I have had an event at night, and my sleep app will record it. Ask your bed partner what they have observed; you know, that's particularly important. I think putting all of that together, why that's important, is so you can have good communication, communicate changes with your physician, work together with your physician, you know, to sometimes adjust medication timing. And we've tried, you know, different strategies of when we take medication in trying to address the events. But again, just to reiterate what Caron has said: managing stress, you know, maintaining mood. And one thing I always say when I talk about it is just also give yourself some grace, give yourself a sense of humor. It can be unsettling, and I think one of the most important things you can do for yourself is try not for it to be upsetting and to laugh at it. Because you know, I mean, if you keep your sense of humor, it really does make a big difference for everyone, I think, reduces some of the anxiety, and I think that really is key for managing symptoms.

Caron Gan 28:27
I think it's really important to have an RBD buddy because it can be very isolating living with RBD, and I have found it very helpful comparing stories with John. And there's one other person in my boxing group that we compare stories with, and you know, we can laugh about some of them and make light of them. So you know, I would really recommend that people also develop or find an RBD buddy.

Dan Keller 29:01
What advice would you give to people who are experiencing similar symptoms but really don't know what's going on, and what should they do?

John Poma 29:12
So I think—I work in healthcare and work in and around a lot of primary healthcare providers—definitely talk with your primary healthcare provider. I'd had several visits before I mentioned anything to a physician because it was somewhat embarrassing. You don't walk into your doctor and say, "Hey, guess what? I attacked my wife in her sleep last night," you know, without sort of getting... But I think it is very important if you are having any of these symptoms to talk with your healthcare provider. It may be REM sleep behavior disorder, or it could be related to something else. But without having that conversation, you really don't know.

Dan Keller 29:59
For more on REM sleep behavior disorder and information in general on sleep in Parkinson's disease, including tips on getting better sleep, search our website at Parkinson.org for RBD. That's the letters RBD. As always, our PD information specialists can answer questions and provide information in English or Spanish about this topic or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. If you'd like to leave feedback on this episode or to let us know what other topics you'd like us to cover, visit Parkinson.org/Feedback. Be sure to subscribe and rate us on Apple Podcasts or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every month. Till then, for more information and resources, visit Parkinson.org or call our toll-free helpline at 1-800-4PD-INFO. That's 1-800-473-4636. Thank you for listening.

Aleksandar Videnovic, MD, MSc is a Professor of Neurology at Harvard Medical School, Chief of the Division of Sleep Neurology at Mass General Brigham, Director of the Division of Sleep Medicine at MGH, and Director of the MGH Program on Sleep, Circadian Biology and Neurodegeneration. He completed Neurology residency at Northwestern University Feinberg School of Medicine in Chicago, followed by fellowships in Movement Disorders at Rush University and Sleep Medicine at Northwestern University. 

His clinical activities include the diagnosis and treatment of a wide spectrum of movement disorders and co-existent sleep dysfunction associated with these disorders. His research programs are focused on the interface of sleep, circadian biology and neurodegeneration, as well as on clinical trials in sleep and neurodegenerative disorders, with an emphasis on Parkinson's disease. 

Dr. Videnovic serves on numerous scientific committees within professional organizations, including the American Academy of Neurology, the American Academy of Sleep Medicine, the International RBD Study Group and the Parkinson Study Group.

Caron Gan of Toronto, Ontario, is a retired Advanced Practice Nurse, Registered Psychotherapist, and Family Therapist whose 40-year career in healthcare and research focused on supporting individuals and families navigating the life-changing impact of brain injury and neurological illness. Throughout her career, she listened to their stories, helped families adapt, and learned from their extraordinary resilience. Her work led to conference presentations across Canada and internationally, as well as research and publications exploring family needs and adjustment after neurological injury.

Today, Caron brings a unique perspective—not only as a healthcare professional, but as someone living with a neurological disease herself. Diagnosed with REM Sleep Behavior Disorder (RBD) in 2021 and Parkinson's disease in 2023, she now advocates for greater awareness, education, and research from the lived-experience perspective.

When she's not enjoying time with her grandchildren or training at Rock Steady Boxing, Caron is actively involved in Parkinson's and RBD research and advocacy. She serves on the Community Engagement Board for the NAPS Consortium, is a Lived Experience Reviewer and Advisor for Parkinson Canada Research, and is a Patient Advisory Board member with the Movement Disorders Clinic at the University Health Network in Toronto.

John has a passion in his professional life for working with physicians to improve healthcare outcomes. As a person living with Parkinson’s disease, John’s focus has shifted to how he can help improve the lives of persons living with Parkinson’s Disease and help researchers better understand the progression of Parkinson’s Disease by participating in several clinical studies for both REM Sleep Behavior Disorder and Parkinson’s Disease.

He consistently uses his voice to raise awareness of REM sleep behavior disorder and the lived experience of Parkinson's through local and national media. He partners with healthcare providers at Virginia Commonwealth University, a Parkinson’s Foundation Center of Excellence and beyond — including researchers at Mass General and Harvard — to advance the Foundation's mission. John believes in empowering others through education and has spoken at major events, including the Planning for Prevention of Parkinson's conference.

“One of the guiding principles of my longtime professional career in and around healthcare is that helping one person may not change the world, but it may change the world for that one person.”

00:00:02
It's a common misconception that Parkinson's disease only affects movement. Many people believe PD only causes motor symptoms like tremors, stiffness and slowness of movement. However, non-movement symptoms of Parkinson's, ones you can't see, are extremely common and can be even more bothersome than movement symptoms. Here are 10 Parkinson's disease symptoms that might surprise you. 

1. Loss of smell. Loss of smell, also called hyposmia, is a common early sign of Parkinson's disease, sometimes appearing years or even decades before diagnosis. Our sense of taste is enhanced by our ability to smell, meaning hyposmia can lead to a reduced enjoyment of food and reduced appetite. If you or someone you love has trouble smelling foods like bananas, dill pickles or licorice, ask your doctor about Parkinson's.

2. Dizziness. Vertigo and balance problems are common in Parkinson's, often caused by neurogenic orthostatic hypotension, medications or age-related issues. Managing symptoms can include monitoring blood pressure, staying hydrated, wearing compression garments, eating small meals, exercising gently and changing positions slowly.

00:01:19
3. Vision changes. Parkinson's can cause double vision, dry eyes, blurry vision, trouble reading and difficulty opening the eyes. Management strategies include regular eye exams, using prism glasses, artificial tears, warm compresses and lifestyle adjustments, like reducing screen time and staying active.

4. Small handwriting. Handwriting can change as you age, especially if you have poor vision or stiff hands or fingers. However, small, cramped handwriting, called micrographia, is characteristic of Parkinson's. It is frequently one of the early symptoms. With this symptom, words can become small and crowded together, and the size of your handwriting might get progressively smaller as you write.

5. Mental health challenges. Mental health challenges in PD, including depression, anxiety and apathy, are part of Parkinson's itself, resulting from Parkinson's-related changes in brain chemistry. Parkinson's disease impacts areas of the brain that produce dopamine, norepinephrine and serotonin, chemicals involved in regulating mood, energy, appetite and sleep.

00:02:34
6. Excessive drooling, also called sialorrhea, is caused by a reduction in automatic actions, including swallowing, that creates an inability to manage the flow of saliva in and around the mouth. In PD, usually the amount of saliva produced is normal, but swallowing issues, like swallowing less often or not completely, can lead to saliva pooling in the mouth.

7. Fatigue. Fatigue is a feeling of deep tiredness that does not improve with rest. About 50% of people with Parkinson's report that fatigue is a major problem, and one-third say it's their most disabling symptom.

8. Skin changes. Many people with Parkinson's disease develop oily or flaky skin, especially on the face and scalp. Others have trouble with dry skin or excessive sweating. Studies have also shown an increased prevalence of melanoma skin cancer among people with PD.

00:03:34
9. Incontinence. Bladder problems are common in Parkinson's disease due to changes in brain signaling that affect bladder control. Bowel incontinence can also occur in PD. With careful diagnosis and treatment, many people can manage symptoms effectively with the help of their healthcare team.

10. Sleep challenges. Sleep challenges affect more than 75% of people with Parkinson's, including difficulty falling asleep, restless legs and acting out dreams. Some medications can also cause daytime sleepiness and sleep attacks.

It's important to remember that Parkinson's impacts people in different ways. Not everyone will experience all the symptoms of PD. Even if people do, they won't necessarily experience the symptoms in the same order or at the same intensity. To learn more about the symptoms of Parkinson's disease, visit Parkinson.org/Symptoms.

Martha Suárez Torres es Terapista de Lenguaje con más de dos décadas de trayectoria dedicada a la rehabilitación clínica y la investigación en Parkinson. Su sólida formación internacional incluye entre otras cosas, la certificación del Team Training Program de la Parkinson’s Foundation, su participación en el Train the Trainer Program de la International Parkinson and Movement Disorder Society y ser proveedora certificada de la Terapia SPEAK OUT! para Parkinson. Como Embajadora Líder de la Davis Phinney Foundation for Parkinson´s y miembro activo de la Asociación Civil Parkinson Caracas en Venezuela, se dedica a brindar herramientas y bienestar a la Comunidad Parkinson. Esta labor, que combina el rigor científico con la empatía, es impulsada también por su experiencia de vida como esposa de una persona con Parkinson, lo que le permite conectar con las familias y fortalecer el bienestar integral de quienes viven con esta condición.

Dan Keller 0:02
Dan, welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller, at the Parkinson's Foundation. We want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. Most people with Parkinson's disease will experience gastrointestinal problems at some point in their journey, making the gut microbiome a big focus of Parkinson's research over the past decade. Today I'm speaking with movement disorders neurologist Dr. Lisa Deuel of the University of Vermont Medical Center. She explains how the gut and brain are connected and discusses common gastrointestinal problems in Parkinson's, such as constipation and slowed stomach emptying, called gastroparesis. She also shares practical strategies to support gut health. So I first asked her to put in perspective the gut microbiome as it relates to Parkinson's. 

Lisa Deuel 1:20
The microbiome is a term we're hearing a lot more, and what that refers to specifically, with regards to the gut, is the microbes—so, any bacteria and viruses that essentially live, in this case, in the gastrointestinal tract. You can have a microbiome other places in your body as well, but when we think about the microbiome as it pertains to Parkinson's, we're often talking specifically about the gastrointestinal tract. And I think of it, you know, we're almost trained to think of bacteria and viruses as being bad and being associated with illness and infection, but this microbiome is actually part of what we call a healthy gut, and needs to be there in order for the gut to work properly. It's there from birth, and there's a lot of different things that can shape the microbiome. So, just even the way that you're delivered at birth can impact what your microbiome ends up looking like; your genetics can play a role in what your microbiome looks like, and as we'll talk about, we know that the microbiome tends to look different in people with certain diseases, including Parkinson's disease.

But the microbiome is really important because it helps our bodies to develop a healthy, working immune system. It helps with the way we digest food and absorb nutrients and vitamins from our food. It actually—some of the bacteria produce chemicals that actually help to communicate from the gut to the rest of the body, including the brain. So, it gives signals communicating what's going on in your gastrointestinal tract, and then, you know, how that impacts the rest of your body. So, it actually not only impacts just the gastrointestinal tract, as we would assume, but it really has connections with the entirety of the rest of the body.

Dan Keller 3:16
And a normal microbiome seems to keep things pretty well in check and functioning properly. People without it get into trouble.

Lisa Deuel 3:26
Exactly. We have data to suggest, again, not just in Parkinson's, but in other diseases as well, that there may be changes to the microbiome. Where it gets really tricky is trying to figure out, you know, are those changes happening at the beginning, and therefore causing the disease, or are these changes that we see as a result of the disease? And we don't necessarily know how these changes impact the start of a disease like Parkinson's disease, mostly because we have a lot of data to suggest that the changes going on from a molecular level in Parkinson's disease are happening long before a person actually develops the classic symptoms that we think of, like tremor and walking trouble and slowness of movement. So, it's hard to know exactly how these changes to the microbiome actually cause or affect the disease process.

We just know when we take a group of people with Parkinson's, for example, and we look at the pattern of the bacteria that we see in their gastrointestinal tract, that it looks different than people who don't have Parkinson's disease. Again, it's not just one specific bacteria that is or isn't there; it's more so the pattern, and that the pattern in Parkinson's disease tends to be more inflammatory. So, these types of bacteria are more likely to cause inflammation or irritation of the gastrointestinal tract, and so when we start to notice these patterns, and we see more susceptibility to inflammation, there are theories that this then makes the gut leakier. Perhaps that's an entryway for toxins, potentially toxins from the environment, or things that we ingest to enter the body.

Dan Keller 5:28
There seems to be at least two hypotheses: gut-first or brain-first. The things you see in the gut are a result of what was going on in the brain, or things that precede symptoms may start in the gut and move up to the brain. Where does that stand?

Lisa Deuel 5:48
I think that's exactly right, that there's these two ideas going on, and there's data out there that supports either of them. And it may be the case that we're lumping a lot of people into one category called Parkinson's disease, but maybe there are actually different processes, different disorders that end up with the same symptoms, and we're limited by our ability to diagnose people based on what we see clinically. We can't really categorize people by what's going on inside the body, and so I think that's where it stands, is there's limitations based on how we're able to obtain data and characterize people.

But there is a lot of interest in looking at the microbiome, looking at people who, let's say, have a family history of Parkinson's, so may be more likely to develop symptoms in the future, and really try to categorize these things as early as possible, so you might be able to tease out the difference: is it coming more from the gut or is it coming from the brain, or are there two separate, let's say, populations of people? So, maybe both theories are correct, and again, that's where there's a lot of interesting research going on to try to help answer these questions, and really find out, could any of this, whether it's the microbiome or other chemical changes in the body, could those be considered a biomarker that if we look at that early in people who don't have Parkinson's disease, it might predict whether or not they're going to develop symptoms?

Dan Keller 7:31
Can changes in the gut affect the symptoms or progression of the disease?

Lisa Deuel 7:37
Yeah, it seems like modifying the microbiome can affect Parkinson's symptoms. I think whether or not that's changing the disease process itself or changing how your body can, let's say, absorb and utilize medications is kind of a question up in the air. What I mean by that is the way that people have looked at this so far is to, let's say, in some current research, give people a probiotic. And the idea with a probiotic is that we're helping to build up more of the good, healthy, less inflammatory microbiome, and then these small studies, so far, have shown that that can be really effective in improving Parkinson's symptoms.

But I think a question that still remains is, are we actually changing what's going on with the Parkinson's as a whole, or are we changing the way that the gastrointestinal tract is able to kind of break down and absorb medications and thereby just making the medications more accessible, so somebody feels better? I will say, too, there's plenty of data out there suggesting that something like a probiotic can help with the gastrointestinal symptoms—so not the motor symptoms necessarily, but people dealing with constipation, which is a very common issue in Parkinson's, that that can actually respond to a probiotic as well. So, there's a lot of different ways that somebody with Parkinson's could benefit from, let's say, a probiotic to change the microbiome.

Dan Keller 9:14
I always think that if our microbiome changes, whether we've had a powerful antibiotic or some other condition causes it, maybe we should have banked stool samples when you were healthy, sort of like doing cord blood transplants.

Lisa Deuel 9:32
Sure, there's interesting research, and maybe a little challenging to talk about, but there's some interesting research starting with animal models, with mice models, where they can effectively transplant the microbiome from, let's say, a healthy mouse into a Parkinson's mouse model, and you can see a reduction in Parkinson's symptoms. And they do the opposite as well, where they take a mouse with a normal, healthy gut microbiome, and then they implant the microbiome from a Parkinson's mouse, and again, you can induce more Parkinson's symptoms in mice models. So the idea there, in practice, it's challenging, but this is actually a process that's done that's called fecal transplant. It is done more for people with severe diarrheal illnesses, where you're trying to clear out that bad gut microbiome for somebody that's having really severe gastrointestinal symptoms, but it is effective as a treatment.

There have been small studies that have shown if you do a microbiome transplant through a fecal transplant in humans, you could also improve symptoms as well. If you really get into the weeds of this, it's perhaps a little bit not palatable in a certain way, but they can transplant the healthy microbiome. So, some people would find that type of treatment to be a little bit questionable, but there have been small studies that suggest it works. The trick again with Parkinson's is, you know, this is not something that we're doing ahead of time, and most people who develop Parkinson's don't realize early on that that's something they're going to develop in the future. So, unless we could come up with some sort of marker that would indicate somebody's risk for developing Parkinson's, you would just have no idea that you needed to do this in the future.

Dan Keller 11:30
Gastrointestinal issues can be pretty common in people with Parkinson's: constipation, gastroparesis, which is slowed emptying of the stomach, and they can be frustrating to people, and also embarrassing to talk about, even with their physician. So, how common are these kinds of symptoms in people with Parkinson's?

Lisa Deuel 11:51
You're right, they're very common. Some studies show up to 80% of people with Parkinson's have constipation; that's what we tend to talk about the most. But you're right, there are other symptoms related to the gastrointestinal tract that can be present as well. It is really hard, right? These are things that we're not used to talking about frequently. I'll say in my office, that's something I talk about a lot. So, I've gotten a little bit more comfortable over time, and a lot of these, you know, what we refer to as non-motor symptoms—it's important for us, as the clinicians, to ask about them, because people don't necessarily realize that it comes along with Parkinson's. Again, we often think about the motor symptoms, and people aren't aware of just how common some of these non-motor symptoms, like constipation, can be.

So, my approach is just be open about it and ask questions to try to get to the bottom of what's going on. You know, at times it makes people feel a little uncomfortable, but ultimately, you know, we're all just trying to work together to help somebody feel better. And oftentimes, I'll say constipation is a great example of that, that sometimes these non-motor symptoms can be worse than some of the motor symptoms that we're used to dealing with. So, I've learned over the years that if I don't ask, if we don't have some way of capturing the information, either through our intake forms or by asking directly, that this is a symptom that somebody might not offer up because of embarrassment or just not realizing that it's related. But it's really important because it's not something that you're necessarily seeing a gastroenterologist for. Most people don't see a gastroenterologist routinely for mild constipation, so I find in my clinic it's one of the common things that we're managing and treating.

Dan Keller 13:50
Constipation would be considered a non-motor symptom, but in essence, doesn't it have to do with the motility of the gut, the muscles, the smooth muscle of the gut propelling things through it?

Lisa Deuel 14:03
Sure, that's a good point. The term motor symptom we generally refer to as more of the mobility, the tremor, things that to some degree are visible as affecting the muscles, but it's a good point. You have a whole separate nervous system within the gut. The reason I think it's worth differentiating, though, is often the treatments are very different. So, when we give medications to treat the common motor symptoms of Parkinson's, we're thinking about stiffness and slowness and tremor. We have a number of different medications we can use to help with those symptoms. Those medications that help with the typical Parkinson's symptoms often don't help these other non-motor symptoms, and in fact, sometimes the medicines we use to treat Parkinson's can actually make non-motor symptoms worse, like constipation. So, there's a number of Parkinson's medicines that we would give to, say, help with a tremor, and we actually have to counsel people to watch out for worsening of their gastrointestinal issues.

Dan Keller 15:12
What are some practical steps that people can take to improve their gut health?

Lisa Deuel 15:19
We have a lot of different things we recommend, and generally starting from more conservative to more advanced, depending on the situation. In general, though, I would tell everybody, I guess, with Parkinson's or without Parkinson's, is to stay hydrated, drink plenty of water. I tell my patients, obviously, depending on the situation, even up to one or two liters of water a day, and that can really help with a lot of things, but constipation, too. And then eating a diet that's high in fiber, so trying to get in as much fiber as you can, can help with some of these symptoms that we're talking about.

We talked about probiotics a little bit, and how that can be a positive impact on the microbiome, and introduce more of those good, less inflammatory bacteria. So that's an option, especially as I said, there are small studies that say it can be helpful for constipation as well, and the other things we always think about is just eating healthy in general. Being more active can also be helpful here, and vice versa. The better your gut health, the better you're feeling. The better you're absorbing your medications, the more easy it is to be active as well.

Dan Keller 16:41
Since we're talking about the gut microbiome, it seems there's a lot of commercial companies now offering home gut microbiome tests, but there seems to be no standardization, no regulation, not even proficiency testing for the different companies offering different collection methods, different processing methods. Some are looking for DNA to know what's in the gut, some are looking for RNA or even metabolites of gut microbes. Then you've got the issue of sending in the sample through the mail: time, temperature, or bacteria dying off or proliferating. So, is there any utility to these kinds of tests, are they worth doing, and then if so, what do you do with the results once you have them?

Lisa Deuel 17:25
That's exactly the big question, is what do you do with the results, and I think to take a step back, it just reiterates what we've been talking about, which is, you know, we know the microbiome and Parkinson's, and again in other neurologic and non-neurologic disorders too. We know the microbiome is different, but we don't know exactly how it's different or how it gets that way, and so I worry about right now being in the midst of this research and not having really good conclusions about what the data means, is that you spend a lot of money on some of these tests. And it is really interesting, the different things that they can test nowadays, but it's hard to really know what to do with that data, so I generally tell people right now to not spend the money and maybe invest more, like we talked about, in just overall better diet and gut health by way of diet and exercise and hydration, rather than spending a lot of money for something we don't know how to interpret.

Dan Keller 18:28
As research in this area marches on, what gives you the most hope about the future of gut health knowledge about it as it relates to Parkinson's?

Lisa Deuel 18:39
I think the reason that it interests me so much is because we're still trying to answer this question, of course, of what causes Parkinson's disease. Is it truly one disease, or is it multiple different causes of different diseases that ultimately look the same downstream? And we've heard before about this idea that genetics plays a role, but the environment plays a role. This is a way to kind of tie those things together in a sense, and I think that's why I find it fascinating is thinking about how the environment might impact your gut microbiome, and then have a downstream effect.

And then if we can come up with a pattern to use the microbiome as a biomarker for people being at risk for the disease, that's something you can look for; you can look for that pattern in people without Parkinson's to really quantify their risk of developing it. So, I think it's interesting to me to fold in that there's some evidence if you adjust the microbiome, whether it's through diet or these different experimental capacities that I talked about, you could make somebody feel better in the moment, but also if you look more into the microbiome, you might be able to predict who's going to develop Parkinson's down the line, so that you can intervene a lot earlier.

Dan Keller 20:07
Very good, I appreciate it. If you'd like to know more about the gut microbiome in relation to Parkinson's disease, you can search for "microbiome" on our website at parkinson.org. You'll find several blog posts, news articles, and a past podcast. As always, our PD information specialists can answer questions and provide information in English or Spanish about this topic or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. If you'd like to leave feedback on this episode or to let us know what other topics you'd like us to cover, visit Parkinson.org/Feedback. Be sure to subscribe and rate us on Apple Podcasts or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every month. Till then, for more information and resources, visit Parkinson.org or call our toll-free helpline at 1-800-4PD-INFO. That's 1-800-473-4636. Thank you for listening. 

Lisa Deuel, MD is a Neurologist and Movement Disorder specialist at the University of Vermont Health Network in Burlington, VT. She completed her Neurology residency at Albany Medical Center in Albany, NY followed by a two-year Movement Disorder fellowship at the University of Colorado in Aurora, CO. 

In her current role, she provides comprehensive, patient-centered care for individuals with PD and other movement disorders. She has particular interest in gastrointestinal symptoms associated with PD, especially the relationship between gut health, environmental exposures, and inflammation on symptoms and disease progression.