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. The Parkinson's Foundation strives to support the 60,000 people who are newly diagnosed each year in the United States.

Through a survey shared with the Parkinson's Foundation community, we found that close to 50% of people with Parkinson's and their care partners leave the doctor's office following a diagnosis without educational resources or information on what the future holds. To arm people who are newly diagnosed with the knowledge, tools, and resources they need as they begin their own personal journey with the disease, the Parkinson's Foundation launched the newly diagnosed Building a Better Life with Parkinson's Disease initiative in October 2019. This is the first national initiative ever launched specifically targeting the needs and priorities for people newly diagnosed with PD.

Visit the Foundation's website at parkinson.org/newlydiagnosed, where you can take time to understand how Parkinson's can impact you physically and how it can impact your mood and emotions. The website offers many tools and resources to support you on your journey, and also outlines five first steps identified by other people with PD that we recommend to begin to live well with PD.

For today's episode, I spoke with Anna Hedges, a Parkinson's Foundation helpline specialist, who has fielded calls from people with PD—many of them first-time callers—after receiving a new diagnosis. She describes some of the many questions people have asked and the kinds of resources the foundation can provide. Gretchen Rosswurm, now the chair of the People with Parkinson's Council at the foundation, describes her path to getting a new Parkinson's diagnosis, how she came to terms with it, and how she found much needed and comforting resources through the Foundation.

Gretchen, we hear that for some people, a Parkinson's diagnosis is actually a relief. It's an explanation for what they've been experiencing but have unexplained symptoms. Other people might be stunned by it; they struggle with what the future may look like. So, can you tell us what your experience was when you received a diagnosis?

Gretchen Rosswurm 3:03

Well, I was very surprised, but I think that was more of a desire to not have Parkinson's. I was having a couple of years of different symptoms that we couldn't—as a doctor or as a family—couldn't figure out, including depression and a very small tremor in my foot. And I, as I said, ignored them for quite a while, and then eventually went to the doctor. So it was probably almost two years before I went to the doctor, and he sent me to the neurologist, and of course I got the diagnosis at that time.

And I was surprised, and I really should not have been because of what had been going on with me, and also my family. I know of at least four people in my kind of bigger family that have Parkinson's or had Parkinson's. It was somewhat of a relief to know, but still devastating in its own way when you've gone through that with others—with my sister, especially, having Parkinson's at a very young age. I had seen kind of how it goes, and it was terrifying, and so I turned my head the other way.

Dan Keller 4:13

It sounds like you had a fairly straight path, though, to getting a diagnosis from your primary care to a neurologist, but some people go through multiple doctors, I take it, before they get a definitive diagnosis.

Gretchen Rosswurm 4:27

My example is fairly unusual, I think, based on the number of people I've talked to who had all kinds of different and strange diagnoses—most of them being on the younger side. And if you don't see a neurologist, or especially a movement disorder specialist, you might not get a true diagnosis for a number of years.

Dan Keller 4:50

And you then joined the People with Parkinson's Council of the Parkinson's Foundation, is that right?

Gretchen Rosswurm 4:57

I did. I decided once I accepted the diagnosis—and everyone goes through a period of accepting, which can be immediately or over time, which is more my situation—but once I accepted the diagnosis, I started looking for things I could do to make a difference, in part because of the situation with my family and so many people having Parkinson's within my family, but also a desire to make a difference for the community.

So I looked at the Parkinson's Foundation and other Parkinson's-based foundations, and I selected the Parkinson's Foundation as the one that I wanted to be involved with because I called the helpline after my diagnosis, and I saw the wealth of materials and support that the foundation provides. And it gave me hope.

And so then I started to understand more about how the foundation supports the community, and one of those areas is through the People with Parkinson's Advisory Council. And I applied and was selected, and so that has been probably the biggest part of what I want to do in the Parkinson's community—to help others and to help guide and steer the strategy of connection with people with Parkinson's and their families and caregivers.

Dan Keller 6:12

You said the foundation has a wealth of material. Can it be overwhelming? Is it organized well enough so that someone who's newly diagnosed can come in and see very targeted, useful information?

Gretchen Rosswurm 6:25

It's very helpful. I remember the first time I visited the foundation website, I was looking for information specifically about depression, and I found it right away. I actually ordered several books from the foundation, which were sent to me, and I can remember opening them up and reading them, and what a difference that made to me because I didn't want to talk to other people about what was going on yet. Only my husband knew of my diagnosis, but when I connected with the Parkinson's Foundation, I started to feel like I could go beyond me. I could start to think about the bigger picture for my family, and, you know, in this case, I was worried about my mental health as well.

Dan Keller 7:09

Let me ask Anna, since you've been on the helpline for 10 years, what are some of the most commonly asked questions, and what kind of reactions do you get from callers who have been recently diagnosed?

Anna Hedges 7:22

For many callers, there's a sense of relief to just talk to someone who they can ask questions of that knows what they're talking about. So common questions include: is there a cure, is there a way to slow or stop progression, what is the best diet, what's the best exercise? It's really interesting because we did a survey in 2019 and we found that nearly 50% of people diagnosed leave the doctor's office without any educational information. So, the helpline and our newly diagnosed kit really helps fill that gap.

Dan Keller 8:03

There was nothing really before? Doctors didn't—would they have a brochure, or how did they deal with it?

Anna Hedges 8:10

At our Centers of Excellence, hopefully, we have a lot of materials that we spread to them, and they're spreading out, but a lot of people go to just a general neurologist, or maybe even just their primary care to get a diagnosis. And unfortunately, a lot of those doctors don't know about the great services that we have, and so they don't provide any information. I think a lot of the doctors just assume, "Well, they'll go on the internet and figure it out for themselves," and that's not really fair.

Dan Keller 8:43

And oftentimes they advise not going to the internet in general because you can get good information, questionable information, and probably bad information, too, without some guidance. What's in this kit for newly diagnosed people?

Anna Hedges 9:00

Well, it's a folder, and it has actionable steps listed in the folder. It also has a letter from our CEO and a member of our Parkinson's Council that sort of introduces them to the foundation and what materials we offer.

Dan Keller 9:19

Gretchen, did you have other questions when you first got your diagnosis? You had mentioned mental health and depression was one aspect. Was there something or some things else that you were interested in?

Gretchen Rosswurm 9:34

There were a lot of questions running through my mind. What I found is once I had the diagnosis, I wanted to understand more about the disease. One of the things I remember when I first started visiting the Parkinson's Foundation website, and after I had been diagnosed, I would read these feature stories about individuals and families who are living with Parkinson's. And it made me feel a relief there because I was connecting with people who felt like my people—they were going through some of the same things I had gone through, they were going through things that hadn't happened yet to me but could very well happen, and I just started to not feel alone. I started to feel like I had a community with me, and that's the way it's gone ever since. I mean, the foundation is a terrific way to connect with other people who are walking your walk, especially for caregivers, as well as people with Parkinson's. It's been a lifeline, I think, for many, many, many people.

Dan Keller 10:36

Did you find either a self-imposed stigma or feeling it from other people or perceiving it, even if it wasn't there?

Gretchen Rosswurm 10:45

I feel that some people are scared of Parkinson's, and that sometimes they almost think it's contagious. So, there is a need for people to understand more about what it is and what it isn't. I think that when I was diagnosed, people thought I would immediately quit work, you know? And it's been almost three years ago, and I'm still working, and I'm still extremely active and healthy, and that's part of the message that the foundation helps to get out—is this is not the end, but in many ways it's a new beginning.

Dan Keller 11:18

Anna, what do you think the helpline offers specifically to people who are newly diagnosed?

Anna Hedges 11:24

Well, I think it's a chance for people to talk freely and not be judged, and it's a place to get emotional support from someone who's not as emotionally intertwined as a family member might be. It's a first step to getting information about what to expect. Some people, you know, that are newly diagnosed may not feel comfortable going to an in-person support group, especially during COVID-19. So the helpline is a space to talk to someone who has an inkling of what they're going through.

And, you know, to Gretchen's point, if people don't understand or know that PD could affect their mood, we can be a sounding board, and we offer specialized materials about mental health and referrals to mental health specialists.

Dan Keller 12:15

I suppose it's a way to sort of ease into the acceptance. You're not in person; you're sort of separated from the person you're talking to. It's a little bit anonymous until you get comfortable with the whole thing, and then maybe go to in-person support groups when they're allowed outside of the pandemic.

Anna Hedges 12:35

Parkinson's creates a lot of activity in your body and brain that has to be managed in some way, and mindfulness is a way to do that. The Parkinson's Foundation offers Mindfulness Mondays, and it's a great way for all of us to connect with an opportunity to slow down our thoughts, calm down for those of us who may have anxiety. Mindfulness Monday—I may be sitting at home, but I'm connecting with a whole bunch of other people around the world, frankly, who are working together to find some mindfulness and relaxation as a large group of people with Parkinson's or caregivers.

Dan Keller 13:15

I think we'll also have a podcast coming up in a month or so, which talks about tai chi, which seems to be both a physical and meditative kind of activity.

Gretchen Rosswurm 13:28

I love tai chi, that's really been a good help for me.

Dan Keller 13:32

Now, there is also on the Parkinson's website available PD Conversations, which is people writing about their experiences, and it sort of provides peer-to-peer support. Is it helpful to see what other people have gone through or are thinking of, even at whatever stage they're at in their Parkinson's?

Gretchen Rosswurm 13:57

I have found PD Conversations to be very interesting and also impactful because, as we said, everyone's walking down the walk of Parkinson's, but they all have a little bit different walk that we're taking. We may have different symptoms or different issues, we may have emotional or family challenges, whatever it might be, and you can go into PD Conversations and very independently—not anyone knowing who you are—you can raise that issue or question and get back very thoughtful and different kind of suggestions and ideas from other people. I found it very helpful.

Dan Keller 14:35

We are sort of coming to the end here, but do either or both of you have anything you want to add—anything important we've missed, or things just based on your own experiences?

Anna Hedges 14:47

One thing I always tell newly diagnosed patients is that we did a study a while back and found that people that exercise 2.5 hours a week have a slower decline in quality of life than people that don't exercise, so we really encourage people to exercise. It's a great way to manage your mood, and a great way to, you know, as some researchers think, maybe be able to slow down the progression.

Dan Keller 15:16

I actually have a friend who was diagnosed. He was getting stiffness in his arms; he eventually, not too long after, went on medication. He's now doing the speed bag an hour a day, and saying his previously stiff arm is up to the speed of his other side. So he really got religion. He also has a boxing instructor once a week, and he's in good shape.

Anna Hedges 15:40

That's great.

Dan Keller 15:41

Well, I really appreciate it. This was very informative.

The Parkinson's Foundation aims to be the go-to resource for people when they receive a Parkinson's diagnosis. The newly diagnosed Building a Better Life with Parkinson's Disease campaign aims to arm people with the knowledge, tools, and resources they need as they begin their own personal journey with the disease. Visit the new section of our website geared towards those who have just received a Parkinson's diagnosis: parkinson.org/newlydiagnosed. There you can join PD Conversations, our new online discussion forum for all people with Parkinson's, where you can connect with the Foundation's information specialists and with others living with the disease.

As always, the Foundation's PD information specialists are available on the helpline to answer your questions about being newly diagnosed or about the disease itself. You can also call to order your newly diagnosed kit—a set of understandable, digestible, and actionable educational resources to help you begin your journey with Parkinson's. Call toll-free at 1-800-4PD-INFO, that's 1-800-473-4636.

If you have any questions about the topics discussed today, or if you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe, 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 will be re-releasing podcasts most pertinent to those who are newly diagnosed over the course of the next year as part of the newly diagnosed Building a Better Life with Parkinson's Disease campaign. Thank you for listening.

Gretchen Rosswurm was diagnosed with Parkinson’s Disease in 2017 at the age of 52. Her commitment to the Parkinson’s community springs from a deep history of PD in her family while at the same time believing that what seems an impossible challenge creates opportunities for connection, healing and hope. Professionally, Gretchen’s work experience centers around corporate philanthropy. She also blogs and writes short fiction. She lives with her family in Dallas. Gretchen was selected to join the Parkinson’s Foundation People with Parkinson’s Council in 2018 and was elected as Chair in 2020 after serving as vice chair.

Anna Hedges, MSW is a Parkinson's information specialist with the Parkinson's Foundation Helpline. She has a Master of Social work from Washington University in St. Louis and has been working on the Parkinson's Helpline for over 10 years. She enjoys interacting with patients and families and witnessing their amazing resiliency.

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.”