Dan Keller 0:00

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.

Just as Parkinson's disease can affect movement throughout the body, it can also affect the mouth, face, and throat muscles that produce speech. Since speech is so central to our interactions with other people, voice problems can severely limit social interactions, opportunities for work, or just getting by day-to-day. In addition, facial expression and gestures help convey our emotions and intent—all part of communication and all impacted by PD. Darla Freeman, a speech-language pathologist at the Florida Center for Voice and Swallowing, discusses voice problems and solutions to alleviate these difficulties, as well as some other techniques to facilitate communication. When I spoke with her, she started off by explaining the physical origin of these problems.

Darla Freeman 1:38

The reason why patients with Parkinson's have difficulty with voice and communication is because an overall decline of the movement of muscles. Oftentimes, you'll hear the word "hypo" coming before we discuss voice or swallowing or communication. In general, your voice works off of three subsystems. Those subsystems include respiratory support, phonatory support, and resonating support. So with Parkinson's patients, the respiratory drive is usually decreased, and that impacts that fuel that needs to be given to the vocal cords. So as that air moves up to the vocal cords, the vocal cords sometimes just can't handle the respiratory support that it doesn't have at this point. Oftentimes the vocal cords may not close completely. That's called being spindled, or you have bowed vocal cords, and so in that difficulty, patients have a hard time getting their voices loud. So often, what you'll hear is the voice can't be heard, and it's very weakened.

Dan Keller 2:48

How does this lead to communication difficulties? People communicate with their voice, but a lot more of expression and gesture and things like that—are they also limited by not being able to do these other motor things that would be cues to what they're saying?

Darla Freeman 3:03

Oh yes, most definitely. So not only can they not be heard, maybe in a communication situation, such as being at a restaurant, being in a noisy situation, sometimes even one-on-one can be challenging. We have something called hypomemia, and that is decreased facial expressions, and facial expressions give us so much. It can tell us whether we're happy, whether we're sad, whether we're disappointed, and so that can change the interpretation of what someone's trying to communicate. Another thing that may change and be a challenge is the intonational patterns in our voice. So when someone is letting you know they're happy or they're sad, those can be missing because the contours of intonation decline as well with Parkinson's.

Dan Keller 3:52

Is there a typical stage at which these problems arise?

Darla Freeman 3:58

Well, typically we'll see this happening towards the end of the mid-stage, on into the later stages of Parkinson's. But you don't want to discount that that couldn't happen at the beginning and the early stages and the beginning of mid-stages, because it can.

Dan Keller 4:12

What are some of the strategies to help people who have voice problems?

Darla Freeman 4:17

Okay, so we'll first address those as strategies. Strategies could be as simple as reducing noise—background noise—making sure that you're looking directly at the person face-to-face, sometimes shortening your message so that you can be clear and concise. Things like over-exaggerating your speech so that you're moving your articulators more precise so it can be understood, and also speaking loudly. Those would be specific strategies, very low-level ways that you can improve your communication.

Dan Keller 4:51

It seems that people would have to be sort of clued into these are possible strategies. Do they really need training in the strategy? Or once they are alerted to them, they can just do them?

Darla Freeman 5:03

Once they're alerted, they can just do them, although we always recommend for patients to be seen by speech pathologists so that we can monitor those types of behaviors, because that is a behavioral approach to improvement. And as well, educating and working with care partners is also crucial. So our goal is always to train the patient to be functional and independent within their community and at home. So that's our anticipation. Although we would want them to be seen in therapy.

Dan Keller 5:32

I assume you evaluate them overall—swallowing and language and speech and things like that?

Darla Freeman 5:38

Most definitely, most definitely.

Dan Keller 5:41

What are some of the voice training techniques or programs?

Darla Freeman 5:45

Well, we have some wonderful programs most people have heard of. Think loud, speak loud. That's the Lee Silverman Voice Treatment that originated back in 1987. A wonderful program, certifiable, meaning that the speech pathologists are trained. They receive a certificate, and folks can find that information on LSVT Global. You can actually locate a speech pathologist in your area to receive those services. And the second upcoming program is called Speak Out, which was developed out of Richland, Texas. And that program also works to increase the loudness of the patient's voice, but also what we enjoy is it adds in a cognitive component. We found, also in research, that these types of therapies can help promote swallowing simply because it's increasing the respiratory drive, increasing how those vocal cords adduct or close and help protect the system when patients are swallowing.

Dan Keller 6:47

How common are these problems? Do they happen to everybody?

Darla Freeman 6:50

They don't happen to everyone. But the percentage is quite high. We'd estimate over 80% of patients are going to have some type of communication difficulty or challenge along the process of the disease.

Dan Keller 7:03

Does it get worse? Or once they learn techniques, they can carry them for several years?

Darla Freeman 7:08

It really depends on the patient, obviously, but if you have an onset of mild cognitive impairment, that may impact the type of strategy that you have been using. So at that time, you'd want to see a speech pathologist. If you notice that the techniques that you have been using, or maybe the training that you had, is not as quite effective any longer, you might need a "reboot," as we call it. They'll come back in for a booster of, say, LSVT, or a booster of Speak Out. A way of continuing to have good voice production is joining a group. And so we have groups called The Loud Crowd; that stems from the Speak Out program. We have the—I think it's LOUD for Life; it's a group through LSVT that's very new. And so those types of programs can really help you to maintain those skills.

Dan Keller 8:02

Do things like just exercise and fitness and even music and dance, or especially singing help?

Darla Freeman 8:10

Oh, most definitely. We have a lot of groups that are formed. One known widely here in the United States is the Tremble Clefs choir. Music provides so many things: just the community bond, it takes away from social isolation, and as well, it increases and helps stimulate memory. So you're just getting so many wonderful benefits out of singing, not just to improve the voice and speech production, but as I've mentioned already, many things that are helping with communication.

Dan Keller 8:42

What are some self-advocacy strategies or techniques?

Darla Freeman 8:47

Self-advocacy means educating people. So as a patient with Parkinson's or even their care partners, if you know that you're going to be put in a situation where communication may be challenging, letting others know: "I have Parkinson's, and sometimes you may not be able to hear me, but I will do my best to speak up loud. I'll do my best to give you great eye contact." Just letting people know so that you're avoiding some of those questions that we know we don't like, which is, "I can't hear you. Can you tell me that again?" So I think we would be very surprised how empathetic or open people are when they already know what they're dealing with.

Dan Keller 9:30

I find that with all sorts of disabilities, people sort of rise to the occasion—not the person with the disability, but the ones who they're with or are helping them or whatever.

Dan Keller 9:40

What have we missed, or is important to add, or a good take-home message for people with potential voice problems?

Darla Freeman 9:47

The take-home message from a speech pathologist's point of view would be early intervention. You don't have to present with a communication problem to learn about communication or to benefit from it. We know that in our population, there are a lot of people that have voice and communication issues, yet they do not seek treatment. We're finding that approximately only 10% of people with Parkinson's at the early stages will be seen by speech pathology. So I advocate for seeing a speech pathologist early on, so that we can educate you. We can talk to you about the options that are available, so that when that time comes, you're able to make the best decision.

Dan Keller 10:39

Is there more fallout if people just don't get help? I mean, things like social isolation in various diseases leads to cognitive decline. So it sounds like improving your voice can improve lots of aspects of the disease.

Darla Freeman 10:56

Oh, most definitely, most definitely. So it could lead into you becoming more active. Patients that I work with that have been doing therapy since the onset, their schedules are so busy—I don't know how they fit in everything within a day—but it brings about so much confidence. They're the biggest educators out there and advocators. So again, beginning early definitely has its benefits.

Dan Keller 11:22

Very good. Thanks a lot. To learn more about overcoming voice challenges, make sure to check out the newly updated speech and swallowing book authored by Angela Roberts. Just go to parkinson.org/store and you'll find the publication, along with our extended library of resources. You can also listen to Dr. Roberts' presentation on communication and PD from the 2018 Caregiver Summit at parkinson.org/summit. You can learn more about how speech-language pathologists can help on our blog post titled "The Expert Care Experience: Speech, Swallowing and Parkinson's," available at parkinson.org/slpblog. There are also a couple of Expert Briefings related to the subject. One is titled "Improving Communication in Parkinson's Disease: One Voice, Many Listeners," and the other is called "What's Missing? Communication and the PD Partnership," which includes information on aspects of nonverbal communication. Just go to parkinson.org/eb and click on past webinars.

As always, you can contact our PD information specialists on our helpline at 1-800-4PD-INFO. They can help you locate a speech-language pathologist in your area, and they can answer questions and provide information about this topic or anything else having to do with Parkinson's. 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. 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. Thank you for listening.

Darla Freeman is a licensed and certified Speech-Language Pathologist at the Florida Center for Voice and Swallowing where she specializes in the evaluation and treatment of voice and swallowing disorders. She received her B.A. from the University of Pittsburgh and M.A. in Speech-Language Pathology from the Ohio State University. Ms. Freeman is Lee Silverman Voice Therapy® (LSVT-LOUD) certified, trained in the use of the Speechvive device and trained in the Speak Out® program for Parkinson’s. From 2001-2016 she served as a Clinical Instructor in the Department of Communication Sciences and Disorders at the University of South Florida (USF). While at USF she initiated collaboration with the Movement Disorders Center for Excellence by providing speech, voice and swallowing screenings, training and education for patients with Parkinson’s disease and their caregivers. Ms. Freeman is a member of the American Speech-Language-Hearing Association (ASHA) including their special interest division group for voice and airway disorders. Darla serves on the executive board for the Tampa Bay Medical Speech Pathology Association and is founder (2016) of the Tremble Clefs choir of Tampa, FL. Accepted by Northwestern University Ms. Freeman is currently seeking her clinical doctorate in speech-language pathology.

Dan Keller 0:00
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. Good oral health care is important for everyone, but it's especially critical for people with Parkinson's disease. Symptoms of the disease, such as drooling and swallowing difficulties, can affect quality of life, and oral bacteria can even cause harmful infections such as pneumonia if inhaled into the lungs due to choking. To avoid these harmful scenarios, people with PD need to practice good oral health care at home and should have frequent visits with their dentists and other oral health care professionals who should be aware of the PD. Cameron Jeter of the Dental School at the University of Texas Health Science Center in Houston explains some of the oral problems that people with PD may experience, and she offers advice on how to cope with them. She says awareness of the special need for attention to oral health should start at the time of diagnosis.

Cameron Jeter 1:42
Often, when a patient is newly diagnosed with Parkinson's disease, they do not receive information from their neurologist about oral health concerns that may occur later in the disease process. And I can summarize this for patients and their caregivers by the four deadly D's of oral health and Parkinson's disease. So those dreaded D's can include dry mouth, drooling, dysphagia, and deadly oral bacteria, and I can talk more about what each of those are.

Dan Keller 2:14
Okay, why don't we start at the top? What about dry mouth?

Cameron Jeter 2:18
So dry mouth, I think, is self-explanatory. Its fancy word is xerostomia. And dry mouth is just the subjective complaint that someone has a dry mouth. They wish they had more saliva. They often have to take small drinks of water. They can complain of a cracked tongue.

Dan Keller 2:35
Is it a component of the disease, or is it from the medications, or what leads to it?

Cameron Jeter 2:40
I would say both. So when we survey patients, prodromal patients, that means patients before their official diagnosis of Parkinson's disease, some will complain of xerostomia, and this prevalence increases as people progress in their disease, but so too, at the same time, many medications given to Parkinson's patients, and frankly any individual on medications, cause dry mouth. So it's kind of a two-pronged approach.

Dan Keller 3:10
So if they have dry mouth, how are they drooling? That seems like an overproduction of saliva.

Cameron Jeter 3:14
And that is the contradiction that led me to do a research study and to read the research literature about this very thing. I first want to differentiate between what drooling is and what sialorrhea is. Drooling, as we can see in our mind's eye, of course, is the picture of the unfortunate individual that has saliva pouring out of the corners of their mouth. They either have to have a regular handkerchief or spittle cup on hand. Sialorrhea, conversely, is pooling of saliva in the mouth that doesn't necessarily pour out of the mouth. So what I wanted to know is, is the drooling of Parkinson's disease the result of hypersalivation, the overproduction of saliva, or is it more likely linked to dysphagia, that third dreaded D, meaning that as a patient develops difficulty swallowing, they simply can't clear the saliva that exists in the mouth?

Dan Keller 4:14
And can you expand on the dysphagia part, the swallowing difficulties?

Cameron Jeter 4:19
All right, so dysphagia actually is the root cause of drooling. We found it's not that Parkinson's patients produce too much saliva. In fact, their salivary flow rate is reduced compared to healthy controls, but dysphagia is that culprit that begins usually six to 10 years after diagnosis of Parkinson's disease, and as speech pathologists will explain, there are four phases of swallowing. It's usually that second phase of oropharyngeal swallowing that is disordered in Parkinson's disease. That's just a fancy way of saying it's hard to get our tongue around the bolus of food to start sending it down our throat.

Dan Keller 5:00
Yeah. And finally, you yourself have a particular interest in oral bacteria, which some of them, I guess, you now call deadly oral bacteria.

Cameron Jeter 5:09
Right. And the reason for that is, again, in my research study with patients with Parkinson's disease, we took a very easy oral swab of the tongue and the cheek to identify in the lab what bacterial species were present there. And what we found is that Parkinson's disease patients not only have more bacteria in abundance but also a greater variety of species in their mouths than individuals without Parkinson's disease, and the reason that is concerning is we want them to have good oral health care to avoid having cavities, periodontal disease, etc. But the reason I call it deadly is that some of the patients who lived for probably 10 to 15 years after a diagnosis of Parkinson's disease had a preponderance of Streptococcus pneumoniae, and that's the very bacteria that can lead to aspiration pneumonia. You may know that aspiration pneumonia is the number one killer of patients with Parkinson's disease, and it occurs when bacteria from the mouth is swallowed into the lungs and causes infection rather than being swallowed into the stomach as it should be.

Dan Keller 6:21
Is it good advice to give to people with Parkinson's that they should be immunized against pneumococci, the strep pneumonia bacteria?

Cameron Jeter 6:32
That's possible. They could probably visit with their specific neurologist to see what's best for them as an individual. But in the case of this Streptococcus pneumoniae in their mouths, what's best is for them to have frequent visits to their dentist, rather than every six months as most of us go, perhaps even every four months, to make sure that they have routine cleanings in addition to thorough home oral hygiene.

Dan Keller 6:58
Had you compared people who were going to the dentist every four months to those who are on a more prolonged schedule to see if it actually had an effect?

Cameron Jeter 7:06
What's interesting is, in addition to taking these swabs of the oral bacteria, we asked these same patients, do you have a dentist? Do you regularly go to the dentist for cleanings? And many of them said yes, and they already were on a four-month routine cleaning schedule, and those that said they had difficulty doing their own tooth brushing asked for the help of a caregiver, and so that tells me that they were doing a good job. Another thing I should mention is we took a second oral swab from the teeth of patients with Parkinson's disease, and interestingly, there was no difference in the bacteria between the teeth of patients with Parkinson's compared to other healthy adults. And so what that told us is that Parkinson's patients are doing a good job of brushing their teeth. It's just that this bad bacteria is growing on the soft tissues, namely the tongue and the cheek.

Dan Keller 8:01
What should a person with Parkinson's request of their dentist? Or do the dentists know what to do with these people?

Cameron Jeter 8:08
Unfortunately, it's not standard training at most dental schools to have specific care for patients with Parkinson's disease. It's usually involved in a general training curriculum for geriatric dentistry, but a variety of different techniques can be suggested to the dentist, either by the caregiver, the patient, or the neurologist. Some of those include asking for morning appointment times, probably 30 minutes to an hour after the patient has taken their L-dopa medication so that they are least likely to have tremors while in the dental chair. Another one is to ask that they have more frequent appointments. Let's say they need to come in for a root canal or have a crown placed, rather than doing it in one visit over multiple hours, to come in over different shorter visits, and then also, if the patient has trouble with dysphagia, just keep that at the forefront of the conversation with the dental providers so they can be cognizant as they recline the patient in the chair that the swallowing reflex is not as robust and the saliva going down their throat can be a choking hazard.

Dan Keller 9:23
In a more general context for people who have swallowing difficulties, should they be seeing a speech-language pathologist or some other professional to maybe educate them or teach their body to swallow better?

Cameron Jeter 9:36
Certainly, there's no tried-and-true technique that can get rid of dysphagia entirely. Other recommendations that the speech pathologist will make mainly are just trying to mitigate the severity. It is important that each patient that has a concern see a speech pathologist because not every technique that the speech pathologist will recommend works for every patient. It's a very, very individualized behavioral recommendation.

Dan Keller 10:04
There are artificial saliva products. Does that help the patient with dry mouth only to feel better, or does it actually have any therapeutic effect, especially on oral bacteria?

Cameron Jeter 10:18
So actually, most of the products available are just trying to mitigate the symptoms. They don't try to reverse the process of the disease. What's important is when patients look for chewing gum or lozenges to help stimulate the saliva, first they should consider if they have any choking hazards, but then they should also be looking for sugar-free products. This is very important in how it impacts the oral bacteria. For example, fructose and glucose are sugars that are easily fermented or broken down by the oral bacteria, and they result in a very acidic oral environment in which bad bacteria can thrive. There are many products available over the counter that instead of these fructose or glucose sugars have xylitol. Xylitol actually does not ferment in the oral bacteria and is better for your oral health.

Dan Keller 11:16
Have we missed any important points for people with Parkinson's to consider or to help themselves?

Cameron Jeter 11:24
I think an important part is that often concerns with drooling and dysphagia, that swallowing difficulty, is first noticed by the loved one or the caregiver. Some patients will say to the provider, oh, I don't have any trouble with swallowing or with drooling, but they have just sat there and taken a few sips of water before being able to speak clearly or before being able to eat troublesome foods. And so if there is a certain number of foods that a patient begins to avoid, perhaps even without thinking about it, that's a good sign that it could be time to have a swallowing study, an actual quantitative way to study the physiology of the swallowing reflex, and from there, then it can be good timing to have referral to a speech pathologist. We want to not only improve the quality of life of individuals, but the time that they have to live well.

Dan Keller 12:22
Very good. Thanks. The Parkinson's Foundation website has a variety of information on oral health for people with PD. Just go to parkinson.org and search on dental. There's information on the basics of oral health in Parkinson's, the need for good oral health practices, tips for preventing dental problems, the fact sheet "Dental Health in Parkinson's," and more. You'll also find a link to an archived expert briefing webinar on swallowing and dental changes, including a set of slides describing the stages of the swallowing mechanism, treatments for swallowing difficulties, the oral effects of PD, and home care and treatment at parkinson.org/eb. Here you can also find a recent expert briefing on other non-motor symptoms of Parkinson's disease with Dr. Ronald Pfeiffer. For help with this issue or anything else having to do with Parkinson's, you can talk with our PD information specialists on our toll-free helpline at 1-800-4PD-INFO. And if you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. 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. 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.

Dr. Cameron Jeter is an associate professor at The University of Texas Health Science Center at Houston (UTHealth) School of Dentistry. After her father developed parkinsonism, Dr. Jeter witnessed the real impact that drooling and dysphagia have on a patient and his or her family. Determined to improve life for patients affected by these oral symptoms, Dr. Jeter focused her laboratory’s research to understand and address the unique oral health needs of neurodegenerative diseases. At the intersection of neurology and dentistry, Dr. Jeter specifically investigates drooling and dysphagia in Parkinson's disease, and considers how these symptoms affect oral bacteria composition and risk of aspiration pneumonia.

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. Most people with Parkinson's disease experience problems with getting a full night of restful sleep. Symptoms of the disease, such as tremor, medications used to treat symptoms, changes in the brain affecting the sleep-wake cycle, sleep environment, and poor bedtime habits can all affect the ability to fall asleep, stay asleep, or get back to sleep during the night. Fortunately, there are several approaches that people with Parkinson's and their health care providers can take to make sleep easier and more refreshing. I spoke with Anne-Louise LaFontaine, Director of the McGill University Movement Disorders Clinic in Montreal, Canada. She confirmed the majority of people with Parkinson's will experience some sort of sleep disturbance, and she offers tips.

Anne-Louise LaFontaine 1:37
The problem may be initiating their sleep. It could be maintaining their sleep, or it could be frequent awakenings for all kinds of reasons. So it is a complex problem, and I think you try to have to get to the root of what part of their sleep is affected to address it, and in probably the most, you know, precise way.

Dan Keller 1:59
How early might it become a problem, and could it even be an early sign?

Anne-Louise LaFontaine 2:05
So I would say that, in general, sleep troubles, although they probably more frequently occur as the disease progresses, so more and more people will have some sleep difficulty. But definitely, many individuals can, from the outset, have reported sleep difficulties. And there's one aspect of sleep that we do think may in fact occur up to years before the onset of diagnosis, and that's a very particular syndrome called REM behavior disorder. This particular sleep disturbance is where one would act out their dreams. So, for example, kicking or punching in their sleep. Usually, the patient themselves may not realize they've done it, but the spouse might. So this particular sleep disturbance may, in fact, precede even the diagnosis of Parkinson's. It could also occur later. So that's just one of the types of sleep troubles that people can have.

Dan Keller 3:05
What are some of the more common causes of sleep problems?

Anne-Louise LaFontaine 3:09
Well, I think you have to start looking at simple things like comfort. So, you know, is the bed the best quality? When was the last time they changed their mattress? So these would be problems that we might all face, but when you have Parkinson's and you may have some nighttime stiffness, you want to make sure that you have the optimal bed, mattress, the optimal sheets, the pillows. And for this, an occupational therapist may just review with you to make sure that you actually are at least sleeping on the best possible platform. So that's comfort. The next thing you want to know is how much is related to the Parkinson's, in the sense that have the medications worn off at night, and are you developing tremor or stiffness that could wake you? So a good history to understand perhaps some of the reasons, the factors that you might wake up. So there could be a specific way of addressing that by giving a dose of medication before bedtime. There is just the nature of Parkinson's. There may be sleep disturbance and inability to maintain that sleep, and that's part and parcel of the disease process. So that's a little bit trickier to manage, because we do like to avoid sedating medication, because there are side effects.

Dan Keller 4:28
Is there anything in the brain that's going on that regulates sleep that's amiss, either sleeping or arousal, wakefulness, or is it mostly some of these physical manifestations?

Anne-Louise LaFontaine 4:42
Well, so I think the answer is multifactorial. What causes the sleep trouble? So you're right, there is something within the brain as part of this degenerative process that affects the sleep-wake cycle. So the arousal mechanism has been hampered to a certain degree. So some patients may feel sleepy during the day and yet have trouble sleeping at night. So this is part and parcel. It's one of the core non-motor features of Parkinson's disease. Then you have to look at medications. Could there be medication side effects that cause either drowsiness or arousal, impairing sleep? And then we talked about, you know, could there be wearing off of medication, that the Parkinson's recurs and they're getting stiff, and so they might need adjustment of medication. So these are all the different causes. And something I'd like to point out again, if patients are getting up frequently and you explore further, perhaps it's because they have to go to the washroom many times at night. And then you might think, well, gee, maybe the root of the problem is actually urological, and should they be seen by a urological specialist? Perhaps they need therapy directed towards the prostate or bladder. The other thing to consider, as we see in the general population at a certain age, sleep apnea is not so uncommon. Again, sleep apnea, people develop episodes of, for lack of a better word, impaired oxygenation to the brain, and it may wake them. They may snore, they may have frequent arousal. So this is something that can be modified and treated. So if there's any question, you know, again, talking to the spouse, that there may be some disordered breathing overnight, it'd be worth seeing a sleep specialist, because that can be addressed, and you could have, you know, a much better feeling during the day if you've slept properly at night.

Dan Keller 6:45
So it sounds like there are certain things that are definitely related to the disease and treatment, whether medications are wearing off, and if people have stiffness or other symptoms at night. But it also sounds like people might just be a little more sensitive to the whole gamut of things that affect anybody. I mean, caffeine and not drinking a lot of water before you go to bed and things like that. Are they more sensitive, or do they just exacerbate the problem?

Anne-Louise LaFontaine 7:13
They may exacerbate the problem. So those are the good general principles that we all need to adhere to. You know, don't drink caffeine late in the day. Again, for people who urinate frequently, perhaps don't drink a huge volume just before bedtime. Exercise can be very helpful. It shouldn't be just before bedtime, and again, all the things that can activate us. So don't watch a scary movie. People will sometimes say, you know, in particular after the Stanley Cup hockey game series, their whole system is now on a heightened alert, and it's going to be harder to sleep. So if you can look at the environment and the ideal setting where they have a nice routine, but this is where, before bedtime, you should already be preparing for that psychologically. You should be in a more meditative state, relaxed state before you go to sleep. And the environment where you sleep should also be set up that way. It should be quiet and dark, and all those electronic devices need to be turned off and probably shouldn't even be in the bedroom. Something that is also really better understood is that anxiety and depression are often considered to be non-motor features that do accompany Parkinson's disease. So again, it's part of this process. So a lot of anxiety or symptoms of depression can impair sleep. You know, either you have the little hamster wheel running as you go to bed, and that's going to be much harder to settle yourself. And people with depression, one of the core features of depression is difficulty falling asleep. So it would be important again that the physician, again taking a good sleep history, explore these possibilities, because the treatment for your sleep would really depend on perhaps the treatment of the underlying anxiety or depression.

Dan Keller 9:12
What about setting a routine bedtime and waking time? Does that help?

Anne-Louise LaFontaine 9:16
It definitely helps. Now, suggesting it is a lot easier than putting it into action. But I think if people understand the principles behind the routine, and if they can at least aspire to do that, they'll probably be more successful than if they really don't have a routine. So routine time of going to bed, because your brain starts to work on an inner clock. So if it knows, yeah, this is the time you go to bed, you're more likely going to start to be prepared psychologically and relax before going to bed. The waking up, most people tend to wake up earlier than they'd like. The internal clock is pretty strong. But by the same token, you know, not oversleeping, because then it may also impair the time that you should start taking your medication, which will offset the rest of your day. So I think a routine, if one can do that, is probably good advice.

Dan Keller 10:11
Is napping good or bad, or does it depend?

Anne-Louise LaFontaine 10:15
It depends. Some people clearly have a need, and many patients will ask, you know, I do feel, is it okay if I nap? And we say, well, absolutely. If you're at a point where you've just lost your energy and you need to boost, those so-called power naps are actually quite effective. I think the rule of thumb is that nap time, you know, whether it's once or twice a day, is fine. You should avoid it maybe after 3 p.m. and probably no more than 20, maximum 30 minutes, because then you're going to get into a much deeper sleep cycle. It'll be harder to wake up. So shorter, those little cat naps or power naps are certainly fine, and try to avoid them after 3 p.m.

Dan Keller 11:01
How can people approach this problem? First, talk to their movement disorder specialist, or are there lots of other people involved, depending on the root cause?

Anne-Louise LaFontaine 11:12
Exactly. I think a good message is talk about it. Bring it up. You may not get to see your movement disorder specialist often enough, so you can certainly start with the family doctor, I think, who could still do a good screen for perhaps some treatable things, or going in the direction of the urologist, for example. If you happen to be in contact with one of the nurses in the clinic, that's another place where you can approach to see if it is a medication side effect. Could something be perhaps looked at closely? And of course, take the opportunity with your specialist, the movement disorder specialist, to say, hey, I am having trouble sleeping, or gee, I'm really sleepy during the day. That may be a clue that the problem is what's going on at night.

Dan Keller 11:58
Or with medication.

Anne-Louise LaFontaine 11:59
Or with the medication, absolutely. That could be a little adjustment that might help.

Dan Keller 12:03
Yeah. Is there anything important to add for what people with Parkinson's can do, or any other interesting aspects of the story?

Anne-Louise LaFontaine 12:13
Well, I'll probably, you know, end on a commonality. No matter what the symptom is, exercise seems to play a role, and it can even help sleep. So we certainly promote exercise for well-being at every stage for any part of, you know, the Parkinson's spectrum, because we know that it helps not just motor control and balance, but it may have an effect on your cognition. Hopefully, we're getting the evidence that it may even offer some protection, or at least delay the progression of Parkinson's, but a good exercise routine will also improve the quality of your sleep. So there's no downside to doing exercise, and I can't think of too many side effects.

Dan Keller 12:58
And that should be done early also in the day.

Anne-Louise LaFontaine 13:01
It should be done earlier in the day. Exactly, yeah. So usually morning or early afternoon is a good time to do your exercise.

Dan Keller 13:10
Good. Thanks. For an extensive list of resources about sleep, sleep problems, and a variety of tips, search the parkinson.org website on sleep, and check out the PD Library for a free copy of the publication Sleep: A Mind Guide to Parkinson's Disease. There you'll find suggestions about sleep habits and lifestyle, drug therapies, the kinds of health care providers to seek out, and more. Join the Parkinson's Foundation on January 15, 2019, from 1 to 2 p.m. Eastern Time for an expert briefing webinar on non-motor symptoms, including information on REM sleep behavior disorder with Dr. Ronald Pfeiffer from OHSU Parkinson Center. There's also a one-hour archived expert briefing from June 2017 by Dr. Alexander Videnovich of Massachusetts General Hospital. In it, he discusses the kinds of sleep disorders occurring in Parkinson's, reasons for them, assessment and diagnosis, and treatments. You can find these expert briefings at parkinson.org/eb. As always, PD information specialists are available on our toll-free helpline. They can answer questions and provide information about this topic or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. 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. 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. 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.

Dr. Lafontaine is a movement disorder specialist. She is the Director of the McGill Movement Disorder clinic which is a comprehensive interdisciplinary clinic and a recognized Center of Excellence of the Parkinson’s Foundation. She is a member of the medical advisory committee of the Parkinson Society Canada and an author of the Canadian Guidelines on the management of Parkinson's disease. She is actively involved in medical education and clinical research. She was involved in the WPC 2013 as a co-chair of the local organizing committee and is currently a co-chair of the Comprehensive Care committee for WPC 2019.

Dan Keller 0:09
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. Parkinson's disease is first addressed as a movement disorder, which it is, but our understanding of the condition and its treatment should not end there. Like any other chronic and progressive disease, it casts an extra burden on people with the disease and their care partners in terms of mood and coping. I asked Jessica Shurer, a licensed clinical social worker at the University of North Carolina in Chapel Hill, to describe the kinds of situations she sees, how people deal with them, and how health professionals can help. What do you find in terms of mood and coping?

Jessica Shurer 1:29
I think it can differ for everybody. Everyone is their unique person with Parkinson's. The way that I view it is we as a society, but also in the field of neurology, we call it a movement disorder, or we focus a lot on the motor symptoms when it comes to treatment and medications and exercise. But it affects more than the people living with it physically. It affects them emotionally, from a psychosocial standpoint, from a coping standpoint, because their roles, their relationships, their sense of self. So not only are there non-motor symptoms such as depression, anxiety, and apathy that can occur in addition to sleep changes and cognitive changes, but you're also coping with a chronic and progressive disorder. And so the information that you have about that disease, the attitude that you have, the support system that you have, it all kind of intermingles with the physiological aspect and can affect you from an emotional standpoint. And that changes over time.

Dan Keller 2:38
Are there different coping strategies or different concerns at different stages? I would think when someone is first diagnosed, their sense of self changes, they had plans, they've viewed their future one way. Now it's a different way. But as time goes on, how do you follow them, or how closely do you stay in touch?

Jessica Shurer 2:59
So there's a couple things there. Again, it's so different for every person. I think it depends on your attitude in general, but also your stage in life. So if you're a 40-year-old diagnosed with Parkinson's, and you're working with younger kids, you're going to view that very differently from a 70-year-old who is retired. And I think when someone is first diagnosed, they can react all different ways. I've seen anywhere from, "This is the most awful thing that could ever happen. Why me? I was always such a healthy person who was focused on exercise. I did everything right. Why did this happen to me?" to "Wow, this could be so much worse. I don't have a brain tumor. I don't have ALS. I was afraid of having Alzheimer's disease. This is sort of a relief," and everything in between. And then as you get into the disease, say a couple of years, they tend to wrap their heads around it: "Okay, this is something I can live with. I found the right doctor. I'm on the right medications. I learned that exercise helps." And then as the disease progresses, their attitude changes a little bit more. And again, not for everybody—sort of a generalization—but when the symptoms get a little bit worse, or medications aren't working as well, and the reality of the progressive nature of it kicks in, that can once again be very emotionally challenging for somebody. So I think it's really important to stay in close contact with someone when they're diagnosed, a few months out—I mean really along the whole continuum, progression of this disease—because it's constantly changing over time.

Dan Keller 4:39
How do you help them or other medical professionals help them learn coping strategies and resources?

Jessica Shurer 4:48
I think it's a really good reason to have a clinical social worker on every team. That's biased of me, though. I think that having a multidisciplinary approach to Parkinson's—more than just a doctor, or a doctor being able to say mood changes are part of the disease, or how have you been coping with it, or let me refer you to a therapist or a physical therapist, or whatever you might need at that time—some kind of health professional checking in with them outside of just the symptoms, just the medications, and saying, "How are you doing with this?" Figuring out what their strengths are, what their support system might be. There's a multitude of coping skills that people can have. We kind of boil it down to real simple things, like having a very flexible mindset, being able to adapt to the changes rather than fight them, purposely building the support system, proactively learning about Parkinson's, tapping into resources in their community if there are resources offered, such as Parkinson's-specific exercise or support groups, or reading Parkinson's resources so they understand the disease and not have misconceptions. But sometimes people try to find those things on their own. I think it's really supportive when healthcare professionals—their team—is able to point them in that direction. I have a lot of people come through me saying—not even necessarily from my clinic, but from anywhere—"I saw my doctor. They told me I had Parkinson's. They handed me a pamphlet and said, 'I'll see you in six months or in a year.'" And you're hit with this thing, and you're like, "What do I do with this label now?" So it needs to be more than that. It needs to be: here's information. What questions do you have? How are you feeling about this?

Dan Keller 6:41
Some people are out far from resources, not convenient to get to all the time. Is there anything they can do online or virtual? I mean, put together Skype meetings, support groups, things like that?

Jessica Shurer 6:57
People have to get really creative. I work and I live in North Carolina. It's an extremely rural state. Where I am in the Triangle in central North Carolina, we are very fortunate to have two centers of excellence and a multitude of support groups and exercise programs and funding for our departments on aging. When you get anywhere outside of these major cities, there's almost nothing. And so it takes a lot of creativity from the patients and the families, but also working with your healthcare team—again, hopefully a clinical social worker who's sort of skilled at tapping into resources. So if people do have internet access and ability to use the computer—and not everybody does—trying to find resources online, such as online support groups or forums. Of course, the Parkinson Foundation has our helpline that you can call if you don't want to go online and look at parkinson.org and you can talk to, usually, a social worker over the phone. But also like senior centers—I tend to recommend those because they'll have exercise equipment or they might have funding for in-home aides, even if it's only two hours a week. If there's no Parkinson's support group in your area, there might be a chronic illness or a caregiver support group in your area, where some of it might be relatable. You kind of have to cobble together those sometimes, or think outside the box.

Dan Keller 8:26
You brought up a caregiver support group. So do they have coping problems and coping strategies also, not only the patient?

Jessica Shurer 8:34
Yes, and they might be very different. I know some people call them caregivers. In the Parkinson's world, we tend to say care partner. And I'm sort of a believer that it should be a partnership between two or more people throughout the course of the disease. But with care partners or caregivers, they might not be on the same page as someone with Parkinson's. We kind of assume, especially with couples, that you're always on the same page. If you view Parkinson's one way, then your partner does too. But someone might think this is the worst thing in the world. I'm so overwhelmed, I can't do it. And their partner's like, this is not that big of a deal. We can figure this out together. One person might say, I want to be very involved in Parkinson's and go to all the support groups and learn all I can. And their partner might say, I don't want to think about it. I'm just going to live my life and pretend that Parkinson's isn't part of it. So care partners can experience their own coping challenges of all of a sudden having a role as a Parkinson's care partner or a Parkinson's caregiver. We tend to label them with that before they're even ready. They come to clinic, they might not view themselves as a caregiver, and a doctor might turn to them and say, "So you're the caregiver. Let me ask you a question." They're like, "Whoa. I never said I was a caregiver. I'm not giving any care right now." So it's their own roles and relationships and lifestyle. And you mentioned earlier the sense of future that people tend to think of care partners have that too. I viewed my retirement one way, or we had all these plans. Now what? Do I need to start thinking about nursing homes? I get those questions a lot, even when someone's very newly diagnosed: do I need to start thinking about nursing homes and my finances and Medicare and Medicaid, and who's going to take care of me? So I think care partners taking time to look at their own self-care through the process of experiencing Parkinson's is just as important as care for the person with Parkinson's, and they can't really be done in silos either. They need to be looked at as a patient and care partner, even if someone doesn't relate to those labels individually, but also together as a unit. Sometimes they need to check in with each other, and I'm always talking about the importance of effective, honest, open communication between a person with PD and their care partner, because they need to be on the same page through this experience.

Dan Keller 11:05
Very good. I appreciate it. Thanks. To find out more about mood changes in PD and coping with them, search mood on our website at parkinson.org. You'll find a variety of free mind guides to Parkinson's disease publications addressing mood, cognition, sleep, and psychosis. And you may wish to listen to episodes 36 and 37 of this podcast series on mood and depression, as well as watch our most recent expert briefing on mental health and PD with Dr. Laura Marsh. And as always, you can call our toll-free helpline to speak with our PD information specialists. They can answer questions and provide information about this topic or anything else having to do with Parkinson's. You can reach them toll-free at 1-800-4PD-INFO. 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. 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. 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.

Jessica Shurer is the Center Coordinator and Clinical Social Worker of the Movement Disorders Center at the University of North Carolina at Chapel Hill, a Parkinson’s Foundation Center of Excellence and a CurePSP Center of Care. She graduated from Penn State University with a bachelor’s in psychology and minors in Human Development & Family Studies and Gerontology. She received her Master of Social Work from UNC Chapel Hill in 2012, where she also obtained a Certificate in Aging and was a participant in the Hartford Partnership Program for Aging Education. In her current role, Ms. Shurer works as a team with the movement disorders specialists to address patient and care partner psychosocial needs, mood and coping, as well as offers short-term problem-solving counseling and connection to community resources. In addition, Ms. Shurer works to grow a referral network of Parkinson’s-specialized rehabilitation clinicians across the state, coordinates two specialty interdisciplinary clinics, one for Parkinson’s and one for atypical Parkinsonism disorders, facilitates both the Chapel Hill Parkinson’s support group and a PSP & CBD support group, and organizes educational programs for patients and care partners.