Dr. James Beck 00:00:00
Hi everyone. My name is Jim Beck. I'm the Chief Scientific Officer of the Parkinson's Foundation. I want to welcome you to our Expert Briefings today, Use It or Lose It: The Impact of Physical Activity on Parkinson's Disease. I hope everyone had a really good summer. This is the first of our series for the fall. We are on the thirteenth or fourteenth year of doing this. It's been fantastic. I hope everyone has been enjoying these and continues to do so. I know that our topic today is going to be really tremendous. A lot of interest in it, and Dr. Rafferty is an excellent speaker. Really pleased to have her today.

What I want to do real quick before we get going is just to introduce you to a little bit about how to navigate through Zoom. I know a lot of people have familiarity with it, but those of you who may be new or those of you who haven't done a webinar in a while, it's a good refresher. This is just a view of your screen right now, and there are three icons at the bottom that I want to draw your attention to with the red arrow. The first is the chat. This is where we are going to give information to you. My colleague Danielle has already sent a welcome message.

If you have any issues regarding Zoom, you can send that via Q&A or send us a text below. This is where we'll send you information, including links on how to download Dr. Rafferty's slides so you can have those later on if you'd like to take notes as part of this.

Next, I want to highlight the Q&A. This is where you, the viewer, will provide your questions for us to review and to share with Dr. Rafferty. If you're coming from Facebook Live, just put yours in the comment section, and then we have a colleague who will be capturing those comments there and sharing them with us later on.

This is a relatively new feature in the world of Zoom, and that's closed captioning or live transcript. If you're in an area that's hard to hear, or it's easier for you to read in addition to hearing what's going on, this is the button for you. You can click that on, and you'll see a computer-generated transcript. It's computer-generated, so it may not be super accurate, but it's pretty close, and it can be quite useful nevertheless.

Dr. James Beck 00:02:27
What I'd like to do now, and I think it's always important, is just remind folks what the mission of the Parkinson's Foundation is. That's really to make the lives of those living with PD and those affected by it better by improving care and driving research toward a cure.

Like everything we do at our organization, we include people who live with Parkinson's to advise us and give us their experience so that we are able to proceed forward in a thoughtful and knowledgeable way. We do our mission by tackling three separate goals. One, as I mentioned, is really improving care for everyone with Parkinson's, advancing research toward a cure. We invest significantly in both research and care, a significant amount of dollars, but we are also here to educate and empower our community. This is, I think, a perfect example with our Expert Briefing today.

Just to highlight for everyone, if you want to watch this video again of Dr. Rafferty and her presentation, in about a week's time, you can go back to Parkinson.org/ExpertBriefings, and there will be a link where you can download this recorded session. Also, as I mentioned, a link just appeared — thank you, Danielle — in the chat window, and you can download the presentation and have it online and print it out if you like and take notes on it. You'll also be able to have a link that will be on our website, and you can download our slides there as part of the process.

Now I'd like to get a chance to know who's on the call, who's listening today. Again, if you're viewing via Facebook Live, please use your comment section, and we'll get a sense of who's actually listening today, who's been able to make the transition from summer to fall and join us today as part of that.

We've got a number of choices to fill in. Choose the one that probably best fits you. I know that many people wear multiple hats, but here's an opportunity to tell us what you think best fits as far as that goes. Not surprisingly, of course, we see many people who are living with Parkinson's or have a loved one living with Parkinson's as part of it, and welcome some other folks as well, a fair number of healthcare professionals who are listening in today. I think there's a lot to gain from Dr. Rafferty's talk.

Dr. James Beck 00:05:09
Okay. Let's move on to meeting our presenter, Dr. Miriam Rafferty. She is a Doctor of Physical Therapy and a PhD, and is a research scientist and physical therapist at the Shirley Ryan AbilityLab, and an assistant professor at Northwestern University's Feinberg School of Medicine in the Departments of Physical Medicine and Rehabilitation, as well as Psychiatry and Behavioral Sciences. I'd also like to add she's a longtime steering committee member to our Parkinson's Outcomes Project and has been a great colleague as well. I'm really excited to have her join today.

Dr. Rafferty's research focuses on health services delivery models for people with Parkinson's disease, particularly examining how proactive rehabilitation can facilitate long-term community exercise participation. We all know exercise is so important. That's the subject of our talk today.

Importantly, she also uses implementation science methodology to improve adoption of evidence-based practices, and she also conducts research to inform the implementation of novel technologies in a real-world rehabilitation setting. Without further ado, I'd like to turn this over to Miriam and welcome her to Expert Briefings, and I'm looking forward to her presentation and the questions that come.

Miriam Rafferty 00:06:28
Thank you, Jim.

Okay. Here we are. Thank you all for being here today. I'm excited to present to you about using it or losing it. Sorry, Use It or Lose It: The Impact of Physical Activity in Parkinson's.

Here are my disclosures: just that I have received funding from the Parkinson's Foundation, as Jim mentioned, as a Parkinson's Outcomes Project steering committee member, and I'll be presenting some data from the Parkinson's Outcomes Project today. I also will be talking about current research that's funded by the Department of Defense on using technology to help behavior change.

The learning objectives for today, as stated in the Expert Briefing, are to help the learners, or everybody here, understand why regular and daily movement is important for people with Parkinson's disease and to explain the science behind deconditioning and what is happening in the body when there's a lack of physical activity.

I'll have three sections of the talk. The first is to talk about the benefits of exercise and exercise guidelines that were put out by the Parkinson's Foundation with the American College of Sports Medicine last year. I'll move through that section pretty quickly because I know that the reason you all are here is probably because you know that exercise is good for you. I will just share some of the latest resources that the Parkinson's Foundation has. Then I'll talk about the difficulties with regular exercise participation and maintenance, maintaining exercise, and finally I'll talk about deconditioning.

I know Jim just had a poll, but I want to ask one more time, which of the following best describes you? Are you a person with Parkinson's disease? Are you a fan, supporter or caregiver of a person with Parkinson's disease? I put it that way, as a fan and supporter, because talking about exercise, it's really a positive interaction when you can help support somebody, an athlete with Parkinson's or more of an exercise beginner. Or are you a clinician who works with people with Parkinson's disease? If you're other, feel free to jot it down in the chat box or the Q&A box and let us know.

Again, person with Parkinson's, a fan, supporter or caregiver, or a clinician. Great. We have about 80% of the people here are people with Parkinson's, and about 25% are fans and supporters. We have a handful, about 4% to 5%, that are clinicians. Thank you all for being here, and hopefully I will make sure that information is helpful to everybody.

Miriam Rafferty 00:09:10
Benefits of exercise. Exercise is good for you. There's a multitude of research out there on all of the different things that exercise can help, and this exercise research has been summarized lately in many different formats. One is the ACSM, the American College of Sports Medicine. They have guidelines that were just updated. This says tenth edition, but they were actually just updated last year, and there's an eleventh edition now that supports exercise for people with Parkinson's. The American Physical Therapy Association also just published their clinical practice guidelines that highlight the importance of exercise for people with Parkinson's.

Exercise can improve walking, balance, strength, mobility, so tasks like getting around the house, and range of motion if you're working on flexibility or posture. When done in a really structured, rigorous program, it can improve your Parkinson's-specific motor disease severity. That's the score that the doctors use when they have you tap your fingers and move your hands. We call that the Unified Parkinson's Disease Rating Scale, and that can improve with exercise. It can improve quality of life; non-motor symptoms, so things like mood or depression and anxiety, as well as cognition, can improve with exercise; and it can have a good impact on your aerobic capacity, or the ability of your heart and lungs to function well.

It's task-specific. If you practice strengthening exercise, you will get stronger. If you practice exercise that relates to walking, your walking will get better. But if you practice exercise related to just walking, your strength and your balance might not get better. You really have to focus your exercise on what your goals are.

There is a very broad spectrum of exercise and physical activity. Exercise itself is defined as a subset of physical activity that is planned, structured and repetitive, with an objective to improve or maintain your physical fitness. This is when you are purposely going out to try to improve your health. It exists on a spectrum. Essentially, we don't want people being sedentary. You need to sit down and lie down when you're resting, but otherwise during the day, to be up and moving.

At the other end of the spectrum, we have vigorous exercise. This is frequently thought of as aerobic exercise, but also can include strength training like circuit training, where you're really pushing your muscles hard and keeping moving, or fast cycling. In between, also very good, is moderate-intensity exercise. This could be a brisk walk, but has to be for a sustained period of time, or leisurely cycling.

Finally, there's light physical activity. I have that here in gray because it's the gray zone. It doesn't appear to be as good for you as doing moderate- to vigorous-intensity planned, structured exercise, but it is much, much better than being sedentary. There is a lot of research that just decreasing your sedentary time and doing something can be beneficial for your health. That could include yard work and housework, standing and leisurely walking. Balance and flexibility exercises even sometimes fall into this light activity. A lot of times, our physical therapy exercises are really only light physical activity.

What I'll be talking about today is how do we think about participating in this whole spectrum of exercise and inching your way up toward more moderate to vigorous intensity if that is safe for you? And how do you maintain that over the long run?

Miriam Rafferty 00:12:45
Because of the strength of all of this evidence, exercise is now considered an adjuvant or adjunct therapy for people with Parkinson's disease. The guidelines that the American Academy of Neurology put out for neurologists say that neurologists should recommend 150 minutes a week of at least moderate-intensity aerobic exercise, and that they should discuss rehabilitation at least annually with people who have Parkinson's disease.

There are a number of guidelines from Europe, Canada, the UK and Spain that also clarify that neurologists should consider recommending early intervention by physical therapists to address an individually tailored exercise prescription and physical activity plan. They also recommend early occupational and speech therapy, meaning by the whole interdisciplinary team is kind of my bias, and as a rehabilitation professional, I think it's wonderful. A lot of the guidelines do support that as well.

As I mentioned earlier, the Physical Therapy Association here also recommends that physical therapists should be promoting and prescribing aerobic, strength and balance exercises to help with all of the things that I mentioned earlier. Now, this guideline just came out and was published in 2022, and some of the interesting things are that it also recommended that physical therapists use behavior to help people with Parkinson's improve their physical activity in general.

Some people would say that this is kind of a novel use of physical therapy because, traditionally, it really was that people with Parkinson's were referred by their physicians to physical therapy when they had a movement problem. When their pain was so bad that they couldn't move, when they fell and hurt themselves, that was when physical therapy was recommended. Now you can see in these guidelines that we're really starting to consider recommending early intervention and prescribing these types of exercise: aerobic, strength and balance. If done per the guidelines, it really requires the person with Parkinson's to be moving on their own, and so that also implies kind of an earlier intervention model as well.

How do we do this? What should we do? This is where the Parkinson's Foundation came in. As I mentioned, they partnered with the American College of Sports Medicine, which is kind of the preeminent group that puts out exercise guidelines and exercise prescription recommendations, and they developed the Parkinson's-specific exercise recommendations. These state that people with Parkinson's should strive to do aerobic activity, strength training, balance, agility and multitasking, and stretching.

Miriam Rafferty 00:15:38
One of the things I want to highlight is this is the infographic. It's available online on the Parkinson's Foundation and their fact sheet section, and Danielle helped put that in the chats if anybody wants to go and access them themselves. I'm not going to go through them in detail. I just want to flash them on the screen and say there's a lot here, and we get that.

This is too much, I think, for most people to say on your own, okay, I'm going to figure out how to do three days a week of aerobic and two to three days a week of strength, two to three days a week of balance, and two to three days a week of stretching. Now you've run out of days in the week, possibly time in your day and time in your week. This is where the physical therapist can come in, or a really knowledgeable exercise professional, and help you create a tailored plan for yourself.

I like to compare this to the way that doctors are responsible for prescribing your medicine. This is just page one of 42 in the levodopa-carbidopa prescribing recommendations, and we don't say, "Okay, I'm going to read through this handout and then decide what the best prescription and dose is for myself." That's what we count on the neurologist for.

The Parkinson's Foundation and the ACSM also recognize that, and they recommend that people with Parkinson's see a physical therapist who specializes in Parkinson's disease, and I understand that can be a big barrier, for a full functional evaluation and to provide exercise recommendations.

That few minutes there could be an entire talk or series of talks about aerobic, strengthening, balance and agility, and stretching exercises, and today I'm not going to go into that. Now I'm going to talk a little bit more about how you, or how the person with Parkinson's that you help and cheer on and support, how are you exercising, and how can we help you participate more smoothly in that over time?

Miriam Rafferty 00:17:12
Now I have my second polling question. For this one, the responses are a little bit long, so I'll read them. It starts with A, which is, I presently do not exercise and do not plan to start exercising. B is, I presently do not exercise but have been thinking about starting to exercise within the next six months. C is, I presently get some exercise, but I am not exercising regularly. D is, I presently exercise on a regular basis, but I have only been doing so within the past six months. E is, I presently exercise on a regular basis and have been doing so for longer than six months.

Just to recap those choices, you should see the poll up on your screen now, but A is you're not exercising and not really even thinking about it. B is you're not exercising, but you've been kind of thinking about it a little bit. C is you get a little bit of exercise, but you're not really doing it regularly. D is that you are regularly exercising, but you started this pretty recently in the last six months. E is that you're exercising, and you have been doing so regularly for over six months.

Okay. I am preaching to the choir here. Over 50% of you are regular exercisers and have been maintaining your exercise for over six months. That is wonderful. I'm really impressed with this group. We have about 15% of people who are exercising regularly, but it's new for them, so thank you guys for coming. Hopefully, you'll be able to stick with it.

We have 25% of the people here who are getting some exercise, but maybe not as regularly as they should or feel that they should. There is only 1% of the group that are not regularly exercising and not really planning to start it right now, but you are not alone. There are multiple people in that 1% because this is such a huge audience. Thank you guys for being here, and let's see what that means. Why did I ask these really long questions?

Miriam Rafferty 00:19:40
You'll note that there's kind of a reference on this slide, and that reference relates back to a stages of exercise change questionnaire. We call people who are in that maintenance phase and they're exercising regularly, we kind of label them as being in the maintenance phase. Right before that is the action phase of exercise. Before that, we have people who are in the preparation phase.

The preparation phase is when you're starting to exercise, you're making some changes in your life to try to prioritize exercise, but you still haven't quite been doing it regularly enough that we're sure it's going to stick. Contemplation means you've probably gotten some education, you know that exercise is good for you, but you haven't yet made that leap to figure out how to start doing it yet. Hopefully today we'll give you some motivation to get started.

Pre-contemplation, really, that's a stage where people are probably perceiving so many barriers and how exercise is going to be very hard for them that they haven't yet made that leap to start exercising.

This exercise stages of change comes from something called the transtheoretical model of health behavior, or readiness to change and stages of change. There are four important aspects of the transtheoretical model. One is getting ready, and this is moving through the stages of change.

If I, as a physical therapist, meet somebody in the clinic and they are not exercising, they haven't really even thought of exercising, or maybe they used to exercise and now they're actively really concerned about doing it — it's not safe for me; it hurts when I exercise; I can't exercise safely — that is somebody that I would kind of think is in the pre-contemplation stage. I could give them those exercise guidelines that were on one of the previous slides and say, here's what you need to do: 150 minutes a week. We know from the research that that is not an effective way to help somebody start to exercise.

That is overwhelming. In fact, those guidelines are overwhelming even for people in the preparation stage of exercise or action stage because there's just so much that we're asking of them. The stages of change suggest that instead of jumping from pre-contemplation to maintenance, we really want to try to help somebody work themselves through the different stages of change.

That gets into the second part of the transtheoretical model, which we call the processes of change, which are how does one move from pre-contemplation to contemplation? How does one move from action to maintenance? That is something that these behavior change techniques that are recommended now in the American Physical Therapy Association's guidelines help the therapists think through. We still need to get a little bit of training in the physical therapy community to make sure that everybody's using them consistently, but they are something that we learn in PT school. We just might forget to do them.

We also know that something called self-efficacy, or increasing confidence, is important to help people move through these stages of change, and we need to help people weigh the balance of the pros and cons of exercise. When there are cons of things like not feeling safe or being in pain, we need to address each one of those in turn to help somebody get to the point where the pros outweigh the cons.

Miriam Rafferty 00:23:00
How do we get to, or for the 50% of you here who are regular exercisers, how do you stay in that maintenance phase where you say, “I am presently exercising on a regular basis, and I have been doing so and will continue doing so”? We asked that in the Parkinson’s Outcome Project. We asked two questions: What are the characteristics and outcomes of people with Parkinson’s who change or maintain their exercise over time? And what helped them increase and maintain their exercise specifically?

For those of you who aren’t familiar with it, the Parkinson’s Outcome Project is a longitudinal study. Maybe many of you here in attendance have gone to your doctor regularly, and every time you go, they’ve taken a battery of questionnaires and saved them, and we’ve seen how people change over time. There are over 13,000 people with Parkinson’s disease in that registry, many of whom have been in it for over five years. We’ve really learned a lot about how people with Parkinson’s at these expert centers are treating their Parkinson’s, what types of behaviors they have, and what types of professionals they’re seeing.

What we found was that from a health outcomes perspective — and here we were looking at hospitalizations, falls, quality of life and mobility — in general, people who were on the low end of exercise, so these were non-exercisers or people who were just starting or just stopping exercise, were all about the same. People who were in the high exercise groups, so these would be people in that maintenance category or people who were actively increasing or decreasing but kind of fluctuating up high, were pretty similar and better.

It’s okay if you’re increasing or decreasing as long as you’re kind of up at a high level, closer to that two and a half hours per week. But how do you get there? We all fluctuate with our exercise. Some weeks I exercise two and a half hours a week. Some weeks it might be a little bit less, and some weeks it’s going to be a little more. How do you change from being in a low-exercise group to a high-exercise group? Here, our statisticians found that the difference of an hour and a half a week was the difference that we need to strive for. If you’re a new exerciser and you’re not exercising at all, or you’ve recently had that decrease where you’ve struggled to keep your exercise going, instead of aiming for the — I guess some people say aim for the stars because you’ll land on the moon — if you just aim for the moon at an hour and a half a week, that’s good enough here. You’ll have better health outcomes with that.

We started looking at this hour-and-a-half difference in how people are fluctuating up and down. We wanted to see then what predicted who was going to increase their exercise by an hour and a half, and none of our Parkinson’s Outcome Project variables predicted people who increased. We have variables that predict people being high exercisers, so people who are younger in age, people who’ve had their Parkinson’s longer — these are kind of obvious things. They tend to exercise more than people who have more advanced Parkinson’s disease, but they didn’t actively predict who was exercising. That meant that people who are early in Parkinson’s disease and people who are later in Parkinson’s disease can still increase, and we just don’t really know what to do with our quantitative variables, like age, disease duration and doctor’s visits.

We then also looked at what predicted a decrease in exercise, and this one also was not totally surprising. We found that people who had high exercise levels at baseline were three and a half times more likely to decrease their exercise. Part of this is that if you’re not exercising a whole lot to begin with, we can’t capture that decrease, whereas we can mathematically capture that decrease in people who are exercising high amounts. But what that tells me for this audience here, the 54% of you who are exercise maintainers who are exercising at high levels and maintaining it right now, is we need to be careful because you’re doing well at one visit, but a year down the road, a lot can change. How do we prepare for that change and get you ready?

Miriam Rafferty 00:27:12
To figure that out, since the data was not very helpful here, I don’t think, in terms of telling us what could predict how we could help people increase their exercise, we then went to participants and talked to 53 different people who are in this database. We had their mathematical data of what was in the registry, and then we spoke to them on the phone for half an hour. We really tried to say, “In the last year, or about two years ago, it said that you decreased your exercise. Can you tell us what you were doing? What happened? Did you have an injury? Did your Parkinson’s get worse? Or maybe your exercise increased. Did you go see a physical therapist? Did you see a doctor? Did you join an exercise group?”

What we learned from this group of 53 people was that fluctuations were the norm. In fact, we told them that their data showed that they increased their exercise or decreased their exercise in the last year, and they said, “No, I didn’t.” When we ask these questions about their exercise at one point and say, “In the last couple weeks, how much have you exercised?” that does not capture any individual’s behavior over the course of a year.

Mathematically, that’s very disappointing because we really love looking at these large data sets and trying to draw conclusions from these 13,000 people. You think we could come up with something there. But really, what we learned is that it’s really hard for people to describe their exercise and that any week in time doesn’t really capture everything.

What we did learn was that positive influences of things that helped people increase their exercise, when they personally felt that their exercise was increasing, included learning more about exercise. For those of you on this call who are maybe in the pre-contemplation or contemplation or preparation phase, you are here, and you are learning about the importance of exercise maintenance. Great job. You’ve checked one off your list.

You also have to choose to prioritize your exercise. That’s another one that’s a little bit harder and relies on weighing the pros and cons. Some people felt that the reason they could increase their exercise was because they just had a motivated personality. Other people maybe didn’t say, “That’s a part of who I am, and it’s my personality.” They said that their social support network helped to provide the support that they need. For the 20% of people here who are caregivers, you guys are that social support network. For the people with Parkinson’s here or the clinicians, you guys are also a part of each other’s social support network or your patient support network to help them exercise.

People who did increase their exercise frequently felt rewarded by that because they felt better when they exercised. Some people reported that they were better able to exercise more or maintain their exercise for longer when they changed their exercise expectations. Prior to having Parkinson’s disease, you could be a marathoner or an elite cyclist, and there are many influential people with Parkinson’s disease who have been professional athletes. But once you have Parkinson’s disease, you might have to reset your goals and figure out what is the best level of exercise for you now.

Other people felt that they were really exercising to avoid feeling guilty about not exercising. If that’s what it takes, I am here to say go exercise, and maybe feel guilty next time you go to your doctor and they ask you about your exercise if you’re not doing it. Maybe that would be your motivator. Other people felt that having exercise in a convenient location was really important for increasing exercise, like a new class got added in your community, and now you can exercise more.

Miriam Rafferty 00:31:08
Negative influences are things that have been shown in the literature before. The biggest thing that makes it hard for people with Parkinson’s to exercise is your symptoms. We know that, and again, this is my total bias here as a physical therapist, but that’s why these health-related barriers are things that your physical therapist can help you address. People lose confidence in their exercise. They have a few bad days in a row. They maybe have a fall and start becoming nervous. Again, they start experiencing more pain or fatigue when they exercise. These are things that your healthcare team can help with and be a supporter for you.

People who had a bad experience with exercise, so they go to a class and they got hurt, or they don’t like it, or they start having shoulder pain, or if they just don’t feel like exercise is helping them at all. And then inconvenience. We had a lot of people that actually reported being exercise decreasers because the class near them ended. This was before COVID. Now with COVID, we know that you guys have all had a lot of inconveniences related to exercise because it’s been a lot harder to access in-person classes. That said, there’s now the added convenience of online exercise for your home, if that’s safe for you.

These are things that we can help people weigh, the pros and cons of different types of engagement and exercise, to help you find a plan that works for you. But my take-home message here is that exercise fluctuations are the norm. For us to try to say you’re an exerciser or you’re not an exerciser, or did you increase or decrease in the last week, what we know is everybody’s going to have these fluctuations where they decrease. We all get colds. We all get busy. What do you have to support you to get back on the bandwagon when you fall off?

This is all of us kind of hopping around in between these sections of being a maintenance exerciser. You get a cold for a couple weeks, and you fall off the bandwagon. You need to get back on. What supports do you have in place to jump back on the bandwagon? And why should you bother? I think for all of you here, it seems like you know that this is important. I will get into the science of it a little bit. And that’s deconditioning. This is one of the reasons why we want everybody to get back on the bandwagon of exercise, to try to prevent deconditioning.

Deconditioning can become just a vicious cycle in people with Parkinson’s. First, you do have some Parkinson’s-related changes in walking and balance. This is why, as a physical therapist, I love working with people very early after diagnosis, in the first couple months if possible, because I want to measure you before you have major problems. And if I see a small thing, like you can stand on your left foot for 18 seconds and your right foot for 30 seconds, then I want to try to address that problem on your left foot. Because if I can try to jump in the vicious cycle at the very beginning, maybe we can prevent some of that decline or slow down any decline that you’ll experience.

Once you start experiencing more Parkinson’s-related walking changes, people with Parkinson’s frequently become more fearful of exercise or they’re just uncomfortable exercising. You might be less comfortable going to your gym. You might have pain related to your Parkinson’s disease, or related just to the fact that you get older. When you have Parkinson’s and you get knee pain and back pain, we want to address those things early as well because if we don’t address them, those things can actually lead to decreased exercise. When you have decreased exercise, you have deconditioning, and you will lose strength and endurance. And then when you lose your strength and endurance, you’ll have worse changes in your walk and balance. It just creates this vicious cycle, and we want to try to jump in if we can stop that cycle from happening.

Miriam Rafferty 00:35:08
Deconditioning in this context here happens with a change in your body that mostly affects your lungs and your muscles, and it occurs during any period of inactivity. It makes you feel tired and weak or fatigued, and being inactive will then decrease your ability to be active. Use it or lose it. Let’s reverse this cycle.

I wanted to share a little bit about the science of deconditioning so you kind of understand what’s happening in your body if you’re currently taking a break from exercise. These are things to be aware of. And if you are staying on the bandwagon, these are things that can be reversed. Jump back on the bandwagon to reverse this.

First, muscles and bones. There is decreased muscle size, which we call atrophy in the field. If you are inactive, so if you are hospitalized, and then in the hospital a lot of times you have to stay in bed, you have to call the nurses if you need to get up, you can lose 1% to 3% of your muscle strength per day being inactive. One to three percent. Most of us, we won’t notice. If you are sick for a couple days, you have a cold and you’re just less active at home, you probably won’t notice, and you can jump back on the bandwagon quickly. If you are in a prolonged hospitalization, you will feel noticeably weaker by two to three weeks after that.

That’s where we want to try to know yourself. If you’re trying to get back on the bandwagon and it’s been three or four weeks, it’ll feel different for you when you exercise. But this is where changing your exercise expectations can really help. Just make sure that you’re working yourself back up to where you want to be, slowly and gradually.

You can also, due to a period of inactivity, feel more stiff and experience more pain. Because you’re not up on your legs and walking as much, you can experience osteoporosis, and more osteoarthritis and inflammation can occur in your joints when you do start to move around again. This is just a picture here showing normal muscle and an atrophied muscle gets thinner. Those muscle cells have less power to them.

Also, we have changes in our heart. This is what leads you to feel fatigued or why you have to stop and catch your breath when you’re walking. This is related to decreased cardiac output. This is how much blood pushes out of your heart every time it pumps. When you are very fit, every time your heart pumps, it pushes a lot of blood out. Then when you exercise, that volume can increase and push more. You have a greater volume. When you become deconditioned, your heart doesn’t push as much blood out with each pump, which then means it has to increase how fast it pumps to get blood circulating through your body in a healthy way. You start with a faster resting heart rate when you start walking, and then your heart rate reaches those limits a little bit sooner. You can’t push yourself quite as hard. There’s that period after deconditioning where your heart rate is a little bit high, and it takes some time to get your heart pumping efficiently again.

Again, just like muscle strengthening, this is reversible. If you start exercising and working your way back up again, you can increase your cardiac output.

Miriam Rafferty 00:38:30
And then lungs. You can have decreased oxygen consumption ability. This is more important if it’s really a prolonged bed rest and you’re in the hospital, because we know that when people lie flat in the bed for a long period of time, they have mild lung collapse. This isn’t like your whole lung is actually collapsing. This is the little tiny sacs in your lungs, which are really important for exchanging oxygen with your blood cells. Those little sacs, some of them get squished. That makes it harder for you to take a deep breath and to get lots of oxygen circulating through your body.

These are the things that we’re trying to avoid or to address before they happen for too long. There are three stages that can happen with deconditioning. In just a few days’ time, as I mentioned, you do have some mild changes, that 1% to 3% loss of strength, and this can change your ability to do your usual exercise activities such as running, biking or swimming. In just a few days’ time, those things will feel a little bit harder. Just set your expectations right as you work your way back up to it.

Moderate deconditioning would change your ability to do normal everyday activities such as walking or shopping for groceries, where you might get more fatigued when you’re out and about doing your regular chores. In severe, prolonged hospitalization or bed rest, severe deconditioning would be that you might not be able to do even minimal activities such as your usual self-care. Essentially, what we want to do is try to catch these things as early as possible.

For those of you who have had this happen, know that it’s completely normal for you to feel that exercise is harder after you’ve had a pause in your exercise. Keep working at it. Definitely see a physical therapist if you need to, if you’re experiencing any of these symptoms.

In summary, exercise fluctuations are the norm. If you have experienced them, that is completely normal. If you are currently those exercise maintainers, just know that if it does happen to you, you can bounce back from that. We’re here to help you with that. We can be your supports to jump back on the bandwagon as a physical therapist, your healthcare providers. When we ask you how much you’ve been exercising lately, we’re not intending to make you feel guilty about it, but tell us the truth and let us help you if you need help.

Now, which of the following best describes you? This is my last poll. Where are you on the exercise bandwagon? Are you currently a full-time exerciser, these maintainers? Are you exercising on the bandwagon and doing great? Are you B, trying to get back on the bandwagon? You slipped off, and you’re here, and you’re motivated, and you’re going to jump back on. You’re one of these people here reaching up, actively getting back on the bandwagon. Do you need help finding a bandwagon? Are you a former exerciser or a non-exerciser who needs somebody, you need your supporter to come and say, “Hey, can I help you back up to that? Should we go to an exercise class together?” Or have you given up on the bandwagon completely?

A is you’re exercising regularly on the bandwagon. B is you’re trying to get back into exercising, but you know it, and you’re working towards it. C is you can’t even find the bandwagon, and you’re looking for somebody to come help you. And D is you gave up on the bandwagon.

Miriam Rafferty 00:42:03
Okay. It matches our previous poll. About 53% are exercising on the bandwagon right now, so thank you for being up there. About 30% of you are trying to get back on the bandwagon, so hopefully you’ll leave today feeling motivated. And for those of you, the 15% of you or so who need help finding the bandwagon, care partners, supporters, healthcare providers who are here, let’s see what we can do to help our people here with Parkinson’s to get back on the bandwagon. Or you could be one of the caregivers here who needs help getting back on the bandwagon, as I sometimes do as well.

What are you doing right now to help for motivation? Holding yourself accountable or helping to hold somebody else accountable. How are you making sure that you enjoy your exercise? Because I think being on the bandwagon, you have to enjoy it mostly. It makes it a lot easier to be up there.

Exercise: the motivation required. Maybe it’s that dinosaur chasing you. Maybe it’s a physical therapist, a coach, a trainer, an exercise class, an exercise buddy, a family member who is there pulling you into your exercise routine. Maybe it’s digital health technology. We’ve been doing a lot of work trying to figure out how to help people with Parkinson’s use commercially available watches, exercise trackers, to help hold themselves accountable. If you are a supporter here, a family member, there are apps where you can kind of share your activity with each other. We know that exercise is good for people who don’t have Parkinson’s. Buddy up with each other. It doesn’t have to be a person with Parkinson’s being that exercise buddy. Share your data. Help hold each other accountable there.

I have to acknowledge the study team members and the people who helped support this research. As I mentioned, the Parkinson’s Foundation helped to support this, as did the Davis Phinney Foundation. The Department of Defense has also been a really good funding source for this exercise research. Thank you for all of you who are here. I look forward to answering some questions.

Dr. James Beck 00:44:23
Thanks very much, Miriam. That was really fantastic. I think it was great too to really acknowledge that everyone has trouble maintaining exercise because I think that’s one of the issues that you listed a number of reasons, but what captures my mind is that people feel some shame for not being able to exercise, and then that can really act as a barrier to keep from going back and doing it. But it’s something that the best of us have trouble with, and so I think that’s an important thing to recognize, that it’s something we all grapple with and need that motivation with which to do it.

I guess the question that comes to you then is, I’ve just heard your wonderful presentation, and I’m one of those people who wants to move to the next stage. What do I need to do to consider exercising? Do I need to go to my neurologist to get a prescription for exercise? Can I just go to a physical therapist? And then if I have to go to a physical therapist, how do I find one who specializes in Parkinson’s? Lots of questions. We’ll let you break them down. Sorry.

Miriam Rafferty 00:45:26
No, that’s it. Those are all great questions, and to some extent it depends actually on what state you live in or what country you’re from. It never hurts to talk to your neurologist or your doctor and have them sign off that, yes, you are healthy enough to exercise. It never hurts to ask them. The other thing about neurologists, and especially a movement disorders specialist neurologist, is that they generally know great PTs in the community and can lead you in the right direction. They’ll say, here in Chicago, for example, where we’re a big city and we have large suburbs. If you see one of the experts downtown, they can kind of say, here are the experts downtown. We know some experts in the suburbs.

They might not be convenient for you, but here's a list of other people. It really depends on where you live, and the movement disorders neurologists generally have a good network of the providers in the area. When it comes to going to PT, again, it is state dependent. Technically, in most states you don't need a referral, but you might need a referral for your insurance, and that's frequently the case. For example, with Medicare, you need to get a referral. Again, go see a neurologist. Even your primary care doctor can give you a referral to physical therapy.

I am biased, but I definitely think that physical therapy is the perfect place to start because we will, like I said, fine-tune any problem areas you're having. Or, if you're not having problem areas, just sign off and say, go to your community gym, go to your YMCA, and join any exercise class because you don't have any major deficits. Or here's a deficit that we'd like you to start working on, and we can help tweak your exercise routine to make it personalized for you.

Exercise groups are another great place to start and typically can be a really nice community of people, specifically those who have Parkinson's disease. We also sometimes just recommend community exercise classes like Tai Chi for general older adults. That can actually be really nice for a person with Parkinson's and their care partner, or a person with Parkinson's and a friend, because it's something that they can both participate in at their ability level. I love saying start with a PT. I recognize that that's not easy in some communities, so neurologists can help.

The other people I will give a plug here, and Danielle can probably put the link in the chat, is that calling a line like the Parkinson's Foundation's Helpline can also help direct you to local exercise resources. They'll look up your ZIP code and help you.

Dr. James Beck 00:47:58
Yeah, that's right. We also have, just to put a plug in for the Foundation, as part of our PD Health at Home series, Fitness Fridays. There's an hour-long virtual session for exercise that a lot of people are really enjoying, and I think it's something that's great for everyone.

One of the things I just want to delve a little deeper in, and I think you touched on it, but I know that one of the questions that's come in is really acknowledging that copays for physical therapy can be expensive, and they've got a lot of other costs. Do you need to see a physical therapist all the time, or do you just see the physical therapist at the outset to get your plan, and then you can maybe carry it on your own or move forward? Again, I think you touched on it a little bit, but it'd be great to hear you elaborate a bit on it.

Miriam Rafferty 00:48:49
Yeah. Physical therapy, again, is going to depend by state and insurer by insurer. They can be inexpensive copays. Some insurance companies consider physical therapists a specialty like a cardiothoracic surgeon or a brain surgeon, and so the copay for physical therapy is the same as if you went to go see your brain surgeon.

I appreciate the vote of confidence that we are a specialty because we are. All physical therapists now are getting a doctorate-level degree, but nobody sees their physical therapist like they see a brain surgeon. It needs to be affordable. For those of you who are advocates out there, please advocate to make sure that that doesn't happen.

If you do have a high insurance copay, my personal favorite delivery model for people with early Parkinson's is what we call a dental model, which is where you actually would just see your physical therapist once at the outset, maybe once every six months, for them to spot-check your balance, walking and mobility; screen all those things; evaluate them; and give you a good exercise plan. Then you're doing the exercise on your own.

We start out that way. Sometimes, if you are having an acute walking and balance problem, the evidence says that doing your physical therapy two to three times a week is the most effective, to have you on that exercise plan. It might be for four weeks or eight weeks, possibly up to 12 weeks. But really, they should be weaning you off of needing PT and helping you figure out how you're going to keep up with that exercise on your own.

I guarantee those 55% of people who are exercise maintainers here are not going to PT three times a week to maintain their exercise. They have found ways to work it into their own lives and their routines. I think physical therapists are helpful. I think we can be helpful in just a few visits. If you're more advanced, you might need a little bit more therapy, though.

Dr. James Beck 00:50:41
Fantastic. Your physical therapist can provide maybe a recommendation for a variety of exercise to do, because I know that's one of the things I've heard feedback from people who, especially during the pandemic, may have been stuck on a treadmill in their basement or wherever, or just really limited on the exercise and find it somewhat monotonous. Can they provide some recommendations for a variety of exercises to consider? Is that the idea?

Miriam Rafferty 00:51:08
Exactly. We have those infographics the Parkinson's Foundation made with aerobic, strength, balance, agility and multitasking, and flexibility. What we do is say, okay, what is your lifestyle like? How many free hours do you have a week? Are you a young person with Parkinson's with a young family, in which case it might be not a whole lot? Are you prime of life, working 80 hours a week? Are you retired?

We can try to figure out the best way to tweak your exercise routine so that you're finding an activity that you enjoy. Strength training at a gym with hard weights might be enjoyable for some people, but not for others. We'll try to help you learn exercises that can maybe kill two birds with one stone, as they say. How can you do strength and aerobic at the same time so that you don't spend your entire life at the gym if you don't have all day to spend at the gym?

Dr. James Beck 00:52:05
Yeah. I think being able to incorporate exercise in your life is really a challenge, and if you can get it done, it's a wonderful thing. You can kill two birds with one stone, bike to the grocery store, get to the grocery store and get your cycling in, if you can do that and if you're in a community that can do that.

This question came in, and I thought it was really quite funny, but I think you may have touched on it a little bit. It would be great to just hear your thoughts on it. Why is exercise so much harder than it used to be? Is it because someone is aging? Is it because of deconditioning? Is it because of Parkinson's? What are your thoughts on that? I can see that as also a barrier for people to say it's just not what it was when I was 20.

Miriam Rafferty 00:52:49
Yeah. It is all of those things. Exercising is harder for all adults as we get older. I think we all also go through phases in our life. I have two young children. It has become harder to exercise. Someday I'll be taking them to soccer practice and I can leave them there and then go for a run, but right now I can't leave them. We all go through phases where things are harder and easier. Some of it is just life. Some of it is aging, and all adults who age lose muscle mass. It happens to all of us.

Now, there is research, even nonagenarians, so people in their nineties, if they start a strength training program, they can get stronger. It takes more work. It's harder. They're probably lifting less weight than they would have lifted when they were in their sixties, forties or twenties, but if you set your mind to it, you can do the work and get stronger. It is harder as you get older.

In general, people with Parkinson's, we do know actually that their muscles get weaker more so than age-matched people who don't have Parkinson's disease, particularly extensor muscles. The extensor muscles are kind of like everything that's holding you upright, and so that does just increase your fatigue when you're exercising. Those are the motor symptoms. Other motor symptoms include that your balance and walking get a little bit more difficult. Walking on a treadmill, it's harder to even find a type of exercise that you can do safely.

Man, this laundry list is kind of like, I'm not meaning to harp on this. We're going to talk about positive stuff next, Jim. But non-motor symptoms are also really important and can make it harder for people to exercise. With Parkinson's disease, it's the Parkinson's disease, it is not you, but the Parkinson's disease can make you feel more depressed, and it can make you feel less motivated. It's called apathy.

It is just harder to get up off the couch and get motivated to go. For the small percent of you that are really struggling with exercise right now, know it is not you. It's the disease that is taking that. It is harder, and that's really where I think all the supporters and care partners that are here can come in and how you can support each other. We make it so fun for each other that it becomes worth it. It can be fun, emotionally fun, or it can be fun because you start to feel better.

It's harder to make that leap to get up off the couch, and it feels fatiguing at the time, but it starts to feel better as you go. I think the return on investment is very high.

Dr. James Beck 00:55:25
Yeah, I think that's a really good point too, because the ability for exercise to improve non-motor symptoms can help break that cycle of that apathy, where it will keep you on the couch. It requires some real fortitude in order to get up and do it, but being able to break it, I think, will go a long way, as you said, to help.

A real practical thing: where someone feels like they're ready to exercise, maybe they've talked to their neurologist and they're ready to go, and they want to do some aerobic exercise, what's a good way to think about a good target heart rate for that? We hear, is it 70%? Is it 80%? How does one determine that, because people are different ages?

Miriam Rafferty 00:56:07
Well, I'll start by saying go to a PT and get an individualized targeted zone. There's a lot of different ways to calculate your target heart rate. The easiest and the one that you'll find on a poster at every gym is 220 beats per minute minus your age. A percentage of that, like 70% of that, would be vigorous exercise. Fifty percent of that might be more moderate exercise. You could start with that.

The thing that I want people with Parkinson's to be aware of is that that doesn't actually work for everybody. In fact, that formula was developed by a bunch of exercise studies with college students and maybe some young adults, grad students and stuff. They did up to people who are older age, but it's not the same. People with Parkinson's can have what we call a blunted heart rate response to exercise, regardless of being on any heart rate medications.

What I like to do is get somebody on a treadmill or on an exercise bike and have them start out at a really slow pace, and just gradually get faster or work harder and see what their heart rate does. Because if their heart rate doesn't go up, then saying you need to hit 100 beats per minute or 120 beats per minute won't work, and then the person feels like they're not doing it right.

If you've had an exercise stress test from your cardiologist, you can use that as your own maximum rate. You can take a percentage of that, like 50% of that is a great place to start normally. Some PTs will use a variety of different formulas, and you might start at 30% on one of the other formulas. I always recommend, especially if you're restarting, start low and work your way up.

I'll plug technology. There are so many commercially available technologies right now that can help you track your heart rate on your wrist to make it easy for you. You can do it on a walk and just see what your heart rate is when you're walking to the store or taking your dog for a walk. You might notice that, at rest, your heart rate is 70, and when you take a dog for a walk, it's 90. But when you go for an exercise walk, you're getting to 110. We just say, start by paying attention to what you're currently doing.

Dr. James Beck 00:58:18
Yeah. Heart rate monitors aren't necessarily very expensive. I've seen some more sophisticated ones can link to your phone, and then this gets to your point of the apps, one like Strava. I've got two kids, and if their exercise, if their bicycling, isn't on Strava, it's as if they hadn't actually done it. It's always very important for them because it's almost like a little world of social media, and you can comment on it.

I think that goes to your point. If we have family members who live afar, they can see what you've done, and they can comment and give you words of encouragement.

Miriam Rafferty 00:58:52
My mother-in-law congratulates me when I go for a walk. It's wonderful. It gives you that little like, oh yeah, I did go for a walk today.

Dr. James Beck 00:59:00
It is nice, and other people are aware what's going on. I know we're getting towards the top of the hour, but just a couple more questions, if I may. Some people are at different stages in their Parkinson's, and getting up and having mobility issues, even just getting out of a chair, can be hard. What would your advice be for them? Clearly, I think in those situations, seeing a physical therapist is probably the first stop, but are there things that they can do? Are there options for them to know ahead of time?

Miriam Rafferty 00:59:31
There are, and PT is obviously a great starting place. We recommend exercise bikes, and now they even make ones that you can buy for your home that can sit on the floor, kind of by a dining room chair, and you can do it from your home. Even somebody who we would say is very advanced in their Parkinson's disease can work on cycling, and that can get their heart rate up.

What's important then is you kind of have to motivate yourself, so you don't just go super slow. There are things you can do at home that are safe, and that's where, again, a PT can help you do that. They can help you find an exercise class that might be a chair-based class that works on strength and flexibility. There are a lot of options out there.

Dr. James Beck 01:00:11
That's fantastic. Thinking again about the mobility issues, someone commented that they were having surgery on a foot coming up. That was one of the things you flagged: how do you get people carrying through from a point where they're not able to exercise like they should or they would like to because they're sick, or have a cold or flu, or had a surgery? What's the best way to get them back? Is there a lightweight exercise they can do? Is this, again, seeing a physical therapist for some of that transition type of exercises until they're able to do it on their own? What are your thoughts?

Miriam Rafferty 01:00:47
I love the idea of prehab, which is where you go see a Parkinson's PT before your foot surgery, get some baseline values and know where you're starting. They might be able to recommend, okay, you're going to be non-weight bearing for six weeks potentially. We are forcing deconditioning on you. But maybe some of those exercise videos on Fitness Fridays or seated exercises, just do something that's keeping you a little bit connected.

Our heart rate will go up pretty fast if we're doing repetitive, continuous arm exercise. Just keep your body moving in some way, even if it's less than you used to do. Then you can go back.

You might be seeing a foot PT. A lot of times, we divide and conquer. I am not good at treating somebody with a fracture, but I am great at treating Parkinson's disease. So just know when you go see your foot PT, they might kind of just ignore your Parkinson's disease. When your foot PT is done, it might be great to do that one or two visits with your Parkinson's PT to reset.

Dr. James Beck 01:01:51
Perfect. Excellent. Dr. Rafferty, I want to thank you again for your time. Excellent presentation. I will even put up the thank-you slide to make it official. It's been great having you here.

I want to give, before we go, just a couple of updates for everyone else. What we've done is, for this calendar year, we've had our fourth Expert Briefing. We originally had two more. Unfortunately, we had a date change, so we're going to have to postpone the one in October until May 10, and it'll be part of our 2023 series. There will be some updates around that. I know some people may have already registered for that, but just a heads up that that has been postponed.

Our next and last Expert Briefing for this year will be on November 2 with Dr. Jim Leverenz, talking about dementia. Resources and support, the Foundation is a great resource. Dr. Rafferty mentioned some, calling our Helpline is one. We have a number of them online as well. The Aware in Care Kit, which is for those who may have to go to the hospital, is a fantastic tool to have. We have resources with our library, as well as our ongoing PD Health at Home program, which includes Fitness Fridays, appropriately. We have podcasts for those who like to listen to podcasts, which are, as I heard one person explain it to their grandmother, just like radio over your iPhone. So, think of it that way.

For our professionals, we have opportunities for professional education to get CEUs and other types of continuing education credits as necessary. Last but not least, I also want to recommend our PD GENEration study for those of you who may be interested in whether they may have a genetic form of Parkinson's disease. Genetic forms of PD are rare, but some individuals do have them, and I think the tide is changing, where there is an opportunity for more enrollments in clinical trials and potential therapies for those who may have genetic forms of Parkinson's.

Lastly, as I mentioned, we have our Helpline, 1-800-4PD-INFO. There's an email address if that's easier for you too rather than speaking, Helpline@Parkinson.org. Before you go, when this all closes and the webinar ends, there will be a survey that pops up. Please complete that survey. We really depend upon your feedback in order to understand how well we're doing. This is, again, part of including our community, and also an opportunity to share that feedback with Dr. Rafferty. She appreciates this, to know whether her presentation was heard and if there are any issues. As she talks to people with Parkinson's on a regular basis, your help is always appreciated.

With that, I'm going to end here. Thanks for everyone's time, and we'll talk again in November. Bye-bye.

Miriam Rafferty 01:04:49
Thank you all.

Dr. James Beck 00:00:00
Bringing a drug to market can take fifteen to thirty years, cost billions of dollars, and involve collaborations across many researchers and organizations.

Hi, I'm James Beck, Chief Scientific Officer of the Parkinson's Foundation. We know that research is an essential part of finding the cure for Parkinson's disease. But how can we speed up the process? If you've been part of our PD world for a while, you might have already noticed that launches of new Parkinson's medications are few and far between. The Parkinson's Foundation is working to accelerate PD drug breakthroughs through our new Venture Philanthropy Fund.

Venture philanthropy is when an organization invests directly in companies to inspire direct change that works toward achieving a larger philanthropic goal. Through venture philanthropy, the Parkinson's Foundation is directly funding cutting-edge Parkinson's disease therapeutic development being conducted by commercial organizations.

The Parkinson's Foundation works to solve Parkinson's disease by taking a big-picture approach to research and closing the gaps in knowledge about this disease.

While our annual research grants and our genetic study, PD GENEration, make progress toward understanding the biology of Parkinson's, there remains a shortage in the development of new drugs for Parkinson's itself.

Pursuing this critical research is often expensive and high risk. Bringing a drug to market can take fifteen to thirty years, cost billions of dollars, and involve collaborations across many researchers and organizations. Without continued investment in the development and creation of new medications, people with Parkinson's will likely have to continue to rely on carbidopa-levodopa, a therapy that is more than fifty years old and has significant limitations.

Our Venture Philanthropy Fund works to accelerate the breakthroughs and treatments that people with Parkinson's disease need today.

Our goal is to provide targeted funding to biotech companies looking to develop new therapies to treat and ultimately cure Parkinson's disease. Our strategy is simply to accelerate innovative Parkinson's research to drive advancements toward new and better therapies.

Dr. James Beck 00:02:06
Parkinson's research is underfunded. In recent years, several large pharmaceutical companies have exited the neuroscience space, usually following the failure of a specific therapy in clinical trials.

Smaller biotech companies are active but often do not have the funding necessary to propel early-stage development. This leads to a funding gap in Parkinson's research, leaving potentially promising therapies to languish.

We will work to course-correct the systemic lack of funding through our targeted venture philanthropy efforts. We also hope that funding this new type of research will help the global PD research community better understand this disease.

In 2022, we formed a strategic partnership with Parkinson's UK to boost investments in groundbreaking research. Over the next three years, the Parkinson's Foundation will invest a minimum of $3 million into the Parkinson's Virtual Biotech, the drug development collaboration between the Parkinson's Foundation and Parkinson's UK. This investment will accelerate research into scientific breakthroughs that have the greatest potential to become life-changing medications.

Currently, the Parkinson's Virtual Biotech is fast-tracking nine promising projects in Parkinson's research. One of these projects tests the effectiveness of an antipsychotic drug to manage hallucinations, a symptom that up to seventy-five percent of people with Parkinson's may experience.

Another project is studying possible therapies to restore mitochondrial function in the brain, which can help slow or maybe even stop Parkinson's disease.

The Venture Philanthropy Fund is part of the Parkinson's Foundation's Reach Further campaign. This four-year campaign will raise $20 million to accelerate new treatments and investigate early-stage drug discovery and development.

Find out how you can help support the Parkinson's Foundation Venture Philanthropy Fund at Parkinson.org/venturephilanthropy.

Dr. Andrew Feigin is a Movement Disorders neurologist and Professor of Neurology at NYU Langone Health where he is the Director the Marlene and Paolo Fresco Institute for Parkinson’s and Movement Disorders. He has been involved in clinical research for Parkinson’s disease and related disorders for more than 25 years, and he has been a site principal investigator on more than 30 National Institute of Health and industry-sponsored clinical trials of new treatments for Parkinson’s disease (PD) and Huntington’s disease (HD). In addition, Dr. Feigin has had leadership roles as PI or co-PI in several early phase clinical trials and advanced multicenter clinical trials, including gene therapy trials for PD. Dr. Feigin’s independent research has focused on the use of state-of-the-art imaging methods to elucidate the mechanisms underlying current therapies for PD and HD. In addition to his research interests, Dr. Feigin has remained a committed and busy clinician caring for patients with PD, and related movement disorders.

Dan Keller 00:08
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.

Our last episode with Dr. Joe Quinn of the Oregon Health and Science University, a Parkinson's Foundation Center of Excellence, focused on hallucinations and how to treat them. Today, we continue the discussion of sensory misperceptions in Parkinson's disease.

Hallucinations, illusions, and delusions can all occur in people with PD, especially in the advanced stages of the disease. They can interfere with your everyday activities, and they might be scary, but they are treatable with coping strategies and medication adjustments, so it's important to talk about them. If you experience them, there is even a new medication on the market that may help.

Dr. Martha Nance is the director of the Parkinson's Foundation Center of Excellence at the Struthers Parkinson's Center in Minneapolis. She identifies four questions for you and your healthcare team to think about when figuring out the best way to manage hallucinations. And she says, while hallucinations may affect any of the senses, most often they are visual.

Dr. Martha Nance 01:53
So people will see things that aren't really there. Often it's people or animals. People with Parkinson's can also have things that are sort of a variation on the theme of hallucinations, something that we might call an illusion.

The classical illusion would be a mailbox that looks a little bit like a short person. And a more disturbing kind of false experience that a person with Parkinson's can have is a delusion, sort of a false belief, the sense that somebody's spying on them, or that there's infidelity on the part of a spouse.

Dan Keller 02:27
So the main ones are visual, but they can also have auditory paresthesias. Those also?

Dr. Martha Nance 02:33
Yeah. So as I said, commonly, interestingly, it's visual symptoms, but some patients will have a feeling of things crawling on the skin.

I had one patient who had a funny taste in their mouth that would come on at certain times of the day, and she was also convinced that somebody was trying to poison her because of this funny taste that she would have. So it was accompanied by this sort of paranoid or suspicious thought.

Dan Keller 02:57
Possibly for good reason if you're having a taste that you didn't induce. Are the hallucinations mainly from the drugs to treat Parkinson's, or does the disease itself involve them?

Dr. Martha Nance 03:09
It can really be a combination of both. What's interesting is that most people with Parkinson's don't develop hallucinations until a number of years into their course—10 years, 12 years, or even more.

If hallucinations begin right at the beginning of the disease course, right at the onset of the motor symptoms, we actually use a different name for that. We call that Lewy body disease.

So in people with more typical Parkinson's disease, hallucinations develop later on, probably partly due to the total brain injury or the effects of Parkinson's disease on the parts of the brain that create these images or create our perceptions.

But all Parkinson's pills—all of the pills that we use to treat the motor symptoms—will tend to promote hallucinations, so it's often a combination of both.

Dan Keller 04:03
Is it worthwhile trying to separate out the origin, or it doesn't matter whether it's the disease or the drugs? At least the drugs you might be able to modify, I would think.

Dr. Martha Nance 04:12
Sure. So the obvious question: how do you treat a hallucination?

The first thing that the neurologist would think of is to cut back on any unneeded medications that might be contributing to the problem. Of all of our Parkinson's pills, levodopa is probably the most effective at treating the motor symptoms and may be somewhat less likely to trigger hallucinations, whereas some of the other drugs, such as amantadine or the MAO inhibitors like selegiline or rasagiline, or the dopamine agonists, are somewhat more likely to promote hallucinations.

So sometimes the best treatment for a hallucination is to cut back on some of the Parkinson's medicine.

Dan Keller 04:56
Do people tolerate that well? Do they then have more motor symptoms?

Dr. Martha Nance 05:00
Yes, it depends on the patient, and I often talk about prioritizing the symptoms.

I think most people, if they had to make a choice between moving a little bit less well but having a clearer understanding of the world around them versus being able to move a little bit better but seeing strange people in the room, would rather be more clear-headed and put up with a little bit worse movement.

Plus, sometimes people are on medications that they've been on for 10 or 15 years, and as the disease progresses, they then add other medications on top of that. It may be that the other medication that was added is doing 98% of the work, and that medication you started 15 years ago, you don't even notice if it's not there anymore.

So sometimes you really can get away with taking away or at least reducing the dose of one or another of the Parkinson's meds.

Dan Keller 05:56
Besides changing medications or doses, are there coping mechanisms? Can people deal with them even if they're having hallucinations?

Dr. Martha Nance 06:04
Sure, as with every other aspect of Parkinson's disease, the details are critical, and I think there are four questions in particular to sort of ask or think about as you're understanding hallucinations.

One is whether the hallucinations are occurring at a certain time of day, or is it all day long? Well, we all hallucinate at night—we just call it dreams—and so I leave a little more latitude for people to have funny experiences during the night. Sometimes people will have a pattern where the hallucinations escalate in the evening, and other people will have hallucinations all day long; that might make a difference in how you treat it.

Are the things that you're experiencing close by here in this room—the strange man standing in the corner—or is it some kids outside across the street with balloons that other people don't think are there? Things that are here in the room are inherently more threatening than something across the street.

Number three is, are the things nice things, or are they scary things? I sometimes keep a little puppy dog in my office—you can't see him, but I kind of like having him there. He keeps me company. He's my pretend friend, and I like him. But six men with knives standing in the corner, and one of them under the bed—that’s when I’m calling the police.

And the fourth thing is whether the person experiencing these things knows that they’re not real. Insight makes a big difference.

Dan Keller 08:09
So what do you advise patients or their care partners to do about this?

Dr. Martha Nance 08:14
Absolutely, the number one thing is to talk about it. Patients and their caregivers are often afraid to mention it to the doctor because they’re afraid the doctor is going to think they’re crazy, but this can be part of the disease or the treatment—and it’s treatable.

If reducing medications doesn’t help, or reassurance doesn’t help, there are medications that we use to treat hallucinations. These are typically antipsychotic or neuroleptic medications.

Most of them work by blocking dopamine, which can worsen Parkinson’s motor symptoms. So we’ve always had to balance treating hallucinations without worsening movement.

A newer drug, approved in 2016, works differently—it targets serotonin instead of dopamine. That drug is pimavanserin, specifically developed for Parkinson’s-related hallucinations.

Dan Keller 10:05
Do you have experience with it? How well does it work in the real world?

Dr. Martha Nance 10:07
I have a very small experience with the drug because it’s fairly new, and like all drugs, it’s not perfect. It can have side effects.

It may take time to work, and symptoms may not go away completely, but they may become less severe or less threatening.

Dan Keller 10:53
Any final words or advice?

Dr. Martha Nance 10:55
It’s very important for people to feel comfortable talking about this with their doctor. It is a treatable problem, and addressing it can really improve quality of life.

Dan Keller 11:18
Sure. Very good. Thank you.

Dan Keller 11:29
Hallucinations are a hot topic these days, and the Parkinson’s Foundation has many free resources to help you learn more.

If you didn’t listen to our previous episode yet, start there at parkinson.org/podcast. The episode is called Do You See What I See?

You can also read our book Psychosis at parkinson.org/books or call our helpline at 1-800-4PD-INFO.

Our PD information specialists can guide you to resources, webinars, and care providers experienced in managing hallucinations.

For questions or feedback, visit parkinson.org/feedback.

Our mission is to help every person with Parkinson’s live the best possible life. New episodes are released every other week.

For more information, visit parkinson.org or call 1-800-473-4063.

Thank you for listening.

Dr. Nance graduated from Yale University and the Medical College of Virginia and completed training in Neurology and in Clinical Genetics at the University of Minnesota. She has been the Medical Director of Struthers Parkinson’s Center, a Parkinson's Foundation Center of Excellence, since 2000, and also directs the Huntington’s Disease Center of Excellence at Hennepin County Medical Center. She has been involved in clinical research in Parkinson’s disease and Huntington’s disease for many years, and has written or edited a number of clinical guides for patients and caregivers on ataxia and Huntington’s disease. She is thinking it is time to write her clinical guide to Parkinson’s disease, but is waiting for a spare moment between patients to set pen to paper!

Dan Keller 00:08
Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. A hallucination is something you see, hear, smell, taste, or feel that is not actually there. Until recently, this was not a well-known or talked about symptom of Parkinson's. Many people didn't know hallucinations and delusions could be part of PD, and healthcare providers did not usually bring it up early in the disease course. For people with Parkinson's, a good understanding of all possible symptoms and your risk can help you manage the disease and be an active participant in your care. The Parkinson's Foundation has done research on hallucinations in PD. The Parkinson's Outcomes Project is the largest clinical study of Parkinson's, with more than 10,000 patients enrolled. Data from this study show that about 20% of all people with PD will experience some form of hallucinations or delusions. This number increases the longer you live with the disease. About 70% of people who have lived with PD for 20 years or more experience these symptoms. People may see or hear things that are not there or may have other sensory disturbances. This can limit day-to-day activities and can sometimes cause significant distress as Parkinson's advances and more medications are needed to treat it. Managing hallucinations can become a balancing act. In some cases, lessening dopaminergic medication can help control hallucinations, but you want to make sure movement symptoms are still well controlled. In other cases, specific antipsychotic drugs are needed. I spoke with Dr. Joseph Quinn of the Oregon Health and Science University, a Parkinson's Foundation Center of Excellence, about the scope of the problem of hallucinations in Parkinson's and ways to deal with it. How big a problem are hallucinations in Parkinson's disease?

Dr. Joseph Quinn 02:45
There are really a big problem, particularly as the disease advances and as people need to be on higher doses of medications. By hallucinations, we're talking about seeing things that are not there, hearing things that are not there, although the visual hallucinations are the most common. They really are promoted by the medicines that are used to treat Parkinson's disease. Once the doses get up high enough, then people actually start to experience these usually visual phenomena. And in the beginning, they're mild and easy to distinguish from reality, and they're not particularly distressing to patients, but over time, they can become more distressing, and then they really become a real difficult management problem. Because the first instinct, and the first appropriate instinct, is to try to reduce the medication a little bit, and sometimes that will reduce the hallucinations, but at the cost of worsening the Parkinson's, and then you're in sort of a balancing act. Now there are medications that are designed in people without Parkinson's disease. They're designed to suppress hallucinations—antipsychotic medications. Those medicines have been around for a long time. The problem with those is that they suppress hallucinations, but they worsen Parkinson's. They can even make people without Parkinson's disease look like they have Parkinson's—they're that potent. So it's been a real conundrum for us for a long time, how to best manage this drug-induced problem in our patients with Parkinson's disease.

Dan Keller 04:14
If they become more troublesome as the disease progresses, does that mean they become more frequent or more severe, and then people have a harder time distinguishing reality from hallucination?

Dr. Joseph Quinn 04:26
It's all of the above. They become more frequent to the point where they're occurring on a daily basis. They become more severe in that they're more vivid, and they become more distressing because people have a harder time distinguishing these hallucinations from reality. It's at that point that I think everyone agrees we need to treat the patient. If it's distressing to the patient, we need to do something about it. Until recently, our options were really to reduce Parkinson's medicines or try antipsychotic medicines that were our best alternatives, but that were imperfect in many ways. That is, in some cases, they had sedating side effects. We chose the antipsychotic medications that were available that had the lowest risk of making Parkinson's worse. They still had other problems. So you either had to deal with a lot of sedation and actually a terribly effective antipsychotic effect, or people had to have very frequent monitoring for bad side effects, and by that I mean weekly blood tests to be on this one type of medicine. It's actually effective for hallucinations, but it's burdensome for the patient to have to get their blood tested every week before they can get their prescription for the week. So until recently, it's been a problem without a great alternative for us.

Dan Keller 05:43
You said up till now, so is the implication that something better has come along?

Dr. Joseph Quinn 05:47
Yeah, so a new class of medicine has come along. A new medicine was approved just a few months ago, and this new medicine, first of all, has been tested specifically in hallucinations—psychosis in Parkinson's disease—rather than in schizophrenia or some other disease and then sort of transferred over to Parkinson's disease. And what's more, this new medication does not have any direct effect on dopamine, which I think most of the listeners know is the key chemical in Parkinson's disease. We're trying to boost levels of dopamine to reduce the Parkinson's symptoms. Most of the traditional antipsychotic medications work by suppressing dopamine, so there's this dopamine battle going on when you're trying to balance between Parkinson's symptoms and hallucinations. This new medication works on a different neurotransmitter. It works on something different than dopamine, so it is able to achieve an effect on hallucinations without worsening Parkinsonism.

Dan Keller 06:45
And this new medication is pimavanserin.

Dr. Joseph Quinn 06:48
Yeah, that's right. Pimavanserin is the generic name for it.

Dan Keller 06:52
How effective is it, and does it have any downsides?

Dr. Joseph Quinn 06:54
My personal experience with it so far has been limited because it's just been available for several months now, so I haven't developed a great personal feel for how well it works. In the clinical trials, which were done according to the gold standard—double-blind, placebo-controlled trials—pimavanserin did reduce psychotic symptoms in the target population, people with Parkinson's disease with hallucinations, without worsening their motor scores, their tremor, and their slowness and all those sorts of things. There is some concern about side effects that are somewhat similar to the traditional antipsychotics in terms of some EKG changes and that sort of thing. So there is some routine monitoring that's done, and there's some concern about combination with some other medications. But really, in the scheme of things, when we think about prescription medicines in general, what we've seen from the clinical trials is not showing us a huge downside.

Dan Keller 07:54
Does it look like the mechanism or the pathway that this acts on will open up the field to more drugs like it, or pursuit of similar things?

Dr. Joseph Quinn 08:04
Yes, yeah, that's an excellent point to make. That's one of the, I think, exciting things. It's, of course, exciting just to have a new alternative that has fewer side effects. But the fact that this helps to point us in the direction of a new mechanism for treating this troublesome side effect without aggravating Parkinson's is a very real possibility, and I'm sure that a number of drug companies are already at work trying to make similar and maybe even better compounds than this one.

Dan Keller 08:29
How much do hallucinations limit what people can do? I would think that even if they're mild, maybe you don't want to be driving because you might see something pop up in the road.

Dr. Joseph Quinn 08:39
That's a good point, that even mild hallucinations can interfere with some functions like you described. And I think clinicians vary a little bit in how aggressively they feel that they have to treat the hallucinations. Some movement disorder specialists feel strongly that even the mild hallucinations need to be addressed before they turn into something more problematic. So the hallucinations, as you point out, even when they're not obviously distressing to the patients, can interfere with function. But the challenge that we've had in the past is not necessarily the hallucinations that end up limiting the patients; you have to back off on the other drugs, and then the patient's Parkinson's can become so severe that you just can't get the patients to a good level of day-to-day functioning.

Dan Keller 09:19
This is one thing that may come up as the disease progresses and people are on medication longer. Do you have an opinion about informing patients when they're first diagnosed and first are treated, what's coming along, or is it better to do it in a stepwise fashion over the course of the disease?

Dr. Joseph Quinn 09:37
That's a great question, and there's no right or wrong answer for it. I think the right answer is you do it sort of on a case-by-case basis. Anytime you start a drug that's got side effects, we are obligated to share the risk of side effects with the patients. And the way you share it, and the way you describe it, of course, is going to be tailored to the patient to some extent and to the clinical situation. But you know, I start talking about hallucinations relatively early on when I'm starting these medicines, let people know that this is a risk, but really at low doses, it's a low risk. I really don't expect it to happen when people are just on startup doses of dopaminergic medicines, but by introducing the idea early, then it becomes easier to talk about it as time goes on. That's probably how I manage informing people about most of these things. I don't feel compelled to give everyone the difficult news about the later stages of the illness when that's many, many years off, but I do tailor it to the situation. Some people want to know everything right up front, and if that's what they want to know, then I try to share with them the best I can. I don't start talking about late-stage complications the same day I give somebody a diagnosis.

Dan Keller 10:42
Anything interesting or important to add on the topic?

Dr. Joseph Quinn 10:47
Maybe I'll just make one other point about hallucinations. Hallucinations often occur in the context of declining cognitive abilities—not always, but that's often an accompaniment. So drugs that can help with cognitive function a little bit are another strategy for trying to reduce hallucinations a bit. And I'm talking about drugs like donepezil and rivastigmine. These are drugs that were originally developed for the treatment of Alzheimer's disease. They work on yet another neurotransmitter. But, you know, I think experienced movement disorder docs have observed that these drugs can actually help with hallucinations when they're in the milder phase. So it's an observation that's probably not as generally appreciated by general practitioners or even general neurologists. So that's another element to keep in mind when you're coping with the onset of hallucinations. Now that strategy is also being pushed a little further. That class of drugs had a limiting factor of upset stomach and nausea and that sort of thing, and now some strategies have been developed to improve the effect of the drugs on the chemical in the brain without doing the same thing in the stomach, so that way the desired effects in the brain can be achieved without an increase in the nausea. That new class of drugs has not been approved yet, but it's moving along in terms of development, in some cases in phase three studies.

Dan Keller 12:08
Very good. I appreciate it. Thanks.

Dan Keller 12:19
If you would like more information about hallucinations, please call our toll-free helpline at 1-800-4PD-INFO. Our PD information specialists can help you find healthcare professionals with experience in helping people deal with hallucinations, delusions, and other behaviors. The Parkinson's Foundation also has free resources on the topic. One of these resources is the book Psychosis, which you can order from one of our information specialists, or you can order the book online at parkinson.org/books. We're also hosting a webinar on hallucinations, delusions, and paranoia on February 27 at 1 PM Eastern Time. Ask the helpline for information or register online at parkinson.org/expertbriefings. Don't worry if you can't tune in at that time; all past Parkinson's Foundation webinars are available for viewing at parkinson.org/expertbriefings. 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 1-800-473-4636.

Dan Keller 14:08
Thank you for listening.

Dr. Quinn is a neurologist at Oregon Health and Science University and the Portland VA Medical Center, specializing in cognitive disorders and neurodegenerative disease. He became director of the Northwest VA Parkinson’s Disease Research, Education, and Clinical Care Center (PADRECC) in 2010, and director of the OHSU Parkinson’s Center in 2013. He also serves the Oregon Alzheimer’s Disease Center as Director of the Biomarker Core.

Dr. Quinn's overall research focus is on developing strategies for treating and preventing cognitive decline and dementia in individuals at risk, including patients with Parkinson’s disease. Specific research projects range from animal studies testing experimental agents in the preclinical setting, to small clinical studies using biomarkers, to large multi-center clinical trials of experimental strategies. Currently funded studies include preclinical studies of copper-modulating strategies for improving cognitive function, a clinical study of CSF microRNAs as biomarkers of neurodegenerative disease, and clinical studies of nutritional strategies for preventing cognitive decline, including omega 3 fatty acids and vitamin D.

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.

Many people with Parkinson's disease will have problems swallowing, which is understandable given that Parkinson's is a movement disorder, and swallowing involves the coordinated movement of muscles in the mouth, throat, and into the stomach. This may lead to drooling, having trouble eating certain foods or drinking liquids, and may even cause food or liquids to enter the airway instead of going to the stomach. Problems such as weight loss, coughing, choking, or lung infections can result.

The medical professional who is trained and best equipped to deal with these problems is the speech-language pathologist. Besides working on speech, language, and communication problems, they are experts at evaluating and diagnosing swallowing difficulties and providing training and education to people with PD and care partners about ways to best manage these problems. I spoke with speech-language pathologist Yael Manor of the Tel Aviv Medical Center in Israel about evaluating people with PD, diagnosing dysphagia, and some techniques to lessen swallowing difficulties. People hear the technical term dysphagia. What does that mean to the layperson?

Yael Manor 2:04

Dysphagia is swallowing disorders, swallowing disturbances, and it occurs between 90 to 100% of the Parkinson's disease population.

Dan Keller 2:16

What are some of the early signs of swallowing difficulties that people should be aware of?

Yael Manor 2:21

One of the early signs is difficulty to swallow medications, some drooling, and then there are more advanced signs like coughing when drinking, coughing when eating, problem to chew food, or even choking, and the worst sign is aspiration pneumonia.

Dan Keller 2:41

Why is it important to detect and remediate these kinds of problems early?

Yael Manor 2:47

It is very important and very crucial to detect swallowing disturbances early as possible, because first of all, patients need to be educated about the signs and be ready to get an early treatment. Otherwise, they can develop some complications, such as weight loss, hospitalization, dehydration, and even social isolation. When people have swallowing problems, they don't like to eat in front of, you know, other people. So then they become depressed and stay at home, and in this way they decrease of quality of life. So we would like to see the patient as early as possible, and to give them the tools that are going to help them to swallow safely.

Dan Keller 3:32

So, if there is some indication of a swallowing difficulty or disturbance, how do you evaluate that person?

Yael Manor 3:39

First of all, the easiest way, there is a swallowing disturbances questionnaire. It's a screening tool, and it's not evaluation, but it can help us to detect which patient should go to have full swallowing evaluation or not. So it calls Swallowing Disturbances Questionnaire. Now, if a patient gets a score of 11 and above, so then we refer him to a full bedside evaluation by a speech therapist, and then one of the recommendations by the speech pathologist could be refer the patients to instrumentation evaluation, which could be videofluoroscopy, which is like roentgen in motion, X-ray in motion. Or another kind of instrumentation is called FEES, which stands for Fiberoptic Endoscopic Evaluation of Swallowing, and it can be done either by ENT and speech pathologist or just by speech pathologists in United States, where a scope inserted in the patient's nose, and then we can view the swallowing mechanism and see what's happening to the food or liquids while the patient is swallowing. So these are the three kinds of swallowing evaluations.

Dan Keller 4:50

Is that sort of an advanced kind of procedure? Not everyone would need that, would they?

Yael Manor 4:56

No, usually we start at bedside evaluations, that is done by the speech pathologist, and then after the evaluation, then she gives recommendations for any kind of swallowing tips and therapy, but also she can refer the patient to do instrumentation evaluation. It depends on the severity of the swallowing problem of the patient.

Dan Keller 5:20

So, if problems are detected, what would be the goal of therapy?

Yael Manor 5:24

Okay, first of all, we want the patient to swallow safely and be able to have enough calories to live. The common problem is like getting food or liquid into the trachea, and we want to eliminate this. This calls aspiration. So, according to the bedside evaluations, we write down some recommendations to the patients. For example, if the patient coughs while you swallow a liquid, so we can tell the patient to drink while he's doing chin tuck, he's getting his chin down and swallow with his head down the thin liquid. Or another technique is where we thicken the liquid into a thickened consistency, so then it would be easier for the patient and safer for the patient to swallow.

Dan Keller 6:15

What are some of the consequences of what we would say food going down the wrong way, going into the trachea?

Yael Manor 6:22

So then could be increasing mucus, some breathing difficulties, and the worst thing is aspiration pneumonia, which we know that 54% of patients who develop aspiration pneumonia die due to this.

Dan Keller 7:34

So that's actually causing an infection in the lungs.

Yael Manor 6:41

Exactly.

Dan Keller 6:42

Besides these techniques for swallowing liquids and thickened liquids, are there other techniques or tools that can help these people?

Yael Manor 6:53

Yeah, usually interventions we work on like three areas. We work on different consistencies, okay? So sometimes, as I said, thickening the liquid or getting the food, like blenderized food, when the patient had a problem to chew the food or to swallow the food. So this would be one area.

The second area is we work on, like posture, as I said, like chin down, or sometimes leaning their head to one side or the other, swallow this way. Again, it depends on the problem.

And the third area is swallowing compensatory techniques, where we ask the patient to swallow in a certain way. I'll give you an example: like if the food gets stuck in the patient's throat because the muscles are weak, and we're afraid that the food that got stuck there get into the trachea, so we would ask the patient to make like forceful swallow or double forceful swallow, so the patients will swallow twice and then will cough, it's like clearing his throat and swallow again. So in this way, the swallowing become like more safe, like a safe way to swallow the chewable food.

Dan Keller 8:04

Do these techniques continue to work, or as the disease progresses, do they start to have less effect?

Yael Manor 8:11

It depends on how the patients really comply with the exercises and the techniques, and of course, for this you need cognition. So, my suggestion is always to start as early as possible, so in this way it becomes more automatic, so then the patient can get used to swallow in this way. But as the disease progresses, sometimes it's more difficult for them to follow the instructions and remember how to swallow, and it gets frustrating. Definitely.

Dan Keller 8:41

Have we missed anything important or anything interesting to add?

Yael Manor 8:45

The most important thing, as I said before, and I will stress it, is to make the patients, the caregivers, be aware of the swallowing problem, the importance of early detection as early as possible, in order to provide early interventions, and to eliminate all these complications.

Dan Keller 9:03

Very good. Thank you.

As Dr. Manor advised, it is better to be evaluated for swallowing problems early on, and it's not too early to see a speech-language pathologist as soon as you are diagnosed with Parkinson's, even before you experience swallowing difficulties. That way, you can implement behavioral strategies and learn swallowing exercises that may delay or prevent problems later by protecting your airway and improving the efficiency of swallowing.

To learn more about speech and swallowing with PD, and what can be done to alleviate these challenges, please visit parkinson.org/swallowing and parkinson.org/dysphagia, that's d-y-s-p-h-a-g-i-a. You can also tune in to podcast episode 47 of this series, which talks about swallowing issues and oral care with Parkinson's. To download or order our free publication covering the topic, titled Speech and Swallowing: A Body Guide to Parkinson's Disease, please visit parkinson.org/store. You can find more articles and frequently asked questions about swallowing and feeding by searching the website of the American Speech-Language-Hearing Association at asha.org.

And of course, our PD Information Specialists can answer questions and provide information in English or Spanish about today's topic or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. To receive news and updates about future events and resources, you can opt into our email list at the bottom of our website's homepage. If you have questions or want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback, or if you prefer, email us at podcast@parkinson.org.

If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. This episode is supported by a grant from Genentech, a member of the Roche Group. Thank you for listening.

Dr. Yael Manor, (Israel) is a certified speech language pathologist and the multi-disciplinary team coordinator in the Movement Disorders Unit (MDU) at Tel Aviv Medical Center. In addition to her direct patient care, Dr. Manor is a lecturer and student clinical supervisor in an externship program at Ono Academic college, communication sciences and disorders department.

Dr. Manor investigated the efficacy of an innovative swallowing therapy approach: The Video Assisted Swallowing Therapy (VAST) with PD patients with swallowing disturbances. She specializes in speech, voice and swallowing disorders of neurological impaired patients.

Dr. Manor’s work has increased substantially the awareness of early evaluation and treatment of swallowing disorders of patients with swallowing disturbances. In addition, she developed the Swallowing Disturbance Questionnaire (SDQ).

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.

Anxiety and depression are common non-motor symptoms of Parkinson's disease. They are not only a reaction to the disease, but are also related to changes in the chemistry of the brain. The Parkinson's Outcomes Project, which has tracked more than 13,000 people with PD for more than 10 years, has found that as many as 40% of people with PD will experience some form of anxiety. While some worry is natural when a person has a chronic disease, I asked clinical psychologist Dr. Roseanne Dobkin about when an appropriate level of worry becomes the mental health condition of anxiety.

Dr. Roseanne Dobkin 1:27

That's a really great question. You know, as a clinical psychologist, I think it's important for us to embrace our emotions, because they're important and they tell us something. So, they're going to be certain circumstances in life where feeling a little bit anxious or nervous or worried is quite appropriate. Those feelings cross the threshold into problematic when they become all-consuming, when the feelings, the negative feelings, start to occur more of the time versus not, when they start to become incredibly distressing, when they start to interfere with day-to-day life and activities.

Dan Keller 2:01

How common is anxiety across the course of having Parkinson's disease?

Dr. Roseanne Dobkin 2:07

Anxiety is one of the most common non-motor symptoms that we see in Parkinson's disease. Published estimates suggest that about 30% of people living with Parkinson's will experience anxiety at some point during the course of the medical condition. In my experience, I think the 30% is definitely an underestimate, because there are so many folks with Parkinson's who have anxiety that goes undetected and untreated. So, if I had to put a number on it, I would probably put it somewhere between 50 and 60%.

Dan Keller 2:42

Is it really just a reaction to having a disease, or is there something going on in the brain which facilitates or exacerbates anxiety?

Dr. Roseanne Dobkin 2:52

So, the short answer to that question is yes, all of the above. You know, in general, it's a complicated mix of neurochemical factors, many of which are inherent in the disease process, plus all of the challenges that go hand-in-hand, living day in and day out with Parkinson's, and a lot of the limitations and difficulties that it causes for people and their families.

Dan Keller 3:14

Do depression and anxiety coexist? And if they do, how do you tell the difference?

Dr. Roseanne Dobkin 3:20

That's a great question that I get in the clinic all of the time. Depression and anxiety very commonly co-occur, and oftentimes folks are pretty confused trying to figure out, you know, what exactly am I feeling, and what type of symptom might it be most helpful to report to my doctor. And while there's a lot of overlap, I think the easiest way to distinguish them, if we're trying to separate the emotions, is that depression is characterized primarily by feelings of sadness, loss of enjoyment, loss of interest in things that one traditionally really likes to do, whereas anxiety is characterized more by worry, nervousness, apprehension.

Both of these conditions are associated with a lot of negative thoughts and unhealthy thinking patterns. In the case of depression, the negative thoughts tend to center on the self, the world, the future. So, somebody who is depressed might think, "I'm not good enough," or "My future is bleak." A person who's having a lot of anxiety-provoking thoughts tends to focus on worst possible case scenario, tends to overestimate the likelihood of bad outcome. So, an anxiety-provoking thought might sound more like, "Oh, nobody at the party will talk to me, my symptoms make my friends very uncomfortable, so it's safer for me to just stay home."

Dan Keller 4:39

What forms does anxiety take? What do people do?

Dr. Roseanne Dobkin 4:43

So anxiety presents in very, very different ways. You know, the phrase, "If you've met one person with Parkinson's disease, you've met one person with Parkinson's disease," it applies with anxiety just like all other manifestations of the medical condition. Anxiety could present cognitively in the form of excessive worry and rumination about day-to-day events. It could present physiologically in terms of increased feelings of physical tension, rapid heart rate, difficulty breathing, feeling dizzy. It could present emotionally in terms of inner feelings of angst or extreme discomfort, and it can also present behaviorally in terms of avoidance and withdrawal, and that's something that I really want to draw people's attention to.

I can't tell you how many times be meeting individual for the first time, and I'll be asking them about their mood, and if they're worried or nervous, and they'll say, "Oh, no, Dr. Dobkin, I'm cool as a cucumber. Nothing bothers me." But the more I learn about their history, and the more I learn about their day, nothing bothers them, because they don't leave the house, or they're in the basement all day, because they're avoiding exposure to any person, place, or thing that could possibly lead to them feeling uneasy. And when people start avoiding and withdrawing, it makes their world smaller and smaller, and that's not healthy in the long run.

Dan Keller 6:03

You describe some physiological responses to anxiety—rapid heart, and stress, and probably muscular tension, I would think. Can it have actual health consequences, physical health consequences, to be anxious?

Dr. Roseanne Dobkin 6:19

It can. Unfortunately, anxiety can have a detrimental impact on all aspects of physical health. It can exacerbate the presentation of Parkinson's disease symptoms, both physically and cognitively, and it can have a really negative impact on quality of life and family relationships.

Dan Keller 6:38

What kind of situations can provoke anxiety?

Dr. Roseanne Dobkin 6:43

Anything and everything. It's a very personalized phenomenon. So, for some people, it may be excessive worry about day-to-day things, like paying the bills, picking up food at the grocery store, finding a parking spot at the local church. For others, anxiety may be triggered by something very specific—being in public, speaking in front of a crowd, potentially concerns related to Parkinson's symptoms, be they physical, emotional, or cognitive. It's not uncommon for individuals with Parkinson's that I work with to share that they get very nervous around the time that they are expected to take their Parkinson's medication for fear that it might not kick in or that it might lead to side effects, so there can be a whole host of factors that can contribute to and can cause anxiety to hang around for a lot longer than we'd like it to.

Dan Keller 7:34

What are some of the treatment options?

Dr. Roseanne Dobkin 7:36

This is the really good news, is that we do have effective treatments, and medication, as well as an evidence-based type of psychotherapy called cognitive behavioral treatment, have both been shown to be effective in the general population, and there's some preliminary research that's showing that these types of treatments may also be very helpful for individuals living with Parkinson's disease. Medication is certainly something that would involve careful evaluation and discussion with the individual's physician and personal health care team. Cognitive behavioral therapy is something that could be accessed in the community from a licensed clinical psychologist like myself, or social worker, or a mental health counselor, and the really great thing about cognitive behavioral therapy is it arms people with tools, with coping skills that they can use to manage their stress and their anxiety as effectively as possible.

Dan Keller 8:33

Are they most effective when combined—cognitive behavioral therapy with some drugs, maybe for a short time, maybe a little longer?

Dr. Roseanne Dobkin 8:41

Ideal treatment selection, again, it really depends on the individual person and their unique history. As a rule of thumb, though, I usually suggest that if an individual is experiencing symptoms that are quite distressing and quite pervasive, and they're there more of the time than not, that they combine medication under doctor supervision with the cognitive behavioral therapy to get the quickest, most robust response.

Dan Keller 9:08

Is the goal to use the medication short term, hopefully give them those tools that will allow them to handle it themselves without the drugs?

Dr. Roseanne Dobkin 9:18

Again, it's really a case-by-case decision. Some people use medications like low-dose antidepressants to manage anxiety for very short period of time while they're learning the coping skills, and the coping skills carry them forward. Others find that they do best if they stay on a low dose of the medication for a longer period of time as they continue to learn healthier ways to deal with life challenges.

Dan Keller 9:41

What have we missed, or that's important or interesting to add?

Dr. Roseanne Dobkin 9:45

You know, I think one of the most important messages that I try to convey to all of the individuals that I work with who are dealing with Parkinson's and anxiety is that nobody with this medical condition had any choice in the diagnosis, but they have every choice in the coping response. And there are so many things that people can do today to reduce anxiety and to improve their quality of life—things like increasing exercise, finding some time to take some slow, deep breaths, maybe learning some meditations.

And the good news is, in the age of digital technology and the internet, there are a lot of free downloads that are high quality. So just googling, you know, mindfulness and meditation, and finding some three-to-five minute breathing exercises that an individual might like and could practice a couple times a day could be incredibly beneficial. And then, you know, as a cognitive therapist, you know, one of the main objectives for me when I'm sitting down and working with somebody one-on-one is to help them to learn to leave the judgment and the criticism at the door and to speak to themselves with the same kind, compassionate words that they would use when they're speaking to a friend, because negative thoughts can really fuel the fire when it comes to anxiety, and we really want to talk back to those negative thoughts and ultimately crush them like a bug.

Dan Keller 11:14

Great, thank you.

Dan Keller 11:24

Anxiety is a common non-movement symptom of Parkinson's disease, and recognition of it is the key to getting help. For an idea of what to look for, visit parkinson.org/anxiety. Here you'll find a list of common symptoms, along with an explanation of the psychological and biological factors underlying the condition, how it's diagnosed, and treatment options, including nonconventional ones. You can also find tips for living with anxiety, along with archived expert briefing webinars, when selecting the topic of anxiety at parkinson.org/library. In the same search, you can find a fact sheet titled "Stress Management for PD," which talks about some useful complementary techniques, such as yoga, tai chi, breathing exercises, and massage therapy.

Along these same lines, our free PD Health @ Home virtual educational and wellness programs continue online, including Mindfulness Mondays. You can register for upcoming ones or see past ones at parkinson.org/pdhealth. Podcasts 78 and 80 describe what mindfulness is and what it can do for you, and episode 38 talks about mood and coping.

As always, our PD Information Specialists can answer questions and provide information in English or Spanish about today's topics or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. To receive news and updates about future events and resources, you can opt into our email list at the bottom of our website's homepage. If you have questions or want to leave feedback on this podcast, or any other subject, you can do it at parkinson.org/feedback, or if you prefer, email us at podcast@parkinson.org.

If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. This episode is supported by a grant from Genentech, a member of the Roche group. Thank you for listening.

Roseanne Dobkin is a licensed clinical psychologist and Professor of Psychiatry at Rutgers University with a well-established clinical research program in the mental health aspects of Parkinson’s disease (PD).

Key objectives of her research program include 1) improving the recognition, assessment and treatment of the neuropsychiatric complications of PD, including cognition, depression, anxiety, and sleep, 2) advancing the understanding of the complex interaction between the motor and non-motor symptoms of PD and the influence of this interaction on course and progression of PD, and 3) utilizing applications of telemedicine to leverage access to informed mental health care for all members of the PD community. To date, her PD research has been funded by the National Institutes of Health, the Patterson Trust Awards Program in Clinical Research, the Michael J. Fox Foundation for Parkinson’s Research, the Parkinson’s Unity Walk, the Parkinson’s Foundation, and the Health Services Research and Development Division (HSR&D; Merit Award) of the Veteran Affairs Administration.