Crista Ellis 00:00:00
Hello and welcome to the Parkinson's Foundation's webinar on staying active as a veteran with Parkinson's. I'm Crista Ellis, your host for today's webinar. Helping me behind the scenes is my colleague Laura Cameron. Exercise and staying active are essential not only for physical health but also for mental and emotional well-being, especially as a veteran living with Parkinson's. This program will address how staying active can positively impact physical symptoms, your mood, and your overall health. We'll learn about the benefits of exercise, discover strategies to stay active beyond traditional workouts, and explore meaningful activities that bring joy and purpose.

Today's webinar and the entire Veterans Webinar Series is presented with support from the Dawn and Lorraine Freberg Foundation. We want to take this moment to thank the Freberg Foundation for helping to make these programs possible.

The mission of the Foundation is to make lives better for people with Parkinson's. Whether you are living with Parkinson's, caring for someone with Parkinson's, or working to end the disease, the Parkinson's Foundation is here to support you.

To achieve our mission, we pursue three goals: improve care for everyone with Parkinson's, advance research toward a cure, and empower and educate our global community. Today's program is a great example of one of the things we are doing to help us meet these goals.

The Parkinson's Foundation hosts weekly education and wellness programs through our PD Health @ Home virtual programming. You can join us for Mindfulness Mondays, Wellness Wednesdays, and Fitness Fridays. Most of the PD Health @ Home programs are recorded and posted on the Parkinson's Foundation's YouTube channel. You can scan the QR code on the screen to connect to that YouTube channel, or find out more and register to attend our live PD Health @ Home programs at Parkinson.org/PDHealth.

Part of the Foundation's commitment is to reach every person living with PD. A critical way we do that is through our partnerships. With more than 110,000 veterans living with Parkinson's disease, the Foundation is proud to have established a formal partnership with the Veterans Administration. This partnership has the overarching goal of improving the quality of life for veterans living with Parkinson's disease and their care partners through greater access to education, resources, and support. I'd like to invite you to visit our webpage and explore the resources offered by the Parkinson's Foundation that can support your navigation of living with Parkinson's as a veteran.

That website is Parkinson.org/Veterans.

Crista Ellis 00:02:45
I'm honored to introduce our first speaker, someone who brings both expertise and heart to her work supporting veterans living with Parkinson's. Please join me in welcoming Dr. Hillari Olson, a Doctor of Physical Therapy and a Registered Yoga Teacher. She holds certification in both LSVT BIG and PWR!Moves, two evidence-based approaches that help individuals with Parkinson's improve their mobility, function, and quality of life. Hillari serves as the Program Coordinator and Physical Therapist for the Parkinson's Disease and Movement Disorders Program at the Minneapolis VA Healthcare System, where she combines clinical skill with a passion for helping veterans live well with Parkinson's.

Hillari, thank you so much for joining us today.

Dr. Hillari Olson 00:03:27
You bet. Thank you, Crista, for that lovely introduction. I'm happy to be here with everyone. I'm going to go ahead and start sharing my slides here. Just give me one second.

All right. Hopefully that's coming through okay for you all.

Crista Ellis 00:03:50
Great.

Dr. Hillari Olson 00:03:51
Great, thank you.

I have the opportunity to chat with everyone a little bit about exercise and some of the background in exercise. You may have heard already many things about exercise and Parkinson's disease. Hopefully this will help to solidify your understanding of why exercise is so important in those living with Parkinson's disease. I just wanted to start off with a couple of definitions.

I find frequently in my practice with veterans with Parkinson's disease that oftentimes they're asking, what is the difference between physical activity and exercise? The bottom line is that exercise you can think of as something that's more structured, planned, and formal. You're setting out to do something like biking, swimming, or boxing that you're going to do for maybe a period of time with the end or intermediate goal of improving or maintaining your physical fitness.

On the other hand, physical activity is really any body movement that your body does that results in some type of energy expenditure. It can be walking around your house, doing household chores, participating in sports or leisure activities, and exercise is considered to be a subset of physical activity. Both are good and important, and we'll take both of them in any form. We'll learn a little bit about exercise today.

Why is it important for individuals with Parkinson's disease to exercise? One of the most important things about exercise is that it really helps to protect your brain. It promotes brain health, and it also helps to protect the structures within your brain. It protects those cells in the brain from damage, and there's actually no medication that does this. Additionally, it has benefits to multiple systems in the body.

If we think about our cardiopulmonary, or our heart and lung system, our muscles and our bones, our nerves and our muscles, and various other systems within the body, all can get benefits from exercise.

There are also studies that have shown that exercise can help to slow the disease process, can help to slow down Parkinson's disease. We need more studies that will look at exercise and its impact on this. But some preliminary studies have shown that higher intensity exercise potentially may be more beneficial than moderate or lower intensity exercise at helping with this. This is why it's great to encourage you to talk to your physical therapist, especially if you're able to see someone within the VA who works with veterans with Parkinson's disease, to determine a specific type of Parkinson's exercise program.

This really takes into account your own physical level of fitness, as well as things that you enjoy, things that are meaningful to you, because we know that helps promote adherence, meaning that you'll stick with it longer if it's something that you like to do. Helping you to work on exercise and goals is helpful at having you be successful in executing that exercise.

There are specific types of exercise that are recommended for Parkinson's disease, although there are a variety of different things that can be done.

Dr. Hillari Olson 00:07:28
I'll speak briefly about the Parkinson's Outcomes Project. This project was launched in 2009, and it's a seminal Parkinson's disease study that captures the experiences of people with Parkinson's disease and their care partners over time on a variety of topics. These topics include things like medication, treatment, exercise, and lifestyle measurements. This is the largest-ever clinical study of Parkinson's, and it's an ongoing study. If you're not participating in it and you desire to be, you can look at the Parkinson.org website for more information.

Looking at this Parkinson's Outcomes Project, by asking people with Parkinson's and their care partners about their experiences through this project, the Parkinson's Foundation identified some key clinical practices that can help improve quality of life for people with Parkinson's. I'm just going to focus on a couple of those today. One of them was early referral to physical therapy, preferably at diagnosis of Parkinson's disease. The other one is integrating exercise into treatment plans.

It's been shown that people who start exercising earlier experience a significantly slower decline in quality of life than those that start later on. The take-home message is that we want to see you as soon as possible, and we want to get you started on a lifetime exercise regimen. Really, it's going to overall be helpful for you and your overall quality of life. There are many studies on exercise and its benefits in Parkinson's disease.

One study that I selected here shows that aerobic exercise, so continuous exercise, helps to stabilize the progression of the disease and also enhances cognitive performance. This was the result of looking at MRI clinical and behavioral results from this study that was published in 2021.

Exercise has many benefits for everyone. The benefits of exercise in Parkinson's disease are numerous. I'll go through a number of different things that have been shown to be beneficial from exercise. In general, when we think about exercising, we get an increase in blood flow to both the working muscles as well as the brain. What we see then as a result of exercise is both improvements in physical and cognitive function.

An effect on both motor and non-motor symptoms is also seen in individuals with Parkinson's disease who participate in exercise, and this is a positive effect. We already talked a little bit about how some exercise has been shown to help slow the progression of Parkinson's disease. As I mentioned, it has an impact on cognitive symptoms, including things like memory, attention, and concentration. It also improves an individual's ability to learn, and we refer to this as neuroplasticity, or changes in the brain that occur.

As I mentioned too, we can help a number of different body systems as well with exercise. We can see a prevention of cardiovascular disease. We can see a slowing or a stopping of osteoporosis, and that's the thinning of the bone. We see a prevention of depression and other mood symptoms in folks who exercise. We see improvement in sleep, which is really important because that can affect our overall cognitive and physical function as well if we're not getting enough sleep.

Because we're able to move around, we see an impact on our bowel and bladder symptoms as well. We know that everything slows down in Parkinson's, including our bowel function. So in folks who exercise with Parkinson's, we see less constipation. We also see less fatigue. We see an improvement in motor function, so how fit people are physically, moving around, and things like walking and balance.

Lastly, we do see an impact on how the brain is able to take up or utilize the dopamine that individuals are taking. If you're taking your carbidopa-levodopa, we see an increase in the brain's ability to utilize that levodopa, and we also see improvement in the dopamine release or uptake within the brain itself. That can also translate to movements being easier, able to get around a little bit better, since we know that dopamine is responsible for so many things in the body, especially related to movement.

Dr. Hillari Olson 00:12:31
The infographic here on the left is something that was put out by the Parkinson's Foundation and the American College of Sports Medicine. This is a really great short summary document about what specific Parkinson's exercise recommendations are really advantageous for folks living with Parkinson's disease. As you can see here, there are a variety of different types of exercise that can be beneficial and are recommended for folks with Parkinson's disease. We'll talk through each of those different types of exercise.

Before we do that though, just a few things to consider when we're talking about individuals with Parkinson's disease participating in exercise. As we know, Parkinson's disease involves a loss of error detection signals in individuals that have this disease. What that means is that folks with Parkinson's don't necessarily know that they're moving slow or they're moving small. A lot of times, it's really helpful to have some type of external cue because of this. That could be a verbal cue. It could be me modeling some exercise and saying, do what I do.

It can be things like using music or a treadmill. There are lots of different ways that we can use external cues to make the type of exercise, or the exercise that the person with Parkinson's is performing, be more effective. The other thing to think about is we lose those larger movements in folks with Parkinson's disease. We want to make sure that we're emphasizing how big our movements are so that if we over-exaggerate or overshoot, we end up with kind of normal-looking movement during our exercise versus very small movements.

We're always going to keep in mind how big we're moving during exercise.

The other thing to keep in mind is the exercise intensity, and we'll talk about that a little bit as well. There are studies that suggest that higher intensity exercise is more beneficial than low intensity exercise. We'll keep that in mind as well. We'll talk to you about how you can utilize a subjective rating scale to be able to determine your intensity or exertion level while you're exercising.

It's recommended to try to exercise every day. Just like you take your Parkinson's medications, you should exercise every day as well. Some type of movement in the body is going to be good for helping with a number of different things. A lot of folks find that it also helps them just move easier, which in turn helps them to be more independent with things like taking care of themselves, getting dressed, taking a shower, and rolling over in bed. Think about really trying to incorporate the exercise into your daily routine. Konner will be talking to us a little bit about that in a few minutes.

Now we'll talk briefly about the different types of exercise that are recommended. If you were starting off, or let's say you were a regular exerciser already, you might consider looking at aerobic exercise. Maybe you do different types of exercise, but you want to get started, and you're wondering what type of exercise should I do first? It's recommended to start with aerobic, or sort of continuous, exercise. This is using major muscle groups, trying to accumulate at least 30 minutes a day. This can be broken down into 10-minute bouts of exercise as well. These are things like repetitive continuous exercise, like walking, running, biking, swimming, or maybe an exercise class.

A couple of things to keep in mind for this is if an individual with Parkinson's is maybe moderate to advanced Parkinson's and has some issues with freezing of gait, they may not use walking as much anymore as an effective form of exercise because maybe they're not able to get that exertion level up as high as they would if they were doing something where, say, their body weight was supported, like sitting on an exercise bike.

The other thing to keep in mind is that sometimes folks with Parkinson's have a delayed or maybe not as much of a heart rate response to exercise of this nature. That's another reason why we might look at a subjective rating scale to be able to determine intensity of exercise.

The last thing to consider is just blood pressure variability. One of the things that folks with Parkinson's can have is some blood pressure variability. We want to also just keep this in mind when we're selecting the type of exercise that we're doing. That's why working with your physical therapist who has some knowledge of Parkinson's disease is helpful at determining what exercise is going to be best for you.

Dr. Hillari Olson 00:17:46
Here's that subjective rating scale that I mentioned. This is just a brief overview. Essentially, this is a 10-point scale. We call this the modified rating of perceived exertion, or the modified Borg scale. Originally, when the original scale was developed, it was correlated with heart rate, so it has been found to be useful in determining intensity of exercise. Essentially, if we're exercising, or you're exercising and I'm trying to determine how hard you're working, I might just ask, how hard do you feel like you're working on this 10-point scale? Ten is the hardest you've ever worked. One is super light, like you're sitting and resting.

Ideally, we want our folks with Parkinson's to be working up into the six to eight out of 10 range. Obviously, this is based on a number of different factors, including what your current physical activity level is and your tolerance and response to exercise, so this can be variable. That's the ultimate goal. Think about keeping that in mind, or this scale in mind, while you're exercising.

Strength training is another great form of exercise that can be very helpful in folks with Parkinson's disease, specifically in regard to body mass composition and also in regard to building and keeping strong bones and muscles. If you think about each day, we need to be able to move our body against gravity in a variety of different positions. We really need to make sure that our muscles are effective at being able to do that for us. Even something as straightforward as getting up out of a chair, maybe without using your hands.

When we think about strength training, the recommendation is that we try to do this two to three days per week, approximately 30 minutes per day. The general recommendation is 10 to 15 repetitions for all major muscle groups. When we think about resistance, we can use a variety of things. You can use weights. You can use weighted objects that you might have around your house, like a water bottle or maybe a gallon of water or milk. Put it back in the fridge when you're done. You can use resistance bands that you can get from therapy or order online. Just really a variety of different things.

Probably the biggest thing that you can use that's readily available to you is your own body weight. We talk about moving your body weight against gravity in different positions. Thinking back to your boot camp days, when we're talking about things like push-ups or sit-ups, push-ups against gravity, you can use a variety of different ways to do that, like using a counter or using a wall. Getting up out of the chair is moving your body, doing some bodyweight squats. Different things like that can really be helpful at building strength.

Some considerations for strength training are rigidity or stiffness that you might feel in either the trunk or the extremities. That can be something that might impede your ability to maybe perform a full range of motion. Some warm-up exercises might be helpful for you before you get going on your resistance training. If you have trouble with balance, you want to make sure that you're working with your physical therapist to decide what position is going to be best to accomplish your exercise.

Maybe you do a standing stance and have support from a chair, or maybe you're able to do some strength training in sitting. There are a variety of different things. I mentioned before keeping in mind that we want to move through a full range of motion. That pulls in our amplitude, or how large we're moving, using whatever available range of motion we have so we get the most effective form of exercise.

This is just an example of something that you might think about doing for strength training that's really functional, meaning that it's something you probably are going to have to do anyway. Squatting or bending down, and then standing up and pressing up a weight over your head. That might be advanced for some folks. This might be right where you are, but we'll have a chance to try some exercises a little bit later on in the presentation as well.

Dr. Hillari Olson 00:22:13
Balance, agility, and multitasking. This is probably my favorite form of exercise for veterans with Parkinson's disease. In Minneapolis at the VA, we have a lot of different virtual exercise classes where we try to incorporate a lot of these different things. It's recommended to do these things two to three times per week or daily. This can involve things like stepping in different directions if you're practicing that standing, or if your balance is impaired, maybe even doing it sitting down. Shifting your weight side to side and front to back is really helpful for balance. Other different balance activities.

Then also trying to just do a variety of things maybe at the same time. One thing we know about Parkinson's is that some of our automatic functions get hard. If you think about walking as something that we typically do automatically and we don't have to think about it much, people with Parkinson's have to think about walking.

If on top of walking we're having a conversation, or we're having them do some counting, or we're having you maybe name some items in a category like your favorite NFL teams or types of fruit or vegetables, that's going to further challenge your brain's ability to be able to do that multitasking. Things like that can be really important to train and work on, and your therapist can work with you on that as well.

We want to make sure, just like all of the exercises, that we're finding the just-right challenge. If you're trying to do two things at once and it's resulting in maybe you losing your balance, or maybe the cost of one of those activities, so maybe your walking is getting slower or you're not able to accomplish one of the tasks successfully, that sometimes is a good indication that you might want to take out one of the tasks or change what you're doing.

One of the things that we can do in a Parkinson's-specific exercise class is we might do some shadowboxing, and we might count out loud using our loud voices. We can count by ones or twos or fives, different things like that, to really just engage both our brain and our body.

Stretching actually has a lower recommendation as far as evidence-based for performing in the Parkinson's population. It's not that it's not recommended. It's just that there's not super great evidence about doing this. I like to think about stretching more in regard to moving through a range of motion, which can be really important for people with Parkinson's. The recommendation for this is to do it two to three days per week to daily. I like to think about doing this as a complement or something else to do before or after some of the other forms of exercise.

Maybe you do some aerobic exercise or some strength training, and then maybe you do some dynamic or some more holding stretches. Perhaps maybe some type of yoga poses can sometimes be also considered stretching. Just thinking about things like that, where you can also incorporate some deep diaphragmatic, or belly, breathing. A lot of times this stretching is also really helpful for coming out of that rounded or flexed posture that's common in people with Parkinson's disease.

If you're stooped or slouched, sometimes working on stretching out the front part of the body can really be helpful at doing some retraining for that.

A couple of stretches here, thinking about stretching out through the side of the trunk, can be helpful, especially if you tend to have some trunk stiffness or rigidity. This modified child's pose here is shown on the floor, but you can also just hang on to a countertop or a table and drop your hips back. That can also feel like a nice stretch across the trunk and the low back. There are lots of modifications for all of these exercises.

Dr. Hillari Olson 00:26:38
Just a couple of tips for successful exercise participation, and this is really geared toward both veterans with Parkinson's disease, but also those family and friends who are working with them to help them be successful. Think about meeting yourself where you are. Considering what works best for you and your care partner is really going to maximize your success with exercise. For instance, if you are not actively exercising, instead of maybe starting off trying to bike 30 minutes at a time, you might work with your therapist on just increasing that activity level.

Maybe we start with taking breaks from sitting and moving your body for five minutes at the top of every hour. It's not a structured exercise, but we are trying to get you to be a little bit more active. Then as you can tolerate that activity level, we can build on that and transition to maybe more formal exercise.

Konner will talk about this next, but try to schedule it into your routine. I mentioned the parallel with taking your medications. Scheduling exercise at a time that feels right for your body, maybe after you've taken your medication, maybe you've had some breakfast, you're warmed up, it's kind of your better time of day. You're more likely to be successful than if you're scheduling it later on in the day when maybe you're not feeling as perky.

Thinking about using a form of external cueing, so having somebody coach or cue you through some exercises, using an exercise video, different things like that can be really helpful.

Focusing on aerobic exercise and task-specific exercise first, so things like getting up and down from a chair, and then that continuous exercise. Also just remembering that starting small and having those small successes can lead to really big changes. We're not looking for you to exercise just for three months and then be done. We're looking for this to be a lifelong habit, and that's really going to be most effective at helping you live your best life.

As far as how you get started with exercise, you can think about connecting with your VA physical therapist. If you're in the Midwest and you have access to the Minneapolis VA, that's a great place, or any of our VAs. For the most part, you can self-refer to physical therapy, so that's a great way to get started. The VA also has a Parkinson's system of care, the Parkinson's Disease Research, Education and Clinical Centers, which is called PADRECC as the acronym. The website is listed here. That has a variety of different resources for veterans and their care partners.

Then of course, the Parkinson's Foundation really has a lot of great resources. The thing that I like best about this is that if you're internet savvy, you can go online and search around the website, but you can also call this number and ask and say, "I am in the upper northeast corner of Minnesota. I'm wondering what type of exercise resources are available in my area." They can help you with that. That's a great way to find some community resources. I know Emily will also be sharing some additional resources later on today.

Lastly, just advocate to see a provider in neurology who specializes in movement disorders, and then request a referral to rehab services. Really, our therapists are designed to be able to keep you living your best life. Just make sure that you're advocating for yourself to be able to see those specialists who specialize in Parkinson's disease and movement disorders.

Dr. Hillari Olson 00:30:36
That is what I have. I'm going to go ahead and introduce our next presenter. Konner Kielman is the occupational therapist who works on my Parkinson's Disease and Movement Disorders team at the Minneapolis VA. He joined our team in 2023, so he's been with us for a couple of years now, and he's done an excellent job. He went to school at the University of South Dakota and did a specialty in neurologic occupational therapy. He also was a clinical trainee at the Minneapolis VA before he came to work for the Minneapolis VA.

Then he started off in primary care occupational therapy and moved to the Parkinson's disease team in 2023, as I mentioned. Konner is going to chat with us a little bit more about routine and self-care, and we will give the floor to him.

Konner Kielman 00:31:33
All right.

Thanks, Hillari. I don't know about everybody else, but whenever I hear those presentations, I feel like I've got to fix my posture. Even though my camera's muted, I feel like she can see me. I think everybody just take a good stretch, right? We've been sitting for a little bit. Let's move those shoulders around.

I think it'd be good to get started with what occupational therapy is. Very commonly, I would say that I have individuals come in and say, I don't know why I'm here today, to be honest with you. I don't work anymore. I'm retired, so I don't know why I'm seeing an occupational therapist. To clarify, I do not help you with your job, in most cases. Doesn't mean I can't, but typically I would say that that's not my forte. That's going to be more of your vocational rehab.

OT, if I break it down into the simplest form, is that we're focusing and working to maximize and maintain your independence, your home safety, and your overall quality of life. How we do that is that we collaborate not just with therapies. I have therapies listed here, but also with neuro rehab providers, with your neurologists, with primary care, kind of anybody who might be on your medical team. We collaborate to develop and establish routines. For example, if I have a patient that I'm working with and he's seeing Hillari and myself, Hillari would explain to me the exercises that she's hoping for this gentleman to do, the overall goals for him, and my goal on the team would be to teach that gentleman how we can maximize that routine to get all those things in without feeling like that's life now.

I know when it comes to exercise with Parkinson's, it can almost feel like we have a new job, which is ironic with the initial understanding of occupational therapy for everybody. I do think just keeping in mind the overall goal is to establish that routine, not to create these rigid guidelines that you have to follow. That's why I work with people to do that.

The next step is going to be maximizing cognition. Not always something that can be rehabilitated or returned, but rather maximizing what we have and teaching ways that we can compensate for what maybe we have lost, or ways that we can try to maintain it for as long as possible. The other thing we do is organize daily life. I know that sounds similar to routine, but there are other parts of routine that are not as common. Doing things such as making sure I'm taking my medication on time, knowing that that's a part of my daily life, making sure I'm allotting myself time to get dressed because that can take longer, as we know with Parkinson's disease progression.

Konner Kielman 00:34:03
Ultimately, the goal of all of this is to promote your participation. Trying to make sure that when we want to do things, we're giving it a shot, not just determining, I don't think I can do that anymore, it's done, but rather promoting how can I get you to do that. Whether that's modifying the task, doing different things, providing equipment, anything that we can do to try to get you out there and get you doing what you love.

Ultimately, if I have it boiled down to the simplest sentence, it would be OT's focusing on why you move. For example, I need to work on my balance so that I can shower by myself. Or I need to have better range of motion and ability to turn my trunk so that I can get my shirt on, and then I can get my pants on and reach down to tie my shoes.

The next thing to chat about is just looking at activities of daily living. Oftentimes, people might hear the phrase ADL. That stands for activity of daily living, and that is pretty much just a bunch of fancy words to explain showering, getting dressed, eating, getting up and out of chairs, and going to the bathroom. Those things that typically we're going to do on a daily basis, maybe not every day, but at least a part of our common routine. An important aspect of this is understanding the difference that Hillari had mentioned between activity and exercise. Although activities of daily living are something that we should do often, it's another good way for us to get activity.

Konner Kielman 00:35:34
This typically wouldn't count as exercise, but it can make us more active and have us use our bodies, as Hillari had mentioned previously. How can we do that? Getting up and going to get a glass of water once an hour is a great example. If we're watching TV or we're a little bit more sedentary that day, an opportunity to do this would be to set an alarm or have a family member remind you, "Okay, it's time. It's been an hour. We've been sitting for quite a while. Maybe we should get up and go get a glass of water." The other option, and something that I could take from Hillari's playbook here, is a little bit more sit-to-stands if I've been sitting for a little bit too long.

For example, when you're thinking about watching TV, we get those commercial breaks, or if you're more of a streamer, we get the opportunity between episodes where we have that little bit of a break. That's a great opportunity to practice maybe three to five sit-to-stands, just standing up out of your chair and sitting back down. A really good opportunity just to get yourself moving and to get yourself active.

One other option that I like to think of as a great example is first thing in the morning, practicing rolling side to side. As we know, morning is a tough time for a lot of folks. It's when we're really stiff. Maybe our medication hasn't kicked in yet, and we're starting to feel that, oh, it just feels kind of like there's some rust on the hinges. Best thing we can do: warm up by getting some activity. Prepare ourselves for movement. You can do that just by rolling side to side. Reach around and roll in your bed, obviously doing that safely, focusing on the ability to not roll out of bed, but giving yourself an opportunity just to stay moving, stay active.

That's kind of the ultimate purpose of utilizing these activities of daily living as physical activities, just to keep us moving, keep us active.

One common issue that we run into, though, and that's going back even to the exercise slides with Hillari, is that motivation can be a difficulty. We know how often we should work out, or we know what we should be doing, but it's hard to get that initial drive to push us forward. Through the Parkinson's Foundation, they determined that around 40% of all individuals diagnosed with Parkinson's experience apathy. Apathy and motivation are kind of tied together. Essentially, that apathy shows up and it makes us feel like, I don't really care if I do that today. I just don't feel like I have it in me. It just kind of doesn't sound interesting for me to do my exercise today.

A lot of the time, I think that can be taken personally by ourselves. We kind of are hard on ourselves, thinking, oh, well, I'm just being lazy, or I'm not doing what my physical therapist said. When in reality, that's a manifestation of Parkinson's disease. Just like tremor, just like rigidity, just like shuffling of gait, all those different symptoms that we experience, apathy is on that list as well. With that happening, we know that it's going to greatly limit your participation, decrease your motivation, and ultimately kind of cause you to withdraw and not really engage in things, which then overall kind of diminishes your quality of life.

How do we overcome that? There are a lot of problems with apathy that feel like they can't be addressed, but there are some ways to keep ourselves accountable and keep ourselves active. The three that I'll talk about today, in my opinion, are kind of the simplest and the least invasive to put into your lifestyle, and that's going to be SMART goals, establishing a daily calendar or routine, or finding meaningful activities to help us get started so that it doesn't feel like we're overcoming this mountain of tasks, but rather start off small and do the things we like to get us into a routine.

Starting with SMART goals.

Konner Kielman 00:39:19
It's an acronym. I'd like to kind of explain each one. I did bold the ones that I feel are the most important. The letters stand for Specific, Measurable, Attainable, Relevant, Timely. Now, what does that mean? Specific: I like to make sure that people are understanding, what's your actual goal? A lot of the time, I'll hear, "Well, I'd like to be more active," or, "I'd like to do the exercises that PT has given me." But that's not specific enough. Essentially, when we're saying that, the other decisions you have to make to meet those goals are: when should I do that? What activity should I be doing?

Should I be doing the home exercise program my PT gave me, or the exercise program my speech therapist gave me, or the one that I got from LSVT? It gives us too many variables, and it's easy to talk ourselves out of doing it.

The first thing to do is to make sure your goal is specific. Instead of saying, I want to be more active, maybe my goal is more specific to walking. Because of that, I want to walk 30 minutes three times per week and leave it at that. Then we can kind of go to get started. Now we know, okay, my goal is I want to walk. I know how long I want to walk. I know how many times per week, and now I have a place to start.

The next step is to make sure that your goal is measurable. By saying, I want to walk 30 minutes, how many times? By when do you want to be able to walk? We don't have that ability to measure, so we don't have that ability to track our progress and kind of encourage ourselves to keep going.

As Hillari had mentioned, when you make these small gains, you have an opportunity to make big changes. What we need to start with is tracking those small victories and working our way up so that we feel more confident with what we're doing.

The next one is attainable. Again, going back to that, start with those little goals and work your way up to the big change. If your goal is, I don't really exercise right now, but I'd like to be able to run a marathon by next week, if you find a way to do that, I would love to hear it because I could probably make a lot of money off selling that training program.

I do think starting with an attainable goal and determining, okay, maybe I haven't been walking a lot, but I'll try to be walking maybe five minutes. We'll start with five minutes, and hopefully by September, four months from now, I'm able to get that 30 minutes three times a week. Starting off with an attainable goal helps you stay committed and stay working toward that goal. Then this one, if I could triple bold it and underline it, I would, but relevant.

This is another one where I see a lot of the time that we've kind of fallen off our goals, that we're having goals set for us by other people. For example, if you came to see me in occupational therapy and I said I really wanted you to start working on your memory by doing a crossword puzzle, but secretly you hate crossword puzzles and you just didn't want to tell me that day, I don't think that you should have to continue to work on those crossword puzzles because it's not relevant to you. It's not going to make a difference in what you'd like to work on. It's not going to help meet any of the goals that you're hoping for. So make sure that you're setting goals that are relevant to you and meaningful for your life.

Do not let other people determine, this is what your goal should be. They can help you and kind of guide you toward that area. If you and your care partner or your spouse want to work on that, that's an opportunity to address, well, here's something we would like to do together.

Lastly, timely. There needs to be a deadline because the problem is, and this is something I run into personally, I'll do it tomorrow. As we know, tomorrow is kind of always in the future, and we're never not meeting our goal if I tell you, oh, I'm going to do it tomorrow or I'll do it next week. We'll get there.

That's why a lot of the projects that I've set out to do go undone, because I don't think that tomorrow is a true answer. I think a good way to do this is make sure I know by September I want to have my goal met. Then I also know, how do I need to progress that goal as we go?

Some of the ways to kind of structure that timeframe is through a daily calendar.

Konner Kielman 00:43:37
Why do we do this? Just like I said, the goal is structure. I also want to reiterate the importance of scheduling time for life and having flexibility.

Very often, I would say that I see people kind of fall off their goal path or doing the things that they want to do because it felt like it was burnout. It was just kind of this, oh, every day at nine o'clock I have to exercise, and every day at eleven I have this scheduled, and I have all these medical appointments. We have to allow time for some flexibility, and we have to schedule time for life because if we don't, we'll let it slip by.

The benefits of this are that you have the opportunity to track your progress, as well as compensate for maybe some of those memory difficulties. For example, if you have a set of activities that you know by tomorrow, I have to go to my appointment with Konner in OT. I'm going to see Hillari in PT after. The wife wants me to finish up the laundry, and then I have to take my dog for a walk. Well, if the memory's not working as well as it used to, there's a good chance one of those might fall through the cracks, and then we're going to miss out on it. Having this daily calendar would allow us to compensate for some of those difficulties and give you a to-do list to check off.

Ultimately, the overarching goal of this is to develop consistency. This is something I wouldn't tell somebody to do for your average Wednesday, but rather on a daily basis. Allowing yourself to set this up every morning or the night before so that you can track your to-do list and make sure you know what's coming up the next day. In order to develop this sort of muscle memory, that's where we need to be doing this on a nightly or daily basis, because if we don't, it slips out of the routine and then we don't think about it.

I do have an example of a daily calendar because I think a lot of times it's a little vague to describe that. I just kind of made up a day for people. Let's say you're getting up at seven, you're going to bed at 10:30. Some of this stuff we'd like to keep as a daily routine that you're doing every day. For example, eating breakfast, doing your morning routine, like brushing your teeth, taking your medication, going to the bathroom, getting dressed, all those types of things, eating lunch, eating dinner, your night routine, medications sprinkled in there as well. Those are all the things that we expect to be every day.

Now, what I'd like to have everybody take a look at is more of these 9:00 to 12:00 timeframes, 1:00 to 3:00, 3:00 to 5:30, 7:00 to 9:00. In there, you're going to see there's a lot of repeat. There is going to be information about exercises, errands, hobbies, chores, leisure time, family time, appointments, all sorts of different things that can go in there. The goal of this is that each morning you can go through and select what you'd like to put in. For example, for this person, they chose exercises in their 9:00 to 12:00 slot. They did their PT from 9:00 to 9:45. Then they had some chores that they needed to knock out that day.

Then they also selected chores during that time slot and finished laundry. Lastly, they had a doctor's appointment from 10:30 to 11:30. This gave them the flexibility to pick those things in that time slot. Now, how this can work for you is let's say 9:00 a.m. is a really bad time for when your medications are kicking in and that's not going to be when I'm going to exercise. Now you can give yourself the opportunity, 1:00 to 3:00, 3:00 to 5:30, and 7:00 to 9:00, to pick, okay, I just need to squeeze exercises somewhere in there.

But if you go through the calendar overall, the things you're going to notice is that this life is fairly balanced. We've had the opportunity to make breakfast. We've gotten our chores done. We gave ourselves time to watch TV. We gave ourselves time to spend with family. We worked on our hobbies. We even had more TV time. It kind of teaches us how much time is available in the day, and that maybe we're spending more time doing things that we maybe don't care if we do or maybe aren't as interested as we thought, but didn't realize we were spending that much time doing it.

To move forward, thinking about how we fill these things with meaningful activities. I think the first question to ask, and that's anything that you can talk to your occupational therapist about, is what makes you happy?

Konner Kielman 00:48:00
What do I like to do? Is it, I am a biker. I love to go on the trails and ride my mountain bike. Or maybe I'm a golfer and I like to get out and hit the links every now and then.

That's what we need to start with as our opportunity to participate in these meaningful activities. Finding what that is for you and determining what are some non-negotiables, some things that I want to continue doing throughout my life.

Then that pops up, I think, the age-old question of, well, what if I can't do that anymore? There are a lot of team members that are available to you that can help. People like your occupational therapist, your recreational therapist, your physical therapist, your neuro rehab providers. We're all available to help you determine, how can we still keep you doing that? Maybe it's changing when we're doing the activity. Okay, we can bike, but we only want to do that when your medication is really working. Or maybe it's determining, maybe we'll just go to courses that have less hills, so when you're golfing, it's not so difficult to get around.

The other options are going to be modifying the activity. How do we change the activity itself? Maybe instead of biking down some mountain trails, we're going to go on a street bike and just kind of ride on a flat surface, so it's a little bit less challenging on the balance because when we're on those trails, it's a little bit more of a falls risk.

The other option would be reimagining the activity. As Parkinson's progresses, sometimes it becomes a little bit more difficult to modify because mobility has changed, strength has declined, cognition might become a factor. What can we do to reimagine the activity? One big example I give is an adaptive golf program. Now, that's going to be particular to where you live because not everybody has that opportunity, but there are many just kind of throughout the country that give you an opportunity to really just go out there and practice with somebody who can help you with your balance, make sure you're not losing your balance.

Or if it's a little bit simpler than that, because we're having some difficulties getting out of the house, playing some Wii golf or some Wii bowling. You can do that seated. You have an opportunity to still feel the impact of swinging a club. You have an opportunity to look at what you're doing, and you can compete with your family.

Lastly, I think the most important piece is get to work on it. If it's something that we want to do, that means we've got to keep trying to do it. If we're just kind of reimagining it or learning about ways, but we don't put that into action, then we're not going to get the benefits or the enjoyment. The other thing I like to clarify is that some of these activities could be used for exercise.

Things like biking, or if you're an avid walker or hiker, these are all things that we have an opportunity to get out and do and work at. Like Hillari had mentioned, trying to get to that six to eight out of ten on the intensity scale so that we have an opportunity to really get some exercise out of that. The overall benefits of utilizing the activities are immense. We have the opportunity to increase your engagement in things that you like, to increase your engagement of things you want to do, as well as improve your quality of life.

It limits your apathy because now you care about the activity that you want to participate in. Ultimately, the goal, as we know, working with Parkinson's is to maximize the maintenance of your function and maximize your overall cognitive function.

With that, I will pass it back to Hillari to go over a little bit of our exercise demonstration.

Dr. Hillari Olson 00:51:35
All right, friends. We are going to pivot to do a little bit of movement before we hand it over to Emily. My panelists, if you wouldn't mind exercising with me, I think it would be helpful just for people to see. You can choose to sit or stand. This goes to everybody. Just a couple of things to keep in mind. You can perform the exercises in sitting, standing, or standing up with support. Keeping in mind that safety is the number one thing. Our goal intensity is just to be about halfway up on that scale, so maybe six out of ten or so on that ten-point scale.

I'd like you to just be encouraged to do whatever works best for your body today, avoiding things that are painful or don't feel good for you. Really, this is just designed to help us get a little bit of movement into our day. Try your best to keep your movements big in whatever range of motion is available to you, and please feel free to modify as you need to. The number one thing is just to try to have a little bit of fun. First thing I want you to do is choose if you want to sit or stand.

Go ahead and scoot forward if you're sitting, scoot forward in your chair. Take your feet apart a little bit. We're going to think about getting that nice big upright posture. I want you to lift your chest up and drop your shoulders back. Then think about just bringing your head right on top of your spine. You're looking straight ahead, eyes on the horizon. We'll take a nice deep breath in and sweep one or both arms up. Then as you exhale, let the arms come down.

We'll do that a couple more times. Nice deep breath in, expanding your rib cage. Big exhale, arms come down. Good. We'll do that one more time. Nice deep breath in. Stretch it out nice and tall to the sky. Modify that range of motion if you need to, and then big exhale. Arms are going to come all the way out to your sides so you have a nice big open posture. I want you to make a tight fist and then try to open your hands up as big as you can. Close and open. If you're not sure how you're moving, take a peek at your hands. See if you're getting those hands and fingers extended nice and wide.

Good. Now we're going to use our loud voices. We're going to all count together and pretend like we can hear each other. Here we go. We're going to count backwards from ten. Nine, eight, seven, six, five, four, three, two, one, and big finish.

Good. Nice deep breath in again. Arms are going to come out to the side. You can bring them down a little bit if you have shoulder trouble. Keeping those fingers wide. This time we're going to press back to open up the posture. Squeezing those shoulder blades together, we're going to count backwards again: ten, nine, eight, seven, six, five, four, three, two, and big finish.

If you're sitting or standing, we're going to take it to a march in place. I want you to just go ahead and march in place. Try to move your arms and legs opposite if you can, just like we do when we're walking. Keeping that posture nice and big.

Good. Sitting up tall in your chair or standing tall, keeping in mind that you're able to stand up and hold on to something if you need to. Nice big movements. Try to move those arms and legs evenly side to side if you can.

Great job. Keep it up. Good. This time we're going to take those legs apart. Let's march those legs out a little bit wider, nice and big, keeping that posture up. Keep moving those arms big.

Great job. Almost there. Keep that posture big. Just starting to bring that exertion level up a little bit. Last four, and three, and two. Last one.

Dr. Hillari Olson 00:55:47
This time what I want you to try doing is just take a reach forward. Reach forward as far as you feel comfortable and then find a super big posture.

Good, we're going to do that again. We're going to reach forward big and then we're going to sit or stand tall big. Good. Reach forward big and then big posture. We're going to try eight of those. We're going to reach. Big posture. Nice job squeezing those shoulder blades together, getting your body all the way upright. Reach forward. Big posture. Nice job. Reach. Big posture. Four more. Reach. Good. Three more. Great job. Two more. Good.

Next up, we're going to shift our weight side to side. I want you to shift your weight over to the right. Nice big arm movements. Shift your weight to that right hip. Then try shifting your weight to your left hip. Going to try it again. Shift your weight right. Good. Then shift your weight left.

Nice job. This is what we call our power rock or our weight shift side to side. We'll just alternate reaching side to side. You can do this standing up as well, holding on if you need to. Don't worry if you're not exactly in time with us. Just do the best you can.

Four more. Nice and big movements. Three. Nice job. For two. We're going to take it back to that forward reach next. Forward reach. Reach forward. Big posture. Reach forward. Big posture. Two more. Reach forward. Big posture. One more. Good. Shift your weight side to side. Big reach. Side to side. Good. A nice big weight shift. Awesome job. Modify as you need to. Keep going if you can. All right, pausing in the middle.

Take those hands up to your chest. We're going to take it to some boxing, cross-body punches. What I love about boxing for Parkinson's is it's really good to do in a variety of different positions. It helps us get our heart rate up. It's easy to modify. You can do it sitting or standing. It also incorporates some trunk movement. As you're punching across your body, think about making those movements nice and big, starting to let your shoulders turn a little bit.

We're getting warmed up. Good. Eight more. Seven, six, five. Good job. For four. You can count out loud with me if you'd like. Good. Awesome job. This time we're going to reach down towards the floor. I want you to reach down as low as you feel comfortable and then reach up high to the sky. Nice big movements.

Reach low and high. Be mindful of your head position. If you have a tendency to get lightheaded, don't let your head go lower than your heart. Reach down and up. Now we're going to count together. Eight and up. Good. Seven, using your loud voice. You got it. Keep it big. Six. Nice and big. Five. Great job. Four. Good. Two. Nice job.

Going back to those jabs across the body. Eight, seven, six. Turn that trunk. Five, four, three, two. Good. Reach down and up. Last set. Reach down and up. Modify if you need to. Good. Listening to your body. Good. Awesome job. Keeping it big. Nice job. All right.

Dr. Hillari Olson 00:59:36
Just go ahead and shake out those arms a little bit. You guys didn't know you were going to be sweating so much, did you? Hopefully got a little bit of a workout in. Just kind of shake out those arms a little bit.

Find that big posture again. Chest is up, shoulders are back, and we're going to just bring the arms down and back, so kind of a low V shape. Think about opening up the chest and shoulders and reaching through your fingertips. If it works for you, just lift your chin slightly up. Think about squeezing your shoulder blades together, finding that nice open posture.

Good. Try to keep breathing. Do your best not to hold your breath. Good. Take another breath in. As you exhale, go ahead and bring your hands forward. Put one hand on top of the other. Pretend like you're hugging a big tree trunk. You're going to press your hands towards me, drop your chin down towards your chest. Think about separating those shoulder blades, feeling that stretch right in between the shoulder blades. Try to keep breathing here.

Good. Awesome job. Good. Coming back to the center nice and big. This time I want you to take your left hand, put it on the outside of your right knee. We're going to take our right hand and stretch it back behind us, nice and easy, rotating through the spine, just going into whatever range of motion you have. See if you can look back at your hand. Keeping that posture up nice and big. Keep breathing as you rotate.

Try not to slouch your posture. Actually, we get more rotation if we keep our posture nice and long through the spine. Good. Coming back to center, take a nice deep breath in, sit tall again. This time right hand to the left knee. Left hand stretches back behind. Turn and look back at that hand. You can even wiggle your fingers or open and close the hand.

Gazing back. Good. Coming back to center, nice deep breath in. If it works for you, your right arm comes up. As you exhale, take an easy side stretch to the left. Good. Nice easy side body stretch, continuing to breathe here. If you don't like your arm up, you can also just place it on your hip, leaning with your trunk.

Good. Coming back to center, left arm coming up. Sitting tall, stretching over to the right side, or just simply placing that left hand on your hip, side body stretch.

Good. Slowly coming back to center. Sit tall in your biggest posture. Bring that head straight back again. One more nice deep breath in. One or both arms come up. Big exhale. Arms come down. Put your hands together. Give yourself a round of applause for your movement break. Good job, team.

Crista Ellis 01:02:42
Thank you so much, Hillari. That was so rejuvenating and much needed after sitting in and observing and getting some new information, helping the body integrate what the mind is learning. Really appreciate your guidance and movement today. It's my pleasure to introduce Emily Hall, a licensed clinical social worker with the Central Virginia VA Healthcare System in Richmond, Virginia. Emily has been part of the Southeast PADRECC Clinic since 2022, bringing her deep experience in mental health and medical social work to the Parkinson's community. She plays an active role on the PADRECC National Education Subcommittee, co-facilitates several support groups, and helps lead Parkinson's community events. Please join me in welcoming Emily Hall.

Emily Hall 01:03:34
Hello. I know I have a brief time with you all today. The slides, I believe, are going to be shared afterwards too. If you need any more details on some of the programs I'm going to talk about, we'll have more time then, and then in the Q&A too.

I'm going to be going over some veteran-focused resources and community supports that are available for ongoing engagement in physical activity and wellness to maintain a sense of purpose and connection.

The VA has a Whole Health program. Just to say, the Whole Health principles are not unique to the VA, meaning other healthcare systems have incorporated these as areas of focus. But the VA did officially launch this program in 2011, and it focuses on a holistic approach to care that considers the entire person, including their physical, mental, emotional, and spiritual well-being, with the focus being on what matters to you, not what is the matter with you.

It may appear to kind of be a vague topic to some, but any of these activities are incorporating some form of Whole Health principles. In the words of James Clear, he shares, meaningful change does not require radical change.

Each VA Medical Center has Whole Health programs that may vary in what they offer specifically. For example, these are some of the wellness programs offered here through the Richmond, Virginia Veterans Hospital. There are health and wellness coaches who are available for both individual and group coaching. Additionally, in the center of the slide, you can see some of the VA mobile apps that are available for download that are also supported by the Whole Health program. What you see on the right, again, is just some examples of some of the offerings at Richmond.

These slides, again, are going to be shared after, so the links here are all live links that you can click on to get a little bit more information about Whole Health. The great part about some of these education handouts is, if you're not a veteran registered for care, you can still use some of this information as well.

The GeriFit program is also an exercise program that promotes health and wellness for veterans. Participants in the program have demonstrated improved health, mental and physical function, and well-being. It's a great way for veterans to stay active by using a variety of strength and aerobic exercises. They offer a lot of different group classes also, like Tai Chi, dancing, walking, and balance.

Veterans are given a personalized exercise prescription, and guidance in carrying out the exercise program is provided by trained exercise staff, which can be a physical therapist, kinesiotherapist, nurse, and kind of just varies at each facility. GeriFit was actually started in 1986 in Durham. The program is now offered at 33 different VA healthcare systems around the country. If you go online at these links here, they have different locations where you can find it.

If they don't offer it at your specific facility, a lot of the GeriFit programs offer tele-GeriFit, meaning it's done via telehealth as well. We have quite a few veterans in our clinic who are utilizing this.

The VA MOVE! program is also a unique program that we have here for veterans. It's a weight management program that's supported by the VA's National Center for Health Promotion and Disease Prevention. It's now in its second decade of operation, and it includes the most up-to-date approaches for weight management. These are some of the program offerings that are available, but they've also made some resources available online as well to individuals, even if you're not getting care at a Veterans Hospital, that you can still access and use.

To get started, there are links on this page that you can use to register, and then what it will do is kind of send it to the local MOVE! program, and they'll kind of finish the screening with you as well.

Emily Hall 01:08:05
Now, in order to maintain meaningful purpose and connection, it's also important to ensure your mental health needs are being addressed as well, essentially like emotional fitness and well-being. The VA offers a variety of mental health support services at each VA, some of those being in the Primary Care Mental Health Integration clinic. There are various psychotherapy and psychoeducational groups. The flyer on the left shows the New Jersey VA telemedicine program, which is sponsored by the VA Office of Rural Health, and this is focused to enhance emotional well-being.

It's offered nationally for veterans via telehealth to help veterans with PD cope with depression, anxiety, and the stress and challenges of living with the condition.

The flyer on the right is a specific mindfulness group. It's a six-week program that one of our neurology social workers here at RVA runs in a virtual group format. While this program might be unique to RVA, the overall goals and protocols are based on the VA CALM group principles, which are typically offered also within the Whole Health programs.

Together We Served is an online community website with over two and a half million members for military and veterans. They launched a free service called Veteran Buddy Link, I think within the last year, to assist veterans who, due to their location and circumstances, may find themselves a little bit more isolated, in a state of loneliness, and would welcome some kind of support and friendship of other veterans, particularly those living in their neighborhood or their area.

Those who served share a unique bond that remains with them throughout their lives, and often veterans are naturally drawn to and thrive in the company of other veterans just because of the unique culture of military service and the commitment to service and sacrifice for all. The registration includes a brief summary of a veteran's military service, their ZIP code of residence, and an invitation to respond to. Once they complete registration, an email is sent out automatically to the Together We Served members who live in the same ZIP code, and then they work to try and connect you.

The VA Recreation Therapy Program is an amazing program. I will say we work very closely with them here, but it involves therapeutic recreational activities, leisure education, and leisure participation to help veterans. It restores and rehabilitates functional capabilities for veterans with chronic conditions like Parkinson's. It involves modifying activities to enhance independence and improve lifestyle. Here we have just some of the benefits and potential programs that are based on interest and local VA availability.

Emily Hall 01:11:12
I'd like to highlight specifically the community reintegration aspect, leisure education, and the social opportunities included as well.

Group art outings are a huge part of the VA Recreation Therapy Program. This is just a few of the photos of different events that have happened for people around the country. Again, they can be specific to where you live, if you're going to the water, and what offerings they have there locally.

Again, this is just some other activities. The air rifle clinic is very popular here in Richmond. A lot of our veterans who want to continue to try some form of biking or cycling, they have various different recumbent trikes that they can try out too, with the adaptive sports program, which is sort of embedded within the recreation therapy program as well. And always, some animal-assisted therapy never hurts.

The VA Adaptive Sports and Arts programs deliver direct patient care to veterans through formalized adaptive sports medicine and provide the largest coordinated therapeutic arts events to optimize independence, elevate community engagement, and enhance quality of life. The national office administers six in-person events that you can see here, a grant program, and a monthly training stipend program for thousands of veterans in the U.S. You can find out a little bit more about that online as well.

The VA offers music therapy, but music therapy itself is a clinical and evidence-based use of musical interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program. It uses music in all of its facets, physical, emotional, mental, social, aesthetic, and spiritual, to help the veteran improve or maintain their health.

Specifically, drumming, which I don't think, well, the one gentleman's drumming in this picture, has shown to help veterans with Parkinson's reconnect their brains with their bodies, as the disease breaks many of those important connections, making everyday tasks a little bit more difficult. It forces people to kind of use both sides of their brains, and it's nice to do in a group format as well. If you are interested in exploring music therapy programs through the VA, we would recommend first connecting with the Recreation Therapy Program.

Project Healing Waters is a nonprofit that began in 2005 in the area of therapeutic outdoor recreation using the sport of fly fishing as an intervention. Initially, they were just serving wounded military service members at Walter Reed returning from combat, but since then, they have expanded widely, including at VA hospitals and clinics. They have a dedicated, developed curriculum of fly fishing, fly casting, fly tying, and fly rod building. On this graphic, you can see some of the different areas where they are available. If you go online, they have the contact information for each individual chapter.

Heroes on the Water is also another nonprofit that was founded in 2007 to help provide some recreational wellness experiences. Their primary modality is kayak fishing.

Emily Hall 01:14:54
They kind of do it in a very pressure-free environment to allow for opportunities for community building, healing, and pretty much any ability and background and age they try to cater to. It is free.

Sorry if I'm going a little quick here. I want to make sure we have time for questions and answers. Some of the VA PADRECCs and the associated sites through the VA have various group offerings as well, unique to their facilities. Speech therapists may offer Loud Crowd or Speak Out therapy groups, which many of our veterans love to participate in on a weekly basis. Some PTs may offer group Power Moves or chair yoga exercises, but again, those offerings may vary. Some of the graphics I've included here are just some in-person and virtual events that our occupational therapists here through Richmond have done.

It's important to also kind of think outside the box and try something new when we're looking at staying active and staying connected. Our nurse helped with an amazing little pilot program that our local PADRECC has done with veterans called Virtual Lego Group. They meet monthly and work on various projects throughout that time. They have organized a few in-person builds, but the majority of their meetups are done virtually because people live kind of hours away from each other. They were able to kind of meet when we had an in-person event to show off their work.

Our nurse coordinator here, Jessica Kaplan, has also been using the Parkinson's Foundation Community Grant to generate a virtual improv group that we have here called At Ease. They actually have an instructor, if anyone's heard of him, Robert Cochrane, who's well known in the PD community and the founder of Yes, And...eXercise. He helps run that group as well.

Lastly, veteran service organizations can serve many roles, most well known for helping with assistance with claims, but they're also a very good opportunity for communities, for veterans and care partners to fulfill advocacies, support programs, and other social engagement for our veterans with PD. The real question is, how do I start finding these resources? That's where I would encourage you to connect with a social worker at the VA.

We're here to assist veterans, families, and caregivers in resolving what we call social determinants of health that may challenge your health and well-being. We're woven into the fabric of the VA healthcare system, meaning you can kind of find one of us anywhere. Often people may think to only utilize social workers when you're kind of in this state of crisis or you have urgent care coordination needs, but we're really here to help get to know you and kind of figure out what matters most to you, and also help find resources and ways to help explore and address your needs.

Emily Hall 01:18:04
I know we're short on time, so I'm going to kind of filter through, but if you're connected with a VA PADRECC clinic, I would highly recommend trying to get in contact with a social worker there, or if there's a neurology-affiliated social worker. Otherwise, you can always reach out to your local VA and ask to be connected to the social work department, and sometimes that way they can get you connected to whoever the social worker is with the primary care clinic.

In summary, again, these are just some of the programs that we've already gone over, but it's important to not forget that there are a vast amount of community resources that are not veteran-focused that are amazing for staying active and staying connected. A lot of the different Parkinson's foundations or local groups will put on free exercise programming. If you're having trouble finding any of that, just reach out to a social worker, or if you're working with a therapist, they may be able to connect you as well.

I'll just kind of send this with you guys, but this is a dopamine little menu that our nurse coordinator made to really help you try to incorporate some activities that you can do maybe individually, with a partner or family member, and some more social-related activities. Again, they're almost like SMART goals, but kind of like coping skills as well.

Again, these are our PADRECCs and how to get connected. These slides will be provided. If you're having any difficulty getting connected to one of the Parkinson's and Movement Disorder Centers or associated sites, the VA does have a hotline that you can call for assistance. Awesome.

Crista Ellis 01:19:54
Thanks so much, Emily. Really appreciate you outlining some really helpful resources. As Emily was alluding to, we will send you the PowerPoint presentation so you can click those links, access them, and inquire on what's supportive to you. Connor and Hillari, I'll invite you back to answer some questions for us.

The first question that we received was about exercise, and our participant is curious if it's possible to do too much exercise.

Dr. Hillari Olson 01:20:26
Well, I think it depends on what type of exercise you're doing. Just like anything, we want to think about the calories that you're taking in and the calories that you're expending through your daily activity and your exercise. I would probably say to maybe consult with your physical therapist just to make sure that the exercise that you're doing is safe, and I'll probably just leave it at that.

Crista Ellis 01:20:56
Good. Another question about exercise, and particularly strength training relating to slowing down or deterring the onset of dyskinesia. Tim asks, is it true that routine strength training can slow down or even deter the onset of dyskinesia?

Dr. Hillari Olson 01:21:18
Dyskinesia is actually a symptom, or I'm sorry, not a symptom, it's a side effect of the Parkinson's medication. Dyskinesias can be sort of referred to, or you can think about it like those writhing movements or kind of movements that happen, and it's because of excess dopamine in the system. If you remember that dopamine helps us to move, sometimes if we're taking that dopamine replacement therapy and we have too much dopamine, it can give us extra movement.

You might be potentially referring to maybe other motor symptoms of Parkinson's disease. What I would say is that, in general, the research has shown that exercise can be helpful. It's not super specific. There's lots of exercise that's been researched in Parkinson's, so right now, the jury is still kind of out about what's the best type of exercise to help with some of the motor and non-motor symptoms in Parkinson's disease.

I don't know if that completely answered your question, but hopefully, I would say some exercise, any type that you can do that you find enjoyable, is going to be helpful for a variety of different reasons.

Crista Ellis 01:22:29
A question that's really specific to our community here today: is there a difference in understanding exercise and living well with Parkinson's as a veteran that goes beyond the general population who does not identify as a veteran living with Parkinson's? Are there specific exercises that work better for veterans with Parkinson's?

Dr. Hillari Olson 01:22:54
I keep answering the question, so I hope that's okay. I don't think that there's really a specific type of exercise that works better for veterans. I think it really is person-specific. We've found, and I'm sure Emily and Connor can attest to this too, I think veterans have a good sense of camaraderie, and so we have found that there is a lot of benefit to doing exercise in groups. At the Minneapolis VA, we have a ton of virtual exercise groups that we do for veterans. We also have an in-person exercise group, and I think this just helps to kind of create that community.

In general with Parkinson's disease, I think our veterans with Parkinson's really do like to come together. Those social settings I think really are helpful. I would encourage that if you have a local group, or if you have a small group of veterans, or you can do something with like-minded individuals, I think that always helps to kind of promote adherence and really sticking with that activity or exercise. I don't know if Connor or Emily have any other things to add to that.

Konner Kielman 01:24:04
I was just going to mention, going back to what we talked about a little bit in the presentation, in terms of specific to veterans, I think the better question is, what's specific to you? What do you like to do? What's going to get you to do it? I think that's kind of the number one focus when moving forward, because the problem is, and going back to the relevance, if this is an activity that you're like, I hate doing the stair stepper, so I don't want to do it, then now you're not going to do it, and then we're going to kind of fall down into a pattern of just, I'll do it tomorrow. I think finding whatever that kind of exercise is for you and focusing on whatever your enjoyment is, what will get you moving and what will get you on your feet, is going to be the best way to get started.

Crista Ellis 01:24:51
Thanks for teasing that out a little bit more. We got a question in registration about specific exercises for veterans, and I really appreciate the innate nature of camaraderie and coming together, and how having that sort of group accountability is really supportive to those who are living with Parkinson's and also are veterans. Thank you for identifying that.

Bill wants to know, what about e-bikes and Parkinson's? Can we speak about electronic bicycles and its relationship with Parkinson's disease, if there is any? Go for it, Hillari or Connor.

Konner Kielman 01:25:30
I was going to say my immediate reaction is the safety aspect. I feel like for OT, my whole job is risk management. It's determining what level of risk do we want to take and what's the outcome of that.

Obviously, the problem with an e-bike, and as Hillari had mentioned, kind of error detection, is, do we recognize maybe we're going a little bit too fast for right now, or do we recognize we're starting to falter and we're starting to wobble? The problem with an e-bike versus a regular bike is that obviously you can move a lot quicker than your body would allow you to. That would be my first instinct. The second would be, if it's determined you're safe to operate that and that you're good to go, what are you using it for? Is it more of like a leisure, I want to get outside, or is it more of, I want to exercise? Because if the goal is to exercise, I would say the e-bike is going to be less you and more the motor. Lots of questions to weigh.

Dr. Hillari Olson 01:26:25
I think that's another, Emily brought up recreation therapy, so the therapies work together with rec therapy to look at things like adaptive bikes or three-wheeled bikes and different options for biking, especially if that's something that is of interest to you. I would definitely check with your local VA Recreation Therapy to explore some other options for biking.

Crista Ellis 01:26:49
Okay, now what about tennis and horseback riding? Don wants to know more about tennis and horseback riding and its relationship to Parkinson's disease or exercise and movement.

Dr. Hillari Olson 01:27:00
I don't know that there's any specific exercise. I haven't seen any specific exercise, those types of exercise related to Parkinson's as far as how effective it is. The thing that I would consider for tennis is I would look at your balance and your agility and coordination, especially working with your physical therapist on looking at your reactive balance. If you think about tennis, it's pretty quick. If you're going to reach for a tennis ball to the side and you lose your balance, are you going to be quick enough to take that protective step so that you don't fall down?

Earlier on in the disease, you probably are just fine to do that, but as the disease progresses, you might have more trouble with that reactive balance, and that could put you at a higher risk for falling just because it's a higher-risk activity. I'll put another plug in for rec therapy. They're great at exploring and adapting leisure interests. Something like tennis and horseback riding are both programs that different rec therapy departments offer, depending on where you are at VA.

Horseback riding, the same thing, I would just kind of think about, does it seem like you're getting a workout? If you're using it as exercise, does it seem like you're getting a workout? What are the things that you need to be able to do to do that safely, getting on and off the horse? Is there support there? Are you wearing a helmet? Please do. Just thinking about things like that can kind of keep you safe. I think we want to keep you doing the things that you want to do and that make you happy. So kind of anything, anything we're willing to explore.

Konner Kielman 01:28:41
I think the option is, if tennis is no longer the way to go, what's the next step? Which could be pickleball. We've got a smaller court. It's a little bit less of that lateral movement, that cutting. It's also an opportunity to switch over to table tennis. Even if we're just still getting that feeling of swinging the racket, hitting the ball, going back and forth, and ultimately even all the way down to Wii Sports, playing virtual reality, an opportunity to just keep the movement and keep engaged.

Crista Ellis 01:29:11
You know what I'm hearing, Connor, is as you started, Hillari, meeting yourself where you're at and adapting. We can still play tennis. It might look a little bit different, or we call it a different name and the ball's smaller, the paddle's smaller, and the court looks a little bit different. I love how you highlighted we can still do the things that we love with a more curious mindset behind what that might look like.

Dr. Hillari Olson 01:29:35
For sure.

Crista Ellis 01:29:37
Keeping an eye on our time, my friends. I want to respect all of your time and everyone who's joining us behind the scenes. Any final words to share with our community before I close this out?

Konner Kielman 01:29:50
I've got to throw out Wolves in six for all the basketball fans.

Dr. Hillari Olson 01:29:58
Wolves in six. Yeah, Connor's a sports guy. I would just say, find an exercise that works for you and try to stick with it. It takes time to form habits. Try to think of something that you enjoy doing and try to do it for a few weeks before you say yes or no, I want to do this. If you try an exercise class, try it a few times before you give up on it or decide you don't like it, because sometimes it just takes a little bit of time to get used to the movements, get used to the person who's leading it, those types of things. Boxing is a great form of exercise as well.

We did a little bit of boxing in the movement demonstration today. There are a lot of boxing programs that are specific to Parkinson's, so I would encourage you to use the Parkinson's Foundation Helpline or go online to find some resources that are available to you, whether they're in person or online. There's a lot of online resources as well for exercise. Find something that you like and try to stick with it.

Emily Hall 01:31:04
Yeah, I would agree. Try to stay patient with yourself when you're trying new things. If you've been doing something for a long time and suddenly you're noticing more difficulty with it, just being patient and also a little open with the therapists here on your teams. They really want to figure out what's going to work for you, but they're always going to wear the safety hat and make sure you're safe. But you're not going to do something that you're not enjoying. I think talking about physical activity versus exercise, like structured exercise, it's good to have things that you enjoy on both sides.

Resource-wise, I would definitely encourage you to reach out to your local VA just to kind of see what's available. If you're having trouble finding those things and you are not an avid Google research person, again, you can call the helpline for some assistance, or you can also call one of the VA social workers to see what they can find for you.

Crista Ellis 01:32:07
Thank you, Hillari. Thank you, Connor. Thank you, Emily, for sharing your valuable time and expertise with us today. I hope everyone has gained something new, whether that's a resource or a piece of information that you didn't know before, and feel empowered to apply this knowledge to enhance your quality of care and strengthen your connections.

Today's webinar and the entire Veterans Webinar Series is presented with support from the Don and Lorraine Freeberg Foundation. We want to take this moment to thank the Freeberg Foundation for helping to make these programs possible. Thank you.

The Parkinson's Foundation wants to hear from you through our My PD Story page. The Foundation shares stories written by anyone with Parkinson's disease or in the community. These stories help bring awareness to this life-changing disease and also help to inspire others. As a veteran or the loved one of a veteran, your experience with PD is unique. We encourage you to submit your story and share your experience with others in the community. To learn more and to submit your PD story, please visit Parkinson.org/MyPDStory.

Don't forget to visit our webpage and explore the resources offered by the Parkinson's Foundation that can support your navigation of living well with Parkinson's as a veteran. That website again is Parkinson.org/Veterans.

If you had a question today that was not answered or you didn't feel called to write the question into the chat, please reach out to our Helpline, calling 1-800-4PD-INFO or emailing Helpline@Parkinson.org. You can use that same contact information to order our free resources, get connected with local or virtual resources, download our educational book series and our Hospital Safety Guide. We thank you for joining us today and hope we get to see you again soon.

Crista Ellis 00:00:03
Hello everyone, and welcome to the Parkinson's Foundation's Wellness Wednesdays webinar. Thank you for joining us. Please know we are recording today's presentation, and you will receive a follow-up email from us with a link to the recording and additional resources in about one week. Our program today is not as traditional as our other Wellness Wednesdays, and we will be together today for 75 minutes, so I hope you can stick around for our extended webinar. We'll begin shortly, and thank you for being here.

Hi everyone, and again, welcome to the Parkinson's Foundation's PD Health at Home Wellness Wednesdays. I'm so grateful you are here.

Today's PD Health at Home Wellness Wednesday webinar offers us tools to optimize our appointments with our healthcare providers before, during and after. Please have a pen and paper with you on hand. If you don't, don't worry about it, but it will be helpful to take some notes, outline some of the resources that we'll be sharing and even some of the examples that we'll be offering in today's presentation.

Before we get into it, I want to remind you about our other PD Health at Home virtual programs. Each week we offer sessions tailored to support people with Parkinson's and their care partners, including Mindfulness Mondays, Wellness Wednesdays, Fitness Fridays, expert briefings with our Chief Scientific Officer and our Spanish language series, Y Salud en Casa. Be sure to visit our website by scanning the QR code to see what's coming up and explore our archive videos on YouTube.

PD Health at Home is presented by the Light of Day Foundation, whose generosity has made this programming possible.

I'm pleased to welcome our first speaker, Dr. Muhammad Nashatizadeh, a board-certified neurologist and director of inpatient movement disorders at the University of Kansas School of Medicine. Dr. Muhammad brings deep expertise in treating complex movement disorders in hospitalized patients. He also trains neurology residents and fellows, earning repeated recognition for excellence in medical education. He completed his medical degree and neurology residency at the University of Kansas, followed by fellowship training at Baylor College of Medicine. His research focuses on atypical parkinsonism, parkinsonism and the overlap of movement, cognitive and sensory disorders. Please join me in welcoming Dr. Muhammad Nashatizadeh.

Dr. Muhammad Nashatizadeh 00:02:35
Thank you so much, Crista. That was very wonderful. I'm very pleased to be here, and I'm very excited to see such a great turnout for this Wellness Wednesday webinar.

One of the things that I'm really excited to talk about today before some of our other panelists join is how you can get more out of your interactions with healthcare professionals. Many people who have Parkinson's disease are not suffering alone. They often have family members and caregivers to help and support them, but many times people over the years, having been a movement disorder specialist now for 17 years, will confide in me that they often feel like they are not getting as much out of medical visits. I'm here to talk more about why an active approach to care matters.

I remember when I started medical school 26 years ago. I like to say that I went to medical school back at the turn of the century. There was a lot of discussion about access to care, and what usually that meant was whether or not people had medical insurance to be able to afford going to the doctor. But over time, it's not so much that that's the only barrier. There are many people who have the financial ability to afford going to healthcare professionals. They have medical insurance. They may have medication coverage, but the shortage of neurologists and movement disorder specialists continues to be a growing problem throughout the United States.

Some of you may already be familiar with the Parkinson's disease numbers based on research from the Parkinson's Foundation. There was a study back in 2023 that looked at where people with Parkinson's disease are receiving their care. It turns out that only 9% of people with Parkinson's disease are actively seeing a movement disorder specialist. This is usually a neurologist who's had additional training in the area of Parkinson's disease and other movement disorders. As you can see from the orange slice on the pie graph, there are a number of people with Parkinson's disease who actually have no healthcare professional. That is more, at 11%, than the number of people who have a movement disorder specialist.

Half of people are seeing a general neurologist. The rest are seeing their primary care provider, whether that's a physician, a nurse practitioner or a physician assistant, who may be supportive and helpful but may not have a lot of additional training in Parkinson's disease. At the same time that study was being conducted, it was determined that nationwide, for 340 million people and probably 180 million of them being adults, there are only 660 movement disorder specialists in the entire United States. Even though it seems like, well, that's several hundred, that shouldn't be a problem, recognize that for most people who are movement disorder specialists, a full load of patients may be somewhere between 2,500 patients to maybe 4,000 or 5,000 patients.

Dr. Muhammad Nashatizadeh 00:06:11
Each patient also has family members or other caregivers, and so the wider net of the number of people who are affected by Parkinson's disease is very high. Many times when neurologists or even other specialists are trying to establish a care practice, one of the things that often comes up is that we are taught to be thinking about our overall support system as physicians, nurse practitioners and physician assistants.

Being able to be in a place where there may be enough accessibility for patients, to have other colleagues so that if you need somebody to cover for you, these are all important considerations. It's not surprising to me that when they looked into this, out of the 660 movement disorder specialists in the United States, it turns out only six are in rural areas. This often means that many people with Parkinson's disease are traveling anywhere from 30 to 45 minutes to upwards of even five to six hours just to be able to go and see someone who has this specific training in managing Parkinson's.

No matter how long the travel times are or no matter how many weeks or months it takes to get in, whether as a new patient or as an established patient with follow-up, when you show up to your healthcare provider, there's a lot of important material that's Parkinson's disease related to cover in a very short amount of time.

Many people will say that they only have a 15-minute appointment, and that may be once or twice per year. There are certainly some people who may have longer follow-up appointments, like 20 or 30 minutes. Some people will say maybe they can even see their specialists up to three or four times per year, especially if they have a lot of problems that are active and they're not under good control. But these numbers are sort of the average.

If a person only has minutes with their healthcare provider per year to talk about Parkinson's disease, I hope that some of the specific strategies that some of the other panelists will be covering today will be useful. I hope that you'll be able to pay attention because I think they give some very useful advice on how to make the most of the time that we have together.

The example that I've sometimes given, and I would hope that most of us who are movement disorder specialists, neurologists and people in healthcare who care, we certainly don't think of ourselves as self-important or that our time is super valuable. We're helpers. We want to be able to help people. But ultimately, if I knew that I had a very important discussion that I needed to have with the governor of my state, and this would be planned two or three months ahead of time, it would be usual that I would want to show up prepared. I would have some notes. I may have spent an hour of time or maybe longer to organize my thoughts so that when I could show up and speak to this person who's going to have hopefully a tremendous output or benefit for whatever it is I'm asking, I would be prepared and I would use their time carefully so that I would get the message across clearly.

Dr. Muhammad Nashatizadeh 00:09:33
Sometimes people with Parkinson's disease, and this is usual, it's hard to quickly identify what the priorities are. Parkinson's disease isn't just about movement. There are often non-motor problems. There are often mood, sleep and cognitive problems that are ongoing. Part of being able to focus the time is to prioritize. I might have four or five or six things that are going on that I really want to talk about, but what are the two that are the most important? What's the third one in case there's more time? Having that organization allows you to prioritize so that the next time you meet, or even between visits, you may be able to continue to work on some of those things that were further down the list.

Appointment times run on schedule. As you see even with this webinar, things will run very carefully and clearly, and there's been a whole team of people that have been organizing this. Time is important, and sometimes appointments can end without covering the material or the topics, the priorities that are the most important to you. If you tend to speak very openly but not in an organized manner, the time can run out, and then you miss out on that opportunity. Many patients have said that they have struggled with this. That's why I'm really glad that the Parkinson's Foundation is addressing this issue today.

You want to make sure that your questions and concerns are answered. There's some sort of process that's ongoing. You want to be clear about what the next steps will be, and you want to be able to have connections to other resources, whether they're local or online, to be able to continue to work on the problems even outside the visit.

A lot of people who have Parkinson's disease are not brand new at being an adult. They've often lived as adults for many years, and so that also means that a lot of us are sort of set in our ways of doing things. We know what our strengths are. We know the things that we struggle with the most. Sometimes when you're trying to get the most out of a situation, there can be a little bit of anxiety or a little bit of discomfort about trying to do things in a different way. Sometimes we latch onto the things that we're used to and the methods that we're used to. But having a shift in thinking can often be helpful.

It doesn't have to be that you completely overhaul how you approach your visits with a healthcare professional. There are actually some simple steps that a person can take to have more meaningful appointments. Remember, you're the one who's going through the process. You're the expert on what your experience is. Your healthcare team relies on you to share what those concerns may be and what the priorities will be. This is true for patients, family members and caregivers. Be an active partner with your healthcare team. Work with them. Present the concerns.

If the last appointment didn't go well, maybe it's time to mention something and say, 'I really want to make sure that I talk about the things that are very important to me because I really value this time that I have with you.' It is usual that that might feel uncomfortable at first. Sometimes people struggle to have their voice be heard if they don't feel that they're heard, but it will get easier with practice. Sometimes even talking in front of a mirror or talking with another family member or caregiver and saying, 'These are the things I want to bring up. I would like to have a practice round to go through this.'

Dr. Muhammad Nashatizadeh 00:13:07
Together, you and your healthcare team can help make the most of your Parkinson's care.

One strategy that I want to highlight is to think of this as a cycle. Just like going through any other cycle, whether you are washing dishes or doing laundry, there's sort of a process to remember. My wife will attest to this. Both of us, I feel like we just have never-ending laundry at our house. The minute the laundry's done, we sort of get back into the process again. But the appointments that you have with a Parkinson's disease healthcare professional also fit a cycle.

There's the time before your appointment, there's the time when you're actively during your appointment and then there's the time afterward, which is between those two appointments. When you start off beforehand and you have a plan, and you say, I want to make a list of the top three questions or concerns, if they're delivered efficiently, it is possible that they may be even able to help you with more than those. But having at least that organized ahead of time means that you're not running out of time. During the appointment, it's very important to go in with the mindset that you need to speak up about what matters the most to you.

This way, if you start to feel nervous or you feel like, I'm just going to go back to my old habits, and even the best-laid plans, then you're in the appointment time and you're not sticking to the thoughts that you had, this can be a struggle for people. That's why you have to go in during the appointment and say, I'm going to be ready to do it this way to try to engage my healthcare professional.

Then taking action to live well. It's not just that many people are trying to get from appointment to appointment, but the time between your appointments, that's your life. Being able to take those actions and work with those other local, community or online resources or the suggestions that your healthcare professionals offered to you, that's the time to take action. If that action isn't working, there may need to be some feedback even between visits. But otherwise, then the cycle can repeat.

I want to thank you again for attending this webinar today. I think that you will find that the panelists who are here have a lot of excellent anecdotes. They have experience going through this themselves and/or helping others with Parkinson's disease. With that, I'd like to hand this back to Crista. Thank you so much.

Crista Ellis 00:15:47
Thanks so much, Dr. Muhammad. I really appreciate how you are outlining why advocating for ourselves in our healthcare appointments is so important. Now we're going to hear from Dr. Kathleen Blake, a retired cardiologist, health policy leader and a person passionate about advocating for Parkinson's. She served as vice president for healthcare quality at the American Medical Association, where she focused on health equity, value-based care, AI and patient safety. She has also co-chaired the Federal Health IT Policy Committee and helped lead the National Evaluation System for Health Technology.

Since her Parkinson's diagnosis in 2017, Dr. Blake has been a powerful voice for the community and now serves as Vice Chair of the People with Parkinson's Advisory Council with the Parkinson's Foundation. She trained at Stanford and Johns Hopkins, practiced cardiology in New Mexico for over 20 years and continues to teach part-time at Johns Hopkins. Please join me in welcoming Dr. Kathleen Blake.

Dr. Kathleen Blake 00:16:50
Crista, thank you so much for that kind introduction and really for the opportunity as a person with Parkinson's to be able to share my perspective on what we've just heard and also really sitting on both sides of the table. My years of clinical practice have paid off in spades for my experience as someone with Parkinson's.

What is self-advocacy? It's not just politics. Advocacy means that you are actively participating in your care and that it is important not just to you, but your care partners, the people who care about you. Self-advocacy means that you understand, and it may be that you come to understand over time, what it is that you need. Especially with Parkinson's, because it is a chronic condition, a progressive neurologic disease, what you need at one point in time may be different than what you need in five years.

I always think of focus on the present, think about the future, but take care of yourself now. Self-advocacy also means you know how to speak up for yourself. For me, that's no problem. For some people, it is a learned skill, and our goal with this webinar is for you to learn how to do just that.

Also, that you have the information you need to make good choices. Some of it you will find yourself, but we strongly urge you to use sites like the Parkinson's Foundation website, Parkinson.org, or to use our helpline, and that is 1-800-4PD-INFO. We'll have it for you up on the screen shortly. Self-advocacy matters because you're the only consistent member of your healthcare team. You are present throughout, not just during the clinical visits, but you are present between the visits that you have with the people helping take care of you.

You are the expert on you. You may not use the fancy medical terms that you might sometimes hear batted around, but you know how to describe what you are feeling. For those looking, the helpline number has just been put up on the chat. Because self-advocacy matters so much, how will you know it? It can have a real impact on the care that you receive.

I'm going to go back to this just terrific flow diagram that you've seen just a little while ago and really go a little bit deeper on some of the different steps, but particularly the making of a list of your top three questions or concerns and learning, and then being able to speak up about what matters to you most. It is very much, as you just heard, that you would not think about going into a visit with a lawmaker or perhaps even with an attorney or some other individual who can have a significant impact on your outcomes without some pre-planning.

Dr. Kathleen Blake 00:20:05
Don't be embarrassed about the need to pre-plan. We all pre-plan. Probably the people taking care of you have pre-planned the visit by reviewing your chart, your prior visits and any test results. It's fine to come in with a list of notes. Seeing it in writing really forces you to prioritize your top three questions.

They may not come up on the first sort of draft of what those will be. My experience tells me that people oftentimes don't get the order quite right. They ask the easy questions first. What about this? Can I get a prescription for an exercise program? But really what they want to talk about is, I'm having trouble sleeping and I've actually been kicking my partner in bed at night. What can I do? Things that we may be more reluctant to discuss. I've also found that people are reluctant to discuss issues that might result in a change in their level of independence.

Don't cheat yourself by just asking the easy questions. Ask the challenging ones first. In terms of being able to actually speak up about them during the visit itself, you have the list. You can take notes. There's nothing wrong with keeping your eye on the clock, because there is a clock. It's a mental clock, it might be on the wall as well, it might be in people's watches, but keep your eye on the clock. Because then you can say, I want to be sure we get to the third topic on the list. I don't want to miss the chance to get your input on that.

Then the benefits of pre-visit preparation. I would add to this list, which is here, figuring out are there ways that I can front-load information so that we get right to my top concerns. This particularly is important by reviewing your list of medications because different clinicians may be seeing you not just for Parkinson's but also for any other conditions you have. Looking at that list, I've gotten to the point where I go over my list with a fine-tooth comb. It's only recently that I walk in and the list is correct from the get-go.

Preparation shows you and the people taking care of you that you really do want to be an active member of the team, and that you want to be sure that your healthcare needs and concerns are guiding the appointment, and that you get the kinds of referrals and resources you need. Quite frankly, then the people taking care of you feel much better about the visit that they've just had because they don't want you to leave saying it was a bad visit.

Now, in terms of bringing a companion to appointments, I think that this is something where people vary over time. It may take some getting used to, the idea that someone is going to come with me. But some of the things that can help you are to have a conversation with the companion who will be joining you and say what your expectations are, what you would like their role to be during the visit.

Dr. Kathleen Blake 00:24:09
They may interrupt and say, Kathy, you forgot to mention such and such, or you're not getting to topics number two and three. Or they may say, I think she might be underestimating how much of a problem her sleep is, whatever it might be. They learn how to be that gentle nudge, the record keeper.

They're also able to, when you go home, and typically you'll arrive together and you may leave together, have a conversation about what did we both hear? They'll be able to support you between your visits with your clinician. As a reminder, it does not have to be the person, let's say, who is your spouse or your life partner. It can be the person who you feel will best serve in this particular role.

What are the benefits of open communication? I think it should be clear by now that without open communication, your important concerns may just not get addressed. This visit, we're trained to be pleasant people, but it's not about being pleasant and it's not about chit-chat. It is about you and your Parkinson's concerns. With open communication, it really does foster trust. Your healthcare team feels like they know you, and you feel like they know you also. They're able to recommend treatment options and resources that might better fit your needs and concerns.

I'll thank you for joining us on this webinar, and I will turn things back over to Crista.

Crista Ellis 00:26:17
Thank you so much, Kathy. I really appreciate all that you offer our community in self-advocacy and why it's important and what that might look like. I'm looking forward to bringing Dr. Muhammad and Kathy back during our Q&A session. Now I'm pleased to introduce Dr. Taylor Rush, a clinical health psychologist at the Cleveland Clinic Center for Neurological Restoration. She serves as director of behavioral health services, leading a team that supports patients with Parkinson's and other movement disorders.

Dr. Rush helps individuals adjust to diagnosis, manage depression and anxiety, improve communication, which is a common thread here in all the presentations that we're hearing, and prepare for surgery like deep brain stimulation, also incorporating mindfulness to support emotional and physical well-being. You might recognize her from the Foundation's PD Health at Home Mindfulness Mondays. Please join me in welcoming Dr. Taylor Rush.

Dr. Taylor Rush 00:27:13
Thank you so much, Crista, and thank you, everyone, for being here today. I'm truly honored to be part of this incredibly important conversation because as someone who works embedded in a neurological center for movement disorders, I talk to patients a lot about their medical appointments, ones that they have that are coming up, ones that they've just recently had, and how did they go? I definitely see some common threads in terms of the types of things that people are concerned about.

Things that have been touched on already in terms of the limited amount of time that you have to review your concerns with your provider. There's anticipatory anxiety about, am I going to remember everything that I wanted to for this visit, and will my provider understand where I'm coming from? Will they potentially judge me for some of the concerns that I have? Because sometimes people may have symptoms or issues that are new and maybe scary or uncharacteristic.

Because we can see, with Parkinson's, impulse-related issues or sometimes issues with hallucinations or other things that are incredibly important to bring up to your provider, but people don't always like to talk about openly. We've discussed a lot about how we can do that in a meaningful, effective and efficient way. I want to talk to you all a bit today about some of those skills and strategies that I often share with patients and ways that you can incorporate them at your next visit.

You've heard this message already, but I'm going to really take it home that you are the world's leading expert on you. There is no one else who knows you better than you do. I think it's really important when you come into these conversations with your medical providers that you remember that at your core. Because I think a lot of times people may have this core belief that, well, the doctor knows best. They will let me know if something's important or not. No, you're the one who goes home each day and has to live your life in your body with your symptoms.

Therefore, what you have to say is truly the most valuable part of this visit in order to get what you need out of it. A few pearls of wisdom, per se, that I'll often share with patients is, one, sometimes healthcare professionals forget what they know. We live in these medical environments where we use jargony phrases that most people have no idea what it means, and a lot of abbreviations for things, and sometimes we forget that other people don't know these things.

Ask questions, even if they may feel, you know, we always say there is no such thing as a stupid question, right? Because you don't necessarily know everything coming in the same as your provider. Recognizing that sometimes you have to call that out and be able to ask for additional explanation on things. Your perspective and questions are not going to cause offense. I think sometimes people think that they may interject too much or they may talk too much or they may have strong opinions about things and they don't want to be seen as difficult. But truly, it is important to share your perspective and your questions and things that you're confused about. It doesn't make you look incompetent, and it doesn't mean that you're being difficult. It just means that you require further clarification, as most people do during these visits.

Dr. Taylor Rush 00:31:02
Of course, sharing your personal goals so that your provider understands what matters most to you. I have patients where their ability to play golf is incredibly important to them. Their ability to run after their grandkids and be able to care for them. Their ability to cook a home-cooked meal for their family. There are things that matter to them that they really want to be able to maintain for as long as possible. How do we do that? By making sure that we communicate those needs to your providers.

I'll also have this conversation sometimes that, while movement disorder providers, as Dr. Muhammad had mentioned, are not always easy to come by depending on where you're geographically located, it is important to find the right provider for you. Sometimes you may find someone who on paper looks fantastic, but interpersonally, it's just not working for whatever reason. It just may not be a great fit with your personality and theirs. It may be that how they prioritize things is different, their treatment approach may not fit well for your needs, whatever it may be. Recognizing that, again, you are in the driver's seat on this, and it's important for you to be able to find the right provider that works well with you.

I have some thoughts on how, you know, we've talked about what does self-advocating mean? How does it mean that you get your needs met? How does it mean that you're able to communicate your concerns effectively? How do we do that before an appointment? One thing I have found in working with physicians and other medical providers is that they tend to think in bullet points. I have written emails now much more succinctly and in bullet point form because that is what they respond to.

Sometimes being able to practice saying your appointment priorities out loud can help you to bullet point your speech a little bit so that you can say what you need to say in more efficient wording. There's the old saying, I would have written a shorter letter, but I didn't have time. When we aren't quite sure how we want to say things, we tend to talk more. Practice things beforehand so that you can say things as directly as possible.

Maybe sharing some of your appointment priorities with families or friends because they may be in agreement with you, or they may have their own perspectives that could be taken into consideration in terms of what they've observed.

Dr. Taylor Rush 00:33:54
Always know what your resources are. Again, the Parkinson's Foundation Helpline is available to all for questions about anything related to your Parkinson's journey. Sometimes it can help to be equipped with some of that information before your appointments. If there are articles that you've read or new research that you've seen, or there are certain education materials that you really want to review, look them over while you're waiting to speak with your healthcare team, either at home or in the car or in the waiting room. It can be a nice way to pass some of that time because, as we know, those trips can sometimes be a little bit longer than any of us want.

A few things to consider during the appointment. Again, it's important to make sure that you are able to direct your provider to the things that are most important to you today. If you do have your priorities written out, it can be helpful to then just share that with your provider. So, it's nice to see you again today, Dr. Smith. I have a list of some of my thoughts for today's visit. Can I share it with you? I actually work with med students quite a bit too, and we discuss how to elicit those concerns and thoughts from patients. We always tell them, if they have a written list, take it from them. Actually read it, and then that can also help to make the time more efficient.

Sometimes providers, there are some that are very direct and to the point, and there are some that are a bit more chatty, and they may go off topic. It's great to get to know them a little bit more as a person or have more conversation, but again, we're dealing with a short period of time for which you have your visit. We want to make sure that we get to all of those priorities, right? Saying, I know, Dr. Smith, that your time is limited, and I want to make sure that we have time to discuss not just my tremor, but I'm also noticing some increased freezing of gait, and that's really been bothersome. I want to make sure that we have time to discuss it.

Of course, if you feel that perhaps your provider is making a recommendation, but there might be some gaps in understanding why they're making that recommendation, so if they are recommending a medication change or they're recommending physical therapy, saying, okay, I understand that you are recommending this change in treatment, but I want to understand better why or how this is going to address my tremor. Help them to connect the dots a little bit so that they can provide some of that information because, again, sometimes physicians forget what they know.

Dr. Taylor Rush 00:36:45
If at times you may feel that your provider doesn't maybe fully grasp the concern or question that you have, maybe they misheard you, maybe they focused mainly on one piece and not another. Perhaps they can give great education about sleep and how that's affected in Parkinson's, but asking, but I do want to know more about what I can do to manage it, and especially if we could do it without maybe more medication. Giving them some direction on the topic that is of concern can then help them really dial into the most important parts for you.

This sheet is actually available now through the Parkinson's Foundation website, and there is a QR code here in the corner that allows you to use the camera app and take a picture, and it can put a link to the actual worksheet that we have here. This is the Parkinson's Foundation's steps to prepare for a Parkinson's appointment. It really breaks down all of the things that we've been discussing today in terms of understanding how to best utilize your time during your medical appointment and really making sure that you are looking at all facets of your life and the ways in which your functioning is affected by Parkinson's. To show you in a little bit more depth here, oh, and we do have a link in the chat now for downloading the worksheet if that is easier for you. Thinking about how Parkinson's affects your life in every area.

Yeah, so we know physically, yes, there are ways in which it affects you. But oftentimes when I'm working with patients, I ask, but what does that translate to? Someone can have tremor, but what does that mean? What does that mean for them and their life? Are they someone who does a lot of toy modeling and so fine motor skills have been incredibly important to them? Are they someone who really enjoys working with their hands and tools? What are the things that are affecting them in their everyday life, not just from a physical perspective, but how is it affecting how they see themselves and their mental health?

How is it affecting relationships? How might it affect any work that they may engage in? All the daily activities of living that they may do on any given day, as well as the fun stuff. The things that make life enjoyable, the things that make us happy, the things that help to increase the quality of life. Really understanding what the Parkinson's symptoms affect in all these different areas, reflecting on what's new in terms of those developments, what matters most to you in your life right now, and what you want to address and what your biggest concerns or worries or questions are in relation to these new pieces to your symptom management.

Dr. Taylor Rush 00:40:00
In part two, and sometimes this can be hard, and sometimes it's easy, choose your top three topics for the appointment. If we can get to more, I might label more, but often in anywhere from a 10- to 30-minute visit, these are not long appointments where we can sometimes address more than three things. So if I can only discuss three things with my healthcare team during this visit, what are the top three? Making sure to list them in that order and making sure to talk about them in that order, because sometimes, if the most important thing, as Kathy said, is left to last, then you end up with very little time to talk about the thing that matters the most to you. Making sure that those topics go in order of importance.

Remembering that what you do between appointments really does matter. How do you follow through on the recommendations that are given to you from your provider? How are you able to make sure that you are advocating through your own education about Parkinson's? How are you accessing resources, like coming here today to learn more about how to utilize your medical visits? How do you engage in exercise and support groups and monitor your own progress? For some people, they will jot things down as they go if they notice new patterns to their symptoms, or how quickly their medication is wearing off, or if they're noticing new symptoms. They write it down because so often we may think about something and then it flies out of our mind, and then we don't think about it again until it happens again. Being able to have these things written down sometimes can help to show a pattern that may be developing with new symptoms or progression of symptoms.

I often will tell people that thinking about the things that you do in between visits to maintain your physical, emotional and cognitive health is like putting tiny marbles in a very large pickle jar. It may not seem like any one day that you exercise or any one appointment that you go to may make a big difference, but the more you do these things over time, those tiny marbles will accumulate much more quickly into that jar.

We wanted to share with you all a brief case study on the power of self-advocacy. I'm going to introduce the story of Maria. Maria, for me, is an amalgamation of a lot of patients that I see, and so I kind of drew on a few different pieces that I think would be relevant for our topic today. Maria is a 69-year-old retired teacher who's been diagnosed with Parkinson's for roughly three years. She does have medication to help her manage her Parkinson's, and then she does engage in a little bit of physical therapy to help with balance and strength.

It's really important for Maria to be able to stay independent and be able to work in her garden. It's her joy every spring to be able to start doing that again and again, and she wants to be able to maintain that. Right now, Maria is concerned with noticing a bit of increased stiffness, and her sleep is becoming less restful and more interrupted, and she's having trouble both falling asleep and staying asleep for long chunks.

Dr. Taylor Rush 00:43:43
Maria comes in to see her neurologist in October, and she comes in feeling a bit nervous. It's been a while since she's seen her provider, and so she knows that she is going to have to go through the whole physical exam, and she's got to come downtown, and it's a whole process and takes half a day. She doesn't bring her current medication list because she assumes her doctor has it. She forgot that she's taking an over-the-counter herbal supplement for sleep because, again, she didn't bring a list of the things that she's taking, and it slipped her mind.

She kind of downplayed her sleep problems and some recent falls because she knows that this doctor doesn't have much time, and he seems very busy, and she doesn't want to seem like a difficult patient. Her neurologist decided that they wanted to adjust her medications yet again and suggested that she return to physical therapy. She said, okay, that sounds good. I appreciate your help, but doesn't necessarily fully understand why her neurologist is making those changes.

She leaves the appointment feeling a little confused, a little whirlwind, and isn't quite sure how to proceed with these next steps because she's not sure, actually, how she's supposed to. Is the PT supposed to contact her? Is she supposed to contact them? Why is she going again? Over the next few weeks, she notices that her symptoms are worsening, her sleep is worsening, and she's feeling rather frustrated and isolated because it's not going to be for another six months before she sees her neurologist.

I want to stop here for a moment and invite Kathy back to our conversation here. I want to have a little bit of time where we can reflect on, what do you feel like happened here in Maria's appointment? What do you feel like were some of the pitfalls?

Dr. Kathleen Blake 00:45:58
I think that this was a real missed opportunity for Maria, but also for the people taking care of her. It started very much with the fact that she was anxious. I think some of the strategies that we've already mentioned can be good ones to address and then mitigate, and really eliminate or significantly reduce the anxiety before she even gets to the clinic.

The second is that I think there was a missed opportunity to probably deal with, to me, the scariest issue, which is the falls. Many of us know that falls are a serious challenge for people with Parkinson's. So I wonder, was she anxious also, not so much the doctor's busy, but really she's anxious about having to admit that she's had a fall? She may want to downplay it because she doesn't want to be told, oh, it might be that your Parkinson's is progressing, or it might be that you need to stop doing some of the things, like gardening, that you love. Which is unlikely. She's just maybe going to be told how to do it differently.

Lastly, the issue of medication. I alluded to, come in with your list or pre-check it so it's already there because you can save a ton of time in terms of your visit. I wondered also if she was a little reluctant to discuss the herbals that she was taking. Maybe she's on melatonin, fine, but depending on the state that you live in, is she using CBD? Does she not want to disclose that to her provider? So, chock-full of opportunities that are missed and that you would hope can be recovered the next time.

Dr. Taylor Rush 00:48:07
Yeah, absolutely. I often see that too, where patients may sometimes minimize some of the symptoms that have progressed because they're concerned about what their provider may say or how they may be asked to limit certain areas of functioning that they feel like could impede on independence. So I certainly see that. I also see sometimes where people are on supplements that they're like, oh, but it's not a medication, so they kind of think, oh, that's not pertinent, even though it very well could be.

There are all kinds of interesting reasons why sometimes people don't disclose some of those additional things that they may be supplementing. I appreciate your thoughts on that, Kathy, and I can imagine that there may be some folks in our audience where some of these things definitely resonate.

Dr. Kathleen Blake 00:49:03
True.

Dr. Taylor Rush 00:49:04
Then let's see what happens to Maria in April. We call this her take-charge visit. Maria decides that she reflects on some of these things that didn't go quite well the first time. She comes to her appointment feeling more prepared because she now has a list of all of her current medications and supplements, including the sleep herbal remedy.

She has a diary of her symptoms and how they have manifested over the past six months, and she listed out her priorities: wanting to be able to improve her sleep, reducing some of that stiffness that may contribute to falls, and also being able to maintain that ability to tend to her garden. She shares that list, symptom diary and priorities with her provider.

She has a much more open conversation about her symptoms and how they are affecting her daily life, and really emphasizes that her goal is to be able to continue to garden. It's something that she greatly enjoys. We're heading into spring, and she wants to be able to do this as much as possible through the summer months. She asks for more clarification about her doctor's recommendations, and she asks for written instructions. I always tell people relying on your own brain for anything is always risky. So write it down. Write everything down. Have your providers provide written pieces to the visit as well.

Maria then leaves the appointment feeling much more empowered and much more clear about next steps for her care. As a result, it makes her feel more in control of her own health, as well as like she has a much better understanding of where she's at with her healthcare team and that they get what's going on for her and what's important for her. That way, if she does need to check in sooner than the next six months, they already have some context as to what is important to her and why, and what it is that she's struggling with.

Based on that, I would love to hear, Kathy, some of your reflections on what went differently this time for Maria.

Dr. Kathleen Blake 00:51:28
Let me get myself unmuted and back on video. First of all, I love the graphics, the fall and then the spring. I think that you now have really, side by side, two examples: opportunities lost or missed, opportunities fully taken advantage of.

Quite honestly, what that will do is that sets the stage for not just the next six months, but this is hopefully going to be a long-term relationship with the person who is taking care of you, if you are like me, a person with Parkinson's. You get more and more comfortable over time. I can absolutely guarantee it, with raising the tough questions. Maybe it's a mood disorder, but maybe you're also thinking about, am I still able to stay in my own home? Or am I able to continue to drive? This learning early gets you ready for whatever later looks like.

I think that I used to talk about it, it was almost as if we had like a direct brain connection, being able to have that kind of communication. Taylor, you're absolutely right. If any individual thinks they are the first person who has raised an embarrassing question or one that embarrasses them, no. Everybody in practice for more than, I'd say, a few weeks has heard it all. You will not be the first, you will not be the last, and you're the one who's holding back, not the clinician.

Dr. Taylor Rush 00:53:29
I agree wholeheartedly on that. So many patients will disclose things that they think are so unique to them and they feel incredibly embarrassed, and then, once they share it, I'm like, no, actually, you're probably the fifth person who's told me that this week.

Dr. Kathleen Blake 00:53:46
Yes.

Dr. Taylor Rush 00:53:47
I think just recognizing, yes, this is the time to be open and honest. It's being honest with your provider, but it's also being honest with yourself, and sometimes that's the harder part.

Dr. Kathleen Blake 00:54:00
I think it is. I would just say to people who are watching this too, and I alluded to it before, you don't have to consume every last morsel of information that's out there about Parkinson's, even on really wonderful websites, all at once.

The advantage is you have time. You're able to absorb at a rate that works for you. So don't feel like you have to know exactly what will happen 10 years from now. No, you don't. You need to be thinking nearer term.

Dr. Taylor Rush 00:54:41
Absolutely. Like you said, I think, live for today and take care of yourself. I think that resonates so strongly for so many people. Thank you for sharing that.

Crista Ellis 00:55:00
Thank you, Taylor, and thank you, Kathy, for walking us through an example of what might be a common experience for those of us who step into an appointment with a provider. Then you offered us an example of what Maria did to really advocate, using the language that we're learning here, for herself in the time of her medical appointment with her provider. That supports herself, yes, but it also gives direction and guidance for her provider to support her needs in the way that she's seeking support. I really appreciate the way that you both outlined that for our community here.

Dr. Muhammad, would you join us back for our Q&A? My friends, we have time. We have extended this webinar so that we can answer questions, and we have three experts here who are donating their time to answer these questions. Feel free to type into the Q&A tool. Chat works fine too. We're monitoring both. The first question that seemed to really bubble up in registration for all of you who signed up for our program today was: what questions should I be prepared to ask at an appointment, if any?

I'm just throwing that one into the court to see who catches the ball.

Dr. Kathleen Blake 00:56:23
I think we should have Muhammad answer that first.

Dr. Muhammad Nashatizadeh 00:56:27
All right, thank you. I think depending on the type of provider that you're seeing, sometimes you'll see that if you're seeing a movement disorder specialist, many of us have a very organized checklist. I've had patients over the years say, I don't really want to fill out these three pages of information of all these questions that the movement disorder specialist wants to ask, but that's a very comprehensive way to try to figure out very quickly and be able to spend the time on what is going on or what really needs to be addressed.

But if you are seeing a general neurologist, if you're seeing a primary care provider, I think the most important thing is going to be to address and ask the questions that are related to the problems you are having. It could be something that's not movement related. It could be something that you may not think is even related to Parkinson's disease.

Somebody may think, well, my knee pain is because I'm getting older and I've just hurt my knee, but it's possible that that could be dystonia from Parkinson's disease. It could be that you have osteoarthritis and that's getting worsened. Sometimes people are sort of in silos. They're like, I don't know which things I should ask about. Depending on what your biggest concerns are, even when people are in training, we all learn about what's called the chief complaint.

My mentor, who was a Parkinson's movement disorder specialist, used to ask everybody, even after decades of doing this, "What seems to be the thing that bothers you the most?" Rather than waiting for them to ask you that, say, "I want to tell you about the thing that bothers me the most." Then use that as a segue to ask whatever question you need. But this goes back to the theme of this whole talk, which is being prepared, coming with the idea of what are the three topics I want to ask.

Sometimes, rather than spreading all of the story about what's been going on with you, if you can say, these are the two or three things that I want you to know about it. Now, here are my questions. Is this something that needs further workup or testing to try to get to the bottom of what's going on?

Care providers are often diagnosticians. It's not just I'm having a symptom, here's a medication or a treatment. This is how people often end up on way too many medications. But I think if you focus on those things, that will be the priority.

Crista Ellis 00:59:00
Thank you.

Dr. Kathleen Blake 00:59:01
I might add one thing because the Foundation has done tremendous work looking at patient safety and hospital safety, and it's because we realize we're not as safe as we would like to be yet. We will get there, I hope, sometime.

For example, I had a total hip replacement about a year ago and wondered whether the pain in my hip was from Parkinson's. No, it wasn't. I also asked my movement disorder specialist, what do I need to expect in terms of when I'm under an anesthetic? It wasn't a general anesthetic. What do I need to expect in terms of I'm not going to be able to exercise the way that I have in the past?

You might not think that a hip replacement affects Parkinson's, but they can relate to each other. Don't pre-assume that the movement disorder specialist doesn't want to hear about your hip. They absolutely do.

Crista Ellis 01:00:10
Yeah. What I'm hearing is focus on what matters most to you. It's like the exercise regimen, right? Everyone wants to know what's the best exercise for Parkinson's, and what's the answer?

The one that you will do. The one that you will do. When we're framing up what questions do I ask my movement disorder specialist, what I'm hearing is focusing on what matters the most to you and developing your own priorities, your own list of questions, versus using a standardized set of questions for each kind of expert that you might be seeing in your healthcare journey. Did I reflect that accurately, Dr. Muhammad?

Dr. Muhammad Nashatizadeh 01:00:51
Yeah, I think that was wonderful.

Crista Ellis 01:00:54
Great. Taylor, anything to add about these questions to ask our providers?

Dr. Taylor Rush 01:01:00
I love what Kathy said about linking your health issues because I think you have to recognize you are a whole person, and oftentimes you don't just have Parkinson's. Those things can interact and affect one another, and that's important information for your provider to know. Recognize that, yeah, it's not just the Parkinson's sometimes that you end up discussing in terms of how things are affected.

Crista Ellis 01:01:25
We got another question from one of our members asking, which of my doctors do I ask which question? Let's talk about anxiety, let's talk about constipation. What about urinary issues? What about movement issues? Kathy, you really hit home on this: ask the questions, right? We don't necessarily have to distill or filter the questions based on the provider of a certain specialty. What I'm hearing is that it's important to communicate all of it to our providers. Is that an accurate statement to make?

Dr. Kathleen Blake 01:01:59
I think it's accurate, but don't be offended if someone says that's really outside of my area of expertise. What you want them to say is, and I will talk to Dr. so-and-so if you've already seen somebody for that condition. Or they will say, I will refer you to someone who can address that condition. The worst thing in the world is to leave somebody hanging.

Do not say, oh, I don't deal with that stuff. We all want to be treated as whole people, just as Taylor said. We're not just the sum of our parts.

Dr. Muhammad Nashatizadeh 01:02:48
I very much agree with that. I think that a lot of times when people are going through medical training, we're taught to stay in our lane, and this is your area and what is your scope of practice. But some of the most effective healthcare providers are people who actually incorporate the related areas with your care.

I think most people who have that additional training in movement disorders, who are movement disorder specialists, it's pretty routine for them to try to not only ask about and look into non-motor things, mood issues, sleep issues, cognitive issues, but also to know how to manage and treat those things. Even things like orthostatic hypotension, which I would say most neurologists would defer to cardiology to manage, is an area that a lot of movement disorder specialists are familiar with. Don't be afraid to ask those questions.

But I also know there are many movement disorder specialists who will refer people to those other specialists. It's not uncommon for somebody with Parkinson's disease to have a psychiatrist or a GI specialist or somebody who can really help when things are more challenging. That's just expanding your list of people who are able to help you as part of your personal healthcare team.

Crista Ellis 01:04:06
Taylor, I saw you go on mute and was just curious if that thought is lingering.

Dr. Taylor Rush 01:04:10
I was just in case I forgot and then started speaking, so more preemptive than anything.

Crista Ellis 01:04:20
We just started touching on the non-movement symptoms, and one of our members here is asking us to speak to the more psychological and emotional side of Parkinson's. Ilana, I'm sorry if I'm not saying your name correctly, but they write in: it seems like most of the care for PD patients focuses on the physical symptoms, tremors, stiffness, and balance. What or where is the best place to seek support for a person whose symptoms are more strongly psychological and emotional?

I'll ask this question in two parts. What is the impact of the non-movement symptoms in Parkinson's disease, and how do we get the right support for those non-movement symptoms?

Dr. Taylor Rush 01:05:05
I'll start. I would say that the impact is significant because if you are struggling with anxiety or depression, it does affect how you're then able to engage your treatment plan. You may forget to take medications, you may not then adhere to recommendations for physical therapy or exercise or other things. It's pervasive. Mood should certainly not be discounted or minimized because it's not a motor symptom, because it affects motor symptoms. It affects quality of life and relationships and functioning.

I would say that, to start, I would bring it up with your neurologist because, yes, they may not be specifically trained in treating mood and anxiety disorders, but I can guarantee you they know about them and they do encounter this on a regular basis. From there, it allows a platform for people to get referrals to the right resources, whether it's a psychologist, a social worker, a psychiatrist, so that they can then get the specific help that they need on those ends of their care.

Your neurologist may be much more motor-centric in terms of their exam, but it doesn't mean that those other pieces aren't relevant. It just may be something you have to drive a little bit more assertively.

Crista Ellis 01:06:38
Thank you, Dr. Rush.

I want to ensure that we address this question from Jean, or more of a statement, and perhaps we can have a dialogue around it. They share that my movement disorder specialist gets frustrated if I ask questions. He prefers to give a monologue on his own concerns, which seems to be what he thinks I may need to know. Sometimes he's correct, but often he misses the mark. After appointments, I'm usually frustrated and upset. I'd like to change this, but I don't know how.

Dr. Muhammad Nashatizadeh 01:07:15
Your concerns are not alone. You're not alone. This is why one of the things I'm very honored to be a part of is trying to recruit young bright minds and find people who are caring, people who are good listeners, to try to recruit them not only into neurology but into movement disorders.

You can have people who have knowledge, but I would say very generically, anytime you have any type of a relationship where there is a lot of emotional frustration, and especially when you think about working with a healthcare provider, people don't love to have to go see somebody and ask for help in many situations when they're struggling with something.

If they're already in that situation where they are now having a healthcare provider who's actually, in no uncertain terms, adding to the emotional frustration and problem, and then the provider also seems emotionally frustrated by what's going on, now you have two people in a relationship that is essentially dysfunctional. Because there's a shortage, many people tolerate this and they say, well, I would much rather be in a bad relationship than no relationship at all.

But in the end, people often have to make difficult decisions. Sometimes, rather than just saying abandon ship, sometimes having a very direct discussion about that. You know, I've been coming to see you for a while now and I just want you to know, I could really tell that you seemed frustrated by some of the questions that I asked.

Just like how, Crista, the way you were like, did I reflect this accurately? Continue to build those bridges of communication. It may be that that provider does care and is a helpful and kind person, but maybe is having a bad situation, and maybe it's just with you or maybe it was just with you that day. Maybe they can reflect, because you're reflecting back to them, that they need to come across more effectively. Rather than to just say, all is hopeless, you need to get a different person to care for you, build that bridge and be the bridge. Hopefully that person will recognize that and tone it down, walk it back a few steps, maybe even apologize for how it came across and reassure you that yes, I do want to help you, yes, I think I can help you.

But sometimes when I hear that people want to just have a monologue and do 90% of the talking, then that may be a personality type. Not every healthcare provider is every patient's cup of tea. When I first started and I was new in my community, people often said, you know, I've already been to one or two other neurologists and I didn't like how it went. My first question is, what is it that you need from me that I can try to be that person? Maybe I'm not able to be that person, but being able to have that communication and to manage those expectations, being very clear with them to say, this is what I need. I don't like how this went. Rather than tiptoeing around the issue, be direct. And that's hard.

Dr. Kathleen Blake 01:10:24
I would also say that there are perhaps better ways to have this conversation than if you come out like guns blazing with lots of anger and frustration. That is going to cause that person to withdraw, probably even further. Being able to come forward with statements like, "My relationship with you is really important. I really value it. I want it to work."

Then the we statements, you know, how can we make this work? What do you need from me to be able to get it working better? This is partly, though, where having that companion with you. If you yourself just don't have the wherewithal to say things like that, perhaps the companion who's come to visit after visit can say it for you.

Dr. Taylor Rush 01:11:34
I would just say logistically in terms of how you start the appointment, I tell patients sometimes, go on the offense. Give them that list. Give them the things that are important to you at the outset of the appointment so it's not them coming in and saying, okay, we're going to talk about XYZ today, and then before you know it, they're out the door in a blur. You give them that list up front so that they are very explicitly aware of what it is that you want to talk about that day. Sometimes that can help shift the dynamic a little bit. It's worth trying in order to maybe help advocate for your own needs up front.

Crista Ellis 01:12:16
It could be such a useful tool, Dr. Rush, to have it written, right? It removes the emotional or even the anxious side of things of having to say, this is what I need in our relationship for it to work.

Here's a piece of paper that says all these things, so that charge of emotional reactivity or defensiveness is really lowered. I really appreciate that suggestion. Being respectful of our time, Taylor, Kathy, Dr. Muhammad, thank you so much for sharing your expertise with us, for helping build this content and bringing awareness to the importance of being an advocate before, during, and after our appointments with our providers. Any final words to share before I close this out?

Dr. Kathleen Blake 01:13:05
I want everybody to share this recorded webinar with everybody they know who has Parkinson's and with their care partners. That's our goal, that it touches as many people as possible.

Crista Ellis 01:13:21
Thanks, Kathy.

Dr. Muhammad Nashatizadeh 01:13:24
Continue to be organized. Organization is a process itself. You can become more and more organized and do things in a different way. I think the strategies that we heard today can be very useful for people. Thank you very much for organizing this and for having all of us today.

Dr. Taylor Rush 01:13:42
Make sure that you value your own needs and recognize how important they are because this is your life and this is your ability to care for yourself in the best ways possible.

Dr. Kathleen Blake 01:13:55
We're here.

Crista Ellis 01:13:57
Share the resources, continue to advocate for yourself. This is your life, it's your time with your doctor, and make it worth the time. I really appreciate you all for showing up today, and thank you all for continuing to show up in a way that's allowing the Foundation to support you in a meaningful way. We're truly grateful to our experts, Dr. Taylor Rush, Dr. Muhammad Nashatizadeh and Dr. Kathleen Blake, and for each of you for being part of this important conversation. We hope today's program inspires you to take an active role in your Parkinson's care and to feel more confident heading into your next healthcare visit.

As you reflect on what we've covered, we encourage you to think about how you can take charge in your own care journey. Talk with your care partner, family members, friends, colleagues, peers, or even your support or exercise group about ways to become more engaged. And let me remind you, these are skills, right? It takes time to develop. Communication, strategizing and preparing do take time, and they do take effort. Be gentle with yourself as you build, like the muscles, as you build these skills in your own rhythms of your life. Sometimes it's the smallest step, like writing down a question in advance, that makes a really big impact.

Remember, self-advocacy is something you can build over time and you don't have to do it alone.

We also want to make sure you have the tools to take action. You can visit Parkinson.org/HealthCareVisits to download the preparation worksheet Dr. Rush shared with us, along with other helpful resources. These tools are designed to help you organize your thoughts, prioritize your concerns, and walk into each appointment feeling more prepared and more empowered.

We'd love to keep the conversation going. We're considering starting a thread on PDConversations.org focused on self-advocacy and healthcare visits. It's a space where you can share your experiences and also learn from others. If this sounds helpful to you, we'd love for you to join us on PD Conversations and be a part of the discussion.

Before we wrap up, just one last favor to ask of you to continue to fuel the programs at the Parkinson's Foundation. Your feedback is essential in shaping these programs. As the webinar concludes, a survey will pop up on your screen. Just take a moment, a minute, maybe three minutes, to share your thoughts and let us know what topics you'd like to see in future sessions.

We had beautiful questions shared in our dialogue today and some weren't answered. Please know that our Foundation is here for you. Call the Helpline to get those questions answered. The number's on the screen for you. Or if you're looking for guidance on preparing for your next appointment or just want someone to talk to, our Helpline specialists are a phone call or an email away. Together we can navigate this path and continue building a brighter future. Thank you again for being with us. Take care, take charge, and be well.