Dan Keller 0:02

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

Before kicking off today's episode, I would like to confirm that I have no relevant financial disclosures. This is the second of three podcast episodes within our atypical Parkinsonism podcast series, organized in collaboration with CurePSP, and designed to increase awareness and improve the care of progressive supranuclear palsy (PSP for short), corticobasal degeneration (CBD), and multiple system atrophy (MSA)—neurodegenerative diseases often considered atypical Parkinsonian syndromes.

Over half of people with PSP, CBD, and MSA are initially diagnosed with Parkinson's disease (PD) due to common early Parkinsonian symptoms, including bradykinesia, rigidity, tremor, and gait changes. They are rare diseases affecting less than 60,000 people in the US, compared to over 1 million people in the US with PD. Due to the lack of understanding and experience among healthcare providers, it takes an average of two and a half years to arrive at a clinical diagnosis of PSP, CBD, or MSA, and it is thought that only 25% of people with PSP, CBD, and MSA are accurately diagnosed. Currently, there is little to no formal training available on atypical Parkinson's for clinicians, and most become familiar with their assessment, diagnosis, and treatment on the job.

To address this gap, we have produced this podcast series, which is part of a larger program we have developed in partnership with CurePSP to educate the medical community. If you are a healthcare professional and would like to receive credit for your time listening to this three-part podcast series, please visit the Parkinson's Foundation Learning Lab. You can learn more about this opportunity at the end of this episode.

Today's guests, Heather Cianci, outpatient neurological team leader and founding therapist of the Dan Aaron Parkinson's Rehabilitation Center Penn Therapy and Fitness at Pennsylvania Hospital in Philadelphia, Pennsylvania, and Julia Wood, Director of Professional and Community Education at the Lewy Body Dementia Association, share how to apply interprofessional approaches to symptom management for PSP, CBD, and MSA, and share how to incorporate the healthcare team in assessing needs and crafting a plan of care for patients with these diseases. Julia Wood and Heather Cianci have disclosed that they have no relevant financial disclosures. What's the benefit of having an interdisciplinary care team for people with atypical parkinsonisms?

Heather Cianci 3:54

Well, our folks with the atypical parkinsonisms have various symptoms, various problems, so many different things that are going on that it quite possibly isn't possible for one person to be able to take care of them. So, things that I may look at through the lens of a physical therapist, I may not be thinking about something the way an occupational therapist or speech-language pathologist would look at it. And being able to talk to one another to really look at that patient as a whole, not just as that one symptom that I'm looking at, and being able to discuss quality of life—how do we all help this person together? I think really benefits them. It puts that patient at the center of the care.

Dan Keller 4:35

Also, is it important for family members to attend therapy sessions with their loved ones? Are they really integral to the care team?

Julia Wood 4:42

Absolutely, and I know in Dr. Pantelat's podcast, he talked about both the care team, as in the interdisciplinary psychologist and OT and PT and speech-language, but also at home. You know, it really does take a village on both ends. Often people are going to need assistance earlier at home, even if it's just cueing or assistance for safety. It really does take the coordination between both teams with both teams to make sure that all of the complexities are well-managed for people with atypical Parkinson's.

Dan Keller 5:17

Is it really an educational component for the caregivers, the care partners?

Heather Cianci 5:23

It's a huge component of what we do, and I'm going to give you a recent example. I have two gentlemen right now with progressive supranuclear palsy: one who lives alone in a three-story walk-up to a small efficiency apartment, and I have another gentleman who is living in a first-floor setup with his wife, who works at home. The ability to teach her how to speak to him, how to cue him, how to use his rollator, how to help him maneuver safely in the home, versus my gentleman who has no carryover with anything other than pictures that I can give him, signs, things like that.

The gentleman who has the family at home, who is helping, is actually flourishing—doing great, has really kind of stopped his falls, and is experiencing a much happier life. The gentleman living alone recently, unfortunately, fell backward into his bathtub, hit his head, and was found a day later by his family member. Unfortunately, these falls are so prominent, especially in our folks with PSP with the falling backward, but without the family's help and their supervision and our education for them, some really bad things can happen.

Dan Keller 6:32

What can be done to help decrease the amount of falls for people with atypical Parkinson's?

Julia Wood 6:39

I think it's really twofold. As an occupational therapist, I really look at the person factors—so we know that falls are a big part of these conditions—but also the environment. This is where, in full disclosure, Heather and I treated together for many years in our interdisciplinary clinic, and the two of us really had to put our heads together about what balance challenges they're going to have. She had to look at what appropriate gait device there might be, cueing for that gait device, training the family. I had to look at using that said device in different activities of daily living, but then also looking at the environmental hazards: throw rugs, even lighting.

We know that with these conditions they often have a lot of visuospatial issues, so their vision in the environment can be an issue, as well as cognition. We can see some impulsivity at times, especially with progressive supranuclear palsy, where they may not remember to use their assistive device, like their walker, when they get up to move. So then we always have to put our heads together as PT and OT and see how can we train the family, how can we make the person as safe as possible in their environment, in their home, and in their community.

Heather Cianci 7:52

We also have to think about things from a different standpoint that might be sort of out of our realm sometimes. I think some PTs and OTs aren't prepared to think about people who have bowel and bladder issues, and those autonomic problems with people who have MSA can be very problematic. Having orthostasis—so when they get up and move, they lose that blood pressure, it bottoms out, and they can pass out, they can fall. A lot of changes from that, but also, as well, with bladder issues, where the focus is, "I need to go to the bathroom, and I need to go right now," and I'm not thinking about how I can safely get to the bathroom.

So, a lot of times we will team up with other specialists within our profession, such as a pelvic floor therapist, who could be an occupational or a physical therapist. So, we really look at it from that whole standpoint of the person, the environment, the people around them, and I often say to my patients, you know, if there's something I can't change in you, unfortunately, due to the disease, I need to change what's around you, because it's my job to keep you as safe and as functional and as happy for as long as possible.

Dan Keller 8:53

Is there ever a component of timed voiding so people don't have urgency?

Julia Wood 8:58

Yes, absolutely, and that's something a lot of times we'll work on early on, anyway, as a timed voiding schedule, but sometimes that's not enough. As Heather mentioned, they may need to see a pelvic floor therapist. Often a urologist might be brought in as part of that care team as well. And then different incontinence products or adaptations to the environment—maybe having a handheld urinal or something closer by if the bathroom is really far away. Often we have to look at the safety in the bathroom too. So, once they get in the bathroom, that they can find the toilet from a visuospatial perspective, that they can be safe transferring to it, especially with that urgency, like Heather mentioned.

Dan Keller 9:36

Are there overlaps and differences among the atypical Parkinson's, both in symptoms and approach and treatment on your end?

Heather Cianci 9:46

When we think of the atypicals, I know we like to group them together, but I can say for my team we look at each person as an individual. So, even though I have an idea as to what may be prominent or common in someone with MSA, it doesn't mean that I'm just looking for those things; I'm going to keep an eye out for what are the functional problems first and foremost.

Probably the commonality in all of them is the sooner you can get them into treatment, the better. Unfortunately, as Dr. Alex was talking about, a lot of these folks are misdiagnosed, and we do get to them later. If we do have the ability to get to people soon after diagnosis, starting therapy sooner rather than later is paramount in all of these diseases, because we need to get them moving, we need to get them socializing, we need to, like Julia said, start thinking about things before they become a problem.

Dan Keller 10:40

Are there any exercises that are particularly good for people with atypical Parkinson's?

Heather Cianci 10:46

So, we know in the world of Parkinson's disease, we have just a wonderful amount of information that's out there, so we tend to glean most of our information from that, because of the huge amount of randomized controlled trials. Unfortunately, with the atypicals, we do not have that. We are very limited in what the research does to guide us, but I think, as therapists, anecdotally, we can speak to the importance of a healthy body.

So, one of the first things is aerobic exercise—getting people to do something that gets the heart rate up. And I'm not talking about people going out and running, or people, you know, diving into the pool and doing laps and laps; you could do a wonderful seated program with music, with stimulation, by moving the arms and legs and moving in the chair, so we can always adapt it. So, I would say number one is aerobic.

The second one we know is strength, and I would say strength is there just because people stop being active—they stop being able to work, they stop being able to drive, they stop going out. And when you sit and you don't move, you get weak. We know this in this population; we know this in every population, as to what happened during COVID, when we all stopped moving around, and this was even worse for our folks with the atypicals. So absolutely strength training—if I had to pick those top two that people could really do at home, it would be aerobic and strength.

When they're with a therapy team, whether it's OT or PT, we're trying to challenge their balance, we're trying to work on protective balance reactions again sooner rather than later. Another thing to add to that for this population too—and there's been some research—is eye gaze exercises. We know that, especially with the gaze palsy issues with progressive supranuclear palsy, keeping the eye muscles moving and having people work to continue to track and use their eye muscles is very, very important as well, and it can be something fun. I know people think sometimes exercise is boring. I'll give you an example of one of the things that we did a lot in our clinic is simply having a patient standing on an unstable surface, and then looking for different things around the room. So we might hide different objects and have them work on looking for things, or saying, "How many red objects can I find in this room? How many places would I normally sit in this room?" and having people look at all of those things. "What shapes are in this room that I can find?" So it's something that may not necessarily feel like exercise, but still could be very beneficial for them.

Dan Keller 13:06

Getting back to safety and falls, do people make home visits to check out the home environment to make it safe—throw rugs and doorways and all sorts of things?

Julia Wood 13:15

Yes, that's something that's very common. So often an occupational therapist and physical therapist will go in and do a home safety evaluation. Sometimes this can happen through the local corporation or area agency on aging too. So, really looking at all of those factors, just like you're saying, considering where handrails are placed, grab bars, those throw rugs, you know, even just the obstacles in the environment. Because with that visuospatial issue that we see so often, an area might seem like you can navigate it fine, but when you're having trouble, a lot of times things might appear closer to them than they are, or further away, and so it's important to have open pathways and good lighting, and all of those safety hazards, like those throw rugs and tripping hazards, eliminated.

Heather Cianci 14:02

And it doesn't have to just be a home care therapist. If you have a patient who has Medicare Part B, we are allowed to see patients in the home for those home safety assessments. So that's just an important thing for people to know.

Dan Keller 14:16

Getting back to the topic of interdisciplinary care team, what framework is there for delivering care to people with PSP, CBD, and MSA? How's it organized? Who coordinates it? What's the framework?

Heather Cianci 14:32

So I can speak about how it's run at our clinic at University of Penn. We consist of the therapy team (PT, OT, and speech), we have a nurse, a nurse practitioner, and a physician. We have a palliative care physician as well, social worker, nursing. And it seems like that's a lot of people to coordinate, but when you have a main focus and a goal of patient-centered care, it actually flows pretty beautifully if you have one person who's sort of taking the lead.

And I would say in our clinic, it probably comes down to our nurse practitioner and our social worker. So someone does need to take the lead to make the phone calls, to establish the relationship, to set up those appointments. And then we all work together as to what are the times that are going to work that we're going to see these people. So there's a lot of pre-planning that goes into that day when you actually see the patient. In speaking from experience, I think you get to know your team members so well that you're able to kind of think ahead as to what they're going to need and what they're going to do, that we just really get it down to a fine-oiled machine. And that might not be the start for everybody, but I think once you start seeing how it works and you're able to communicate well together—that's the key—you can really make some wonderful changes in the lives of those patients.

Julia Wood 15:44

And I think it's important to note that that's not always a top-down approach. I think that people still have this kind of hierarchical model that the doctor is the one who drives every single referral, but when you have a fully functioning interdisciplinary care team, we're all going to catch different aspects of needs for that person. So I may go to the physician and say, "Hey, they really need that home safety evaluation," or "They need that swallowing assessment," or whatever the issue is. So often it's other members in the team that kind of have to raise the flag for that referral, and I think that's something that gets lost sometimes when I listen to discussions on interdisciplinary care. It's like we still think that the doctor drives everything, and we kind of all have to have our eyes and ears out on the ground and communicate with each other to ensure best care.

Dan Keller 16:30

Ultimately, does the doctor have to write the order, or can it be generated from an OT or a PT and proceed without intervention of the doctor?

Heather Cianci 16:40

So, if you're not part of an interdisciplinary care clinic, and let's say someone has PSP and they want to see a physical therapist, depending on what state they live in and what insurance they have, physical therapists do have something called direct access, where you can see a physical therapist without a prescription. They would need, again, though, to check with their insurance company to see if this is a benefit they have in their state. For our clinic, we do make sure that everyone has the prescriptions ahead of time, just because we want to make sure that everything is covered by the insurance and these family members aren't left with a high cost.

Dan Keller 17:14

Besides one-to-one communication—the OT with the PT or with the physician, or whatever—does the team get together on a routine basis and review what's going on?

Heather Cianci 17:25

At the completion of the day, when we have our atypical clinic, we do get together and discuss. Everyone has the same amount of time to voice their opinions, their concerns, their questions. It's pretty amazing as to when you'll hear from someone—it might be the social worker said, "Well, the family member told me this," and we'll think in PT, "Wow, that wasn't expressed to me that way; I wouldn't have known that had they not talked to you."

So, again, even when the patient is not with us in the room, we're still learning about the patient and the family member, and I think that's just a critical service that has to be put forth. And then everyone understands, kind of, where are we? What's the roadmap moving forth with this patient? Because it's not a once-and-done. When you have atypical Parkinson's, you're going to need substantial care over a long course of time.

Dan Keller 18:12

Even with Parkinson's disease, each disease and each person is individual—it can take its own course—but there you've got a lot of people to study; the incidence is much higher. Here, the incidence is very low. So, are there rules? Are there guidelines? And if not, how does this differ from dealing with Parkinson's disease?

Julia Wood 18:35

Yeah, that's a really, really good point, that there aren't specific guidelines or many research articles that get into directives for people with atypical Parkinson's. So this is where creativity, I think, really comes in on the part of the clinician. I think that you have to look at all of the research, as Heather mentioned, that's there for Parkinson's and the little that we have on atypical Parkinson's, and then we really have to be creative and think on our feet.

Number one is safety. I think that always has to be first and foremost. We need to realize too that it's a much more rapid progression with these conditions, so it's important to get in there early and intervene often. We're not going to see them every six months a lot of times, or once a year; it's probably going to be more like every three months, possibly. It's really working together as a team to try to see what you can extrapolate from the research, but then also really using your best clinical judgment and also looking to the family to collaborate on what their needs are.

Heather Cianci 19:30

What their wants are, because ultimately, I think sometimes what gets lost when we think about these complex conditions is we get lost in the symptoms. What's really, really important is that engagement for that person, and what's meaningful and relevant to them. So, you want to look at the things they've lost or given up, maybe things that they would like to continue to do. Can you adapt how they do that?

The ultimate goal is keeping that person engaged and active and maintaining their quality of life. It's looking through the lens of function, not just from the standpoint of "can they get up from the chair, can they walk to the bathroom," but can they sit comfortably in a chair and still exercise, can they use a wheelchair to be able to get out into the community and do the things that they want to. Like Julia said, with adaptations and modifications, it's functioning as a person in their home, a person in their community, a person in their book club. However that function is seen through their lens. We don't want to think about it just as mobility; it's functioning in life.

Dan Keller 20:33

Even though there's not as much evidence here as, say, with Parkinson's disease, there is some evidence. Are there algorithms or decision trees that you follow?

Heather Cianci 20:45

Unfortunately, right now there isn't anything that's out there for us. There are, like I said, limited research studies. I would say yes, probably start with your aerobic exercise. There is some research out there that suggests if it is a lower-level patient, you might want to use the Berg Balance Test.

I am not of the thought process that I want to put everyone in a silo. I really want to sit in front of that one person, speaking with them and figuring out how to test them individually. So it always comes back to me for the function of the person—function in mobility, but function in life. And when they tell me what they can't do, I figure out what is the outcome measure that's best for them, for me to test them, and then it's my job to figure out how to help them to get back into doing what they're doing. So it goes back to what Julia said: creativity, being able to think on your feet, and being able to talk to that team of people as to how you can make those things happen.

Dan Keller 21:40

How does maintenance therapy change from early stages to late stages?

Heather Cianci 21:45

So, I think a lot of therapists—and Julia and I have spoken about this a lot—fear the word "maintenance." There was a misperception for a very long time that many of the insurance companies would not pay for quote-unquote "maintenance therapy." You might want to think about it as preventative therapy. So what are we trying to do? It may not be that we're trying to attain a goal of making something better, but what we're trying to do is attain a goal of not letting something get worse.

We don't want that person to lose the ability to do something, we don't want the falls to continue, we don't want injury to happen. So maintenance therapy can absolutely happen. There are guidelines, at least for physical therapists, through the American Physical Therapy Association, and there are ways to be more educated about that if therapists want to learn more.

Dan Keller 22:33

What are appropriate outcome measures? Maintaining or staying at the level they're at, staying safe, or are there others?

Julia Wood 22:42

Absolutely, I think that that's something that gets lost sometimes, and some of this comes down to billing and reimbursement. We also want to look at what the person wants to do, so there are things like Goal Attainment Scaling, for example, that is really standing out in the research and in a lot of different methodology as a way to take something that that person wants or needs to do and make the goal specific to that individual.

For this population, for example, a lot of times the goal is not going to be independence; it's going to be "with cues"—you know, with a verbal cue or with minimal physical assist—that they're going to do that sit-to-stand transfer. And so a lot of it, I think, comes down to setting appropriate goals and how to find appropriate outcome measures. There's other things too, like the Bangor Goal Setting Interview, which also helps with this; the Canadian Occupational Performance Measure; and the Patient-Specific Functional Scale. And I think when you go from that place of "what does this person want to do, what's meaningful to them," then you can see if maybe there are other outcome measures, like looking at balance, the Timed Up and Go, maybe things like fine motor coordination that you might want to do. But ultimately, like Heather said, the goal is that function. So you want to see what am I going to do to get them back to doing this functional activity, not just some rote improvement on objective measures.

Dan Keller 24:00

Are there screening tools that would prompt you to bring in other medical specialties—ophthalmology, urology, respiratory, speech-language kind of consults?

Heather Cianci 24:13

So oftentimes we will get people who come to us with a prescription that says they have Parkinson's disease, and it may be that we're starting to notice—even though they were newly diagnosed with Parkinson's—they're having way too many falls too early in what would be typical for Parkinson's. We're starting to notice that there are subtle visual problems with the gaze—so the loss of the ability to have a vertical gaze in people with PSP—that's not typical of our patients with PD.

So, there are certain things that you notice, and then you say, okay, it's time to pull in a different team member. Maybe if I'm seeing some more cognitive issues here, maybe I need to get occupational therapy and speech involved. If I'm seeing these visual problems, maybe I need to get the neuro-ophthalmologist involved with this.

Julia Wood 24:56

And also mood. So often we'll see people are really struggling with depression and anxiety, and sometimes that can even be a barrier to them accessing therapy or following the recommendations from therapy. So, I think having a counselor, a psychologist, or someone that you can refer to is very important too, so that you make sure you're addressing those challenges—be they just mood changes as a symptom, but then also those coping strategies of just dealing with a progressive illness.

Dan Keller 25:23

One thing that the Parkinson's Foundation has for people with Parkinson's disease is the Aware in Care kit. Would that be useful here too? I mean, do these people end up in the hospital, and would it be good to have a record of where they stand and what they're on and all that? Seems like the kit shouldn't be just restricted to PD.

Heather Cianci 25:44

Absolutely. A lot of our folks with the atypicals are taking the common medication for Parkinson's disease early on in the course of their illness with Sinemet. So, yes, it is important for them to get that medication on time. It's important for those hospital teams to know that the symptoms can vary and that also there is a higher likelihood of falls and cognitive changes early on, and so they really need to be aware of this for safety.

Dan Keller 26:09

What are the key takeaways?

Julia Wood 26:11

I think one is to intervene early and often. I think you really want to get that care team in and get rehab started. One thing that I hope to abolish in my lifetime is this idea of somebody not being quote "bad enough" for therapy. And we hear that both with Parkinson's and with this, and I think it becomes almost a type of denial where it's like, "Well, I'm not that bad yet." But the whole point of coming to therapy is so that you hopefully don't get that bad, and we keep you engaged, and we keep you doing the things that you love and prevent those falls and injuries. So, I think one of the key takeaways is early and often intervention, and really recognizing that it does take a care team to manage these complex conditions.

Heather Cianci 26:55

And I would agree with Julia, and in part saying put that family into that care team sooner rather than later. Oftentimes, people will drop their family member off at therapy, maybe run some errands, maybe it's some time for them to get away. Unfortunately, we need those people there. They need to be educated. Oftentimes, they're frustrated; they may need social services. Then we can help to jump in there. So, yes, early, often, and the village is not just medical professionals—it's that family team as well.

Dan Keller 27:32

We hope you were able to listen to our first episode of the Atypical Parkinson's podcast series, where we cover common early symptoms of PSP, CBD, and MSA, and the overlaps and differences with Parkinson's disease. Be sure to tune into the third and final episode of this series, where we will discuss the unique care needs of people living with PSP, CBD, and MSA, and resources to support quality of life for patients and families.

You can also visit our PD library at parkinson.org/library to read our fact sheet on the topic titled Parkinson's Disease versus Parkinsonism, as well as visit CurePSP's website at www.curepsp.org to learn more about PSP, CBD, and MSA and other resources available. And if you are a healthcare professional seeking accreditation for this podcast series, you can visit the Parkinson's Foundation Learning Lab at education.parkinson.org/atypical to log in and claim your continuing medical education credit.

If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO. That's 1-800-473-4636. Thank you for listening.

Heather is the founding therapist of the Dan Aaron Parkinson’s Rehabilitation Center (Penn Therapy & Fitness) at Pennsylvania Hospital in Philadelphia, PA – a partner with the University of Pennsylvania’s Parkinson’s Disease and Movement Disorders Center (PDMDC). Heather received her Bachelor’s in Physical Therapy from the University of Scranton in Scranton, PA and her Master’s in Gerontology from Saint Joseph’s University in Philadelphia. She has been a physical therapist since 1994 and received her board certification in geriatrics in 1999 from the American Board of Physical Therapy Specialties. She is a LSVT® BIG certified clinician, PWR! certified clinician, graduate of the Rock Steady Boxing for Parkinson’s, certified in Music and Memory®, and is an ACTIVATOR® Trainer. She serves as an LSVT® BIG Faculty Instructor for LSVT Global, Inc., and Co-coordinator and PT Faculty for the Parkinson’s Foundation’s (PF) Team Training Program. Heather has authored book chapters on rehabilitative strategies for PD and Frontotemporal Degeneration. She also is the author of the PF educational manual “Fitness Counts.” 

Heather has taught for several CEU organizations including Medbridge and Elite Learning. Her research includes movement strategies for bed mobility, falls, freezing of gait, and functional movement disorders. She teaches about rehabilitation and PD at Thomas Jefferson University (Philadelphia, PA) and Neumann University (Aston, PA). Heather is a former board member of CurePSP and team member of both the COPE Clinic (Comprehensive Outpatient Atypical Parkinsonism Evaluation) and Huntington’s Disease Clinic at the PDMDC.

Julia Wood, MOT, OTR/L graduated with her master’s degree in occupational therapy (OT) from the University of Minnesota after completion of her clinical fieldwork in neurological rehabilitation from the Mayo Clinic, St. Mary’s Hospital campus in Rochester, Minnesota. Julia has an extensive clinical background in rehabilitation, interdisciplinary and palliative care in Parkinson’s disease and related dementias. She served as the lead OT at the University of Pennsylvania’s Parkinson’s disease and movement disorders Center of Excellence for ten years where she continues to develop and facilitate community engagement programs for people with PD and related dementias and care partners.  Julia is currently the Director of Professional and Community Education for the Lewy Body Dementia Association and serves as certification and training faculty for the LSVT BIG® program.  Julia has served as faculty for the Parkinson’s Foundation’s Team Training for Parkinson program since 2016 and served on the Parkinson’s Foundation Rehabilitation Task Force in 2021. She co-authored the first American Occupational Therapy Association Practice Guideline for Adults with Parkinson’s Disease in 2022. Julia served on the steering committee for the 2022 International Lewy Body Dementia Conference and on the Comprehensive Care Subcommittee for the 2023 World Parkinson’s Congress (WPC).

Crista Ellis 00:00:00
Hello and welcome to the Parkinson's Foundation's webinar on resources for veterans with Parkinson's. I'm Crista Ellis, your host for today's webinar. Helping me behind the scenes are my colleagues Jenny Fearday, Danielle Agpalo, and Laura Cameron. We are recording today's presentation. You will receive a follow-up email from us with a link to today's recording and other resources in the coming days.

The mission of the Foundation is to make the 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. We are 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 provides weekly educational and wellness programs virtually through our PD Health at Home series, including Mindfulness Mondays, Wellness Wednesdays, and Fitness Fridays. You can learn more and register for these programs by visiting Parkinson.org/PDHealth. My colleague has put a link in the chat for you all.

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.

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 this program possible.

Today we kick off part one of a four-part webinar series for our veterans living with PD. Today's discussion will focus on the resources and support services that veterans have access to through the VA and the Parkinson's Foundation. We will continue this series on August 31 with a focus on mood changes. On October 26, our webinar will offer tips and support to help us prepare for the future, and to conclude the series on December 14, we will discuss how, for some veterans, environmental exposure and toxins can increase the risk of PD. You can learn more about these events and register to attend at Parkinson.org/veterans.

Crista Ellis 00:02:56
We understand the vastness in navigating Parkinson's disease as a veteran, which is why we have designed this educational opportunity as a series. Today we will focus highly on resources and access to care. If you have questions outside of today's topic, please plan to attend one of our future events or contact our Helpline at 1-800-4PD-INFO.

As we step into the formal webinar, please know that we are recording today's presentation. You will receive a follow-up email from us with a link to today's recording and other resources in the coming days.

To start us off, we welcome Gretchen Glenn, a social worker and associate director of education for the Philadelphia Parkinson's Disease Research, Education and Clinical Center. Gretchen focuses her practice on adjustment to chronic illness, disease education, supportive counseling, resource coordination, case management, and community outreach for veterans and families diagnosed with Parkinson's disease and related movement disorders in their families.

Ms. Glenn also serves as chair of the National VA Parkinson's Disease Consortium Education Subcommittee, which is responsible for providing educational opportunities to national VA healthcare providers on the care of veterans with Parkinson's disease and related movement disorders.

Ms. Glenn is passionate about helping others and has dedicated her career to helping people cope with chronic illness and end-of-life issues. Gretchen, thanks for sharing your time and knowledge with us today.

Gretchen Glenn 00:04:23
Thank you, Crista, and good afternoon, everyone. I'm going to go ahead and bring up my slides.

Okay. Again, thank you for the introduction, and thank you for having me present today.

Today I'm going to review who the PADRECCs are, our consortium center network and the care we provide, as well as a general overview of some of the resources available to veterans receiving care through the VA healthcare system.

The Parkinson's Disease Research, Education and Clinical Centers, also known as the PADRECCs, were formed in 2001 to revolutionize services for then-approximately 80,000 veterans afflicted with Parkinson's disease. This number has since grown to approximately 110,000, and data collection is underway to get a more updated number.

Each PADRECC is designed to deliver state-of-the-art clinical care, pioneering research and educational programs to an expansive geographic region. These centers are staffed by internationally recognized movement disorder specialists and researchers. The six centers of excellence are located in Philadelphia; Richmond, Virginia; Houston, Texas; West Los Angeles; San Francisco; and a split center in Portland/Seattle VA Medical Centers.

As you can see by looking at this map, the PADRECC centers create a necklace around the United States, which makes it difficult for veterans living in the middle of the country to access Parkinson's care. You can see that the PADRECCs are all represented as the red dots. As a result, the PADRECCs developed the National VA Parkinson's Disease Consortium Network.

In 2003, the PADRECCs introduced the National VA Parkinson's Disease Consortium in an effort to promote awareness across the VA healthcare system by providing professional networking, mentorship and training opportunities. It is comprised of VA physicians, nurses, pharmacists, social workers, physical and occupational therapists, and other allied health professionals with an interest in Parkinson's and movement disorders.

Gretchen Glenn 00:06:36
The consortium center network was then launched in 2006 to broaden the impact of the PADRECC mission. These designated centers offer veterans convenient access to specialized movement disorder services within all of our Veterans Integrated Service Networks. These centers are staffed by movement disorder specialists or clinicians with vast experience and interest in the field of movement disorders. Together, the six PADRECCs and 57 consortium centers provide convenient and state-of-the-art care to veterans throughout the country.

As Crista mentioned, in 2020, the PADRECCs were fortunate to form a partnership with the Parkinson's Foundation. As you can see from this map, many of the Parkinson's Foundation Centers of Excellence are close to VA PADRECCs and our consortium centers. The PADRECC centers are represented by the green dots. The blue dots are the PF Centers of Excellence, and the red dots are the consortium centers. You can see that we all work closely together.

Now I just want to go over our PADRECC missions of clinical care, education and research.

Clinical services include a multidisciplinary team approach, and teams can include an attending neurologist, fellows, nurses, geriatric psychiatrists, neuropsychologists, social workers, pharmacists, and physical, occupational and speech therapists. We all work together to provide care for our veterans.

Care can include comprehensive movement disorder neurological evaluations, diagnosis and treatment of movement disorders, DBS for Parkinson's disease and essential tremor, neurostimulation for DBS, Botox injections, neuropsychological assessments and disease education.

It can also include psychosocial assessments, palliative care discussions, which include advance directives and goals-of-care conversations, and referrals to physical therapy, occupational therapy and speech therapy for things like falls, balance issues, home modification needs, and speech and swallowing issues, just to name a few of them.

Gretchen Glenn 00:08:58
The PADRECCs also have a robust telehealth program to provide movement disorder care to veterans who are unable to travel to a PADRECC or a consortium center. We're able to do that in a few ways. Prior to COVID, the most common way was to provide care to veterans who would go to a local VA medical center, a VA outpatient clinic or a veterans state home, and they would have a video visit with one of our movement disorder specialists at the VA.

Since COVID, we have greatly expanded our ability to provide what we call VA Video Connect Care, which is basically bringing the care into the home through video. The veteran can be located at home or anywhere they may be located, and they are able to connect with a movement disorder specialist via video to have their evaluation done. We also have a psychiatric consult service to over 52 VA medical center sites, and that is run by Dr. Daniel Weintraub in collaboration and funded by the National Telemental Health Centers.

He provides initial psychiatric consult service for patients with Parkinson's and psychiatric cognitive symptoms. Psychiatric symptoms in patients with Parkinson's have a large impact on quality of life, and managing these symptoms can be difficult and should be done by a subject matter expert. We're fortunate to have Dr. Weintraub with us and available to do that.

Telehealth programs for veterans with Parkinson's are continuing to expand throughout the VA system, especially to meet the needs of rural veterans. There have even been a lot of programs focused around the rehab needs that can be done via telehealth.

Just to review briefly some of our education programs, we have two arms to that. We have patient education and professional education. For patient education, the PADRECCs do monthly virtual support groups, annual symposiums on specific topics related to Parkinson's disease, distribution and creation of print and media resources, and a lot of community outreach. If you were to go to our website, to our Patients and Families page, you'd be able to see a listing of our support groups, and anybody can join those, whether you're being followed at a VA PADRECC or consortium center or not. You're welcome to join.

Gretchen Glenn 00:11:22
We provide a lot of professional education programs and mentorship. We do have a movement disorders fellowship program where we train medical doctors who have received their MD already and give them further education and experience in working in Parkinson's disease and movement disorders. We also offer two movement disorder webinars a year, and we offer monthly case conferences and journal clubs to our consortium center network.

This is just a snapshot of the PADRECC Veteran and Family page, where you can see some of the resources that are available, such as our YouTube video series, which are short videos featuring veterans and PADRECC staff, highlighting different aspects of Parkinson's disease care. We also have different education brochures. Again, here's a listing of some of our support groups, and we recently added, through the Richmond PADRECC, a young-onset group and a caregiver support group.

Just to touch briefly on research, I wanted to mention some of our research initiatives right now. The PADRECCs really do have a robust research program, and this is not an exhaustive list, but some of the areas they look at are surgical interventions, drug therapies, gait and falling issues, depression and other psychiatric problems, non-motor fluctuations, exercise, basic science, which is more lab studies, looking at drug-induced parkinsonism, which is long-term exposure to antipsychotic medications such as lithium and Haldol, gene mapping and genetic predictors, biomarkers and, of course, toxin exposures.

Now that I've gone over who the PADRECCs and consortium networks are, I wanted to touch on how you can access VA care. The first step is really to see if you're eligible for VA healthcare. A veteran may be eligible for VA healthcare benefits if he or she served in the active military, naval or air service and did not receive a dishonorable discharge. Some eligibility factors are service history, VA disability rating, income, as well as some other factors. The recent PACT Act has also expanded eligibility for veterans. I always tell veterans it's definitely worth applying to see if you're eligible.

Gretchen Glenn 00:13:52
If you're a current or former member of the reserves or National Guard, you must have been called to active duty by a federal order and completed the full period for which you were called or ordered to active duty. If you had or have active duty status for training purposes only, you wouldn't qualify for VA healthcare. But you can learn more by going to the VA eligibility website that I have listed here to learn more about the eligibility criteria, as well as be able to apply.

So eligibility and care at a PADRECC or a consortium center: first off, a veteran must be enrolled in the VA healthcare system to receive care through a PADRECC or a consortium center.

Once you're enrolled, you can go to our Getting Care page and choose the PADRECC or consortium center closest to you that you would like to go to receive care. Then you would ask your VA primary care provider or your VA neurologist, who can make a referral or a consult to a PADRECC or a consortium center. Or you can even self-refer by calling the PADRECC or consortium center directly. On that Getting Care page, if you click on the center of interest, you'll see the contact information there.

If you need any help at all with that process, you can call our PADRECC and Consortium Hotline at 1-800-949-1001, extension 205769. We would be happy to help you.

Before I move on, I want to go over some important VA lingo, and that is: what do service-connected and non-service-connected mean? These terms are important as we move on and talk about the different resources that are available, and they're terms that you'll commonly hear throughout the VA.

Service-connected status refers to veterans who are disabled by an injury or disease that was caused or aggravated by military service or occurred while serving in the military. Parkinson's disease is considered a presumptive condition for some veterans, which means that it's presumed that the disability is caused by your military service if you served during specific wartime and/or were exposed to certain toxins. Veterans who are service-connected will receive disability compensation, which is a tax-free monetary benefit, and the amount of compensation is based on the determined level of disability.

Gretchen Glenn 00:16:16
Non-service-connected status refers to veterans who have a disability or health issue not related to their military service. Veterans diagnosed with Parkinson's who do not meet the criteria for a presumptive service connection may still be eligible for some VA benefits under the non-service-connected status. Typically, there is an income limit.

Veterans who are non-service-connected may be eligible for a VA pension, which is a tax-free monetary benefit payable to low-income wartime veterans. Veterans who are eligible for a pension and are housebound or require the aid and attendance or assistance of another person may be eligible to receive additional monetary amounts.

Now moving on to Agent Orange and other toxin exposures. When the PACT Act was first established, Parkinson's was not considered a service-connected condition. But in 2010, it became what we call a presumptive service-connected condition for veterans who served in the Vietnam era and were exposed to Agent Orange. Recently, they have expanded this to include the Blue Water Navy veterans, and the PACT Act has also added five new locations to the list of presumptive locations, which means if a veteran served on active duty in any of the listed presumptive locations, the VA will automatically assume, or what we call presume, that they have been exposed to Agent Orange. In May 2021, parkinsonism was added to the list of presumptive service-connected conditions associated with Agent Orange.

In January 2017, VA announced Parkinson's as a presumptive service-connected condition for veterans who were stationed at Camp Lejeune for no less than 30 days between August 1, 1953, and December 31, 1987. It's important to note that parkinsonism was not included on the list of presumptive conditions. It's just Parkinson's disease currently, and this is related to the water contamination at Camp Lejeune.

In December 2013, Parkinson's disease and parkinsonism became recognized as secondary conditions to service-connected moderate or severe traumatic brain injury.

Applying for VA service connection, my advice to veterans is always: if you think you may have been exposed to Agent Orange or if you spent any time at Camp Lejeune, you should apply just to see. Let Veterans Benefits determine if you're eligible or not.

Gretchen Glenn 00:18:55
Veterans Health Administration and Veterans Benefits both fall under the same umbrella of the Department of Veterans Affairs, but we function quite separately. Just to give you some background, VHA is the healthcare system, and VBA, or Veterans Benefits, is the financial benefits side that also includes vocational assistance to veterans. This is just a side note: our systems don't really talk to each other. VHA can provide medical support for benefit claims, but determinations of the claims are done by Veterans Benefits only, and we do not have access to each other's systems.

It's strongly encouraged for veterans to work with a VSO to help in the disability claim process, which can often be complex. We have Mr. Welma James Jackson Jr. with us today, who is from VBA, and he'll be speaking more about the role of the veteran service officer.

To just touch on some of the VA benefits, the more common ones that veterans would find beneficial, VA offers a variety of medical and support services for veterans, with several of them being of particular interest to veterans with Parkinson's. Some of these benefits are based on level or percent of disability. Depending on service connection or income, there may be a copay for some of these programs.

I just want to note, too, that each VA medical center offers similar programs to some extent, but how they are run and eligibility criteria may differ from each VA.

Veterans would be eligible for primary care services, which includes a pharmacy benefit.

We have a very robust mental healthcare system where we provide care for veterans. There are rehab services such as PT, OT and speech, and recreational therapy; adult day healthcare programs; many VAs have contracts with adult day programs in the community for veterans who need increased socialization or supervision during the day; and a home health aide program, which can provide assistance with hands-on personal care, such as bathing, dressing and grooming tasks. Most VAs do not have their own home health aide agencies, but we make referrals to agencies within the community.

Gretchen Glenn 00:21:13
There are respite care services, which include in-home and inpatient respite to allow a caregiver a break; a home-based primary care program for veterans who have difficulty leaving their home to come to their primary care appointments; they may be eligible to have a VA primary care team come out to them, which consists of a doctor, nurse, nurse practitioners, rehab specialists, psychologists, social workers, etc.

There is hospice and palliative care for veterans who are nearing end of life; prosthetics equipment, which is another word for durable medical equipment, and this could range from anything from dressing aids to walking aids like wheelchairs, walkers, canes and stair glides, just to name a few; VA nursing homes and contracted community nursing homes for veterans who are no longer able to be cared for at home.

One of the programs you may be hearing a lot more about is our Caregiver Support Program. There are two levels to that program. There's the Program of General Caregiver Support Services. This is their core program that provides peer support mentoring, skills training, coaching, telephone support, online programs and referrals to available resources to caregivers of veterans.

The second part of the program is the Program of Comprehensive Assistance for Family Caregivers, and this offers enhanced clinical support and services for caregivers of eligible veterans who have serious injury or illness and require in-person personal care services, among many other requirements, including service connection status. Eligible caregivers can receive a monthly stipend to be their veteran's paid caregiver.

I just want to go over a little bit about the PADRECCs and the Parkinson's Foundation Centers of Excellence and how we work together.

Veterans who are eligible for movement disorder care at a VA, this is just really important to note, do not need to give up their community neurologist. We often refer to this as co-practice. PADRECCs and the Parkinson's Foundation Centers of Excellence work together to ensure veterans are receiving the best possible care with access to eligible benefits. Veterans who already have a community neurologist can choose to have that neurologist manage his or her Parkinson's disease and come to the VA at least one time a year to receive VA benefits such as the medication benefit, durable medical equipment, in-home support programs and all of those programs that I had mentioned before. To be able to access those programs, you just need to be seen in the VA at least one time a year.

Gretchen Glenn 00:23:57
It's important that the veteran must choose one neurologist to be the director of care. If they choose to have the community neurologist be the director of care, the VA neurologist will send recommendations to the community neurologist to consider, but it's ultimately up to the community neurologist to make the treatment decisions. This is really just so that you don't have two different people making medication changes, which can often cause problems for a veteran with Parkinson's.

A veteran can change the director of care over time if they choose. You can start out with your community neurologist, and if you become really happy and satisfied with the care that you're receiving through the VA PADRECC or consortium center, you can decide at any time if you want to switch to having the VA be your director of care. For example, here in Philadelphia, we co-practice with several patients with our local movement disorder centers at the University of Penn, Jefferson and Cooper, as well as many other local community neurologists. Several PADRECCs also partner with the Centers of Excellence to provide fellowship opportunities, so that's training opportunities. We often collaborate with patient education programs. Several of the PADRECC and consortium attendings have appointments at the university Centers of Excellence, and we do a lot of research collaboration as well.

I know that was all a lot of information. Some of it can be a little confusing. Who can help you with sorting through it all? We have the VA social workers, which is what my main role is. We can assess your needs and make you aware of the availability and eligibility of services and help to advocate for you. I often put myself out there as a resource person for you. If I don't know the answer, I can try to find it for you or at least point you in the right direction. I would really encourage you that if you are receiving care at a VA, to just make a connection with a VA social worker. They're all located within the primary care teams, so you can ask your primary care provider at the VA if they can refer you to a VA social worker.

Gretchen Glenn 00:26:08
Just even initially, if you don't even have any needs, just to meet with them to build that relationship and to get some education on what might be available to help you.

VA veteran service officers, otherwise known as VSOs, can help with applying for or increasing VA disability benefits. They can help with the process, which can be complicated and sometimes overwhelming, and they can monitor your claim and also be an advocate for you. We strongly recommend and advise our veterans to connect with veteran service officers to help in the process. They can also help you with getting connected to VA healthcare initially.

I also encourage you to check out the Parkinson's Foundation frequently asked questions, which the Parkinson's Foundation and the VA developed together. It goes over a lot of what I talked about today in more detail, as well as a way to connect with a VA social worker or a veteran service officer.

These are just some of the materials through the Parkinson's Foundation and the VA partnership that we have developed, which, again, as Crista had mentioned, you can find on the PF website at Parkinson.org/veterans. And now I can open it up for questions.

Crista Ellis 00:27:29
Great. Thanks, Gretchen. I know that one, this is a lot of information for our veterans, for the community even. So we do have several questions, mostly clarifying questions on what these organizations' affiliations and partnerships mean. But to start, one of our viewers is asking, in order to get VA care and to have access to Veterans Administration benefits, do we need to receive care from a primary doctor who's associated with the VA, or can we have a primary doctor outside of the VA network?

Gretchen Glenn 00:28:09
First, you would have to apply for VA healthcare to see if you're eligible. You do have to connect with a primary care provider within the VA system. Again, you can be seen one time a year within the VA. You can continue to have your doctor outside in the community. We understand that you could have had that doctor for, like, 20 years. You don't want to give that person up.

We're okay with that. But just to maintain your benefits within the VA, you should be seen at least one time a year in order to do that. For VA, the financial benefits for service-connected disability, you don't have to be seen in the VA healthcare system if you don't want to. You won't be able to access all of the healthcare benefits that I had mentioned and gone over, but you would be able to receive the compensation financial benefit. You don't have to apply to the healthcare system if you don't want to, but we highly encourage you to do so.

Crista Ellis 00:29:05
Thank you.

Gretchen Glenn 00:29:06
And if you're service-connected, you would automatically be eligible for VA healthcare.

Crista Ellis 00:29:10
Okay, great. Thank you for clarifying that. How does the Veterans Administration work with private medical insurance? Is it one or the other?

Gretchen Glenn 00:29:21
That's complicated. We can't bill Medicare because you're billing the government. There are copays. If you are a non-service-connected veteran, you may have a copay for your doctor visits. It could be, I believe, $20 or $25 for a primary care appointment and $50 for a specialty clinic appointment. If you have insurance other than Medicare, the VA can bill your insurance. Say your private insurance would pay half of the specialty care visit; that way, you would only have to pay a $25 copay for that visit. So it can work. They can work together.

Crista Ellis 00:30:04
Great. Thank you for clarifying that. This next one might be a little bit more general as a response, but can you talk more about what a veteran diagnosed with PD should do to ensure that they're taking advantage of all the benefits offered through VA healthcare?

Gretchen Glenn 00:30:23
If you're not connected with a PADRECC or consortium center yet, that would be a good first step. They are the specialists with movement disorders, to make sure that you're getting the right treatment, and they can also make sure that you're connecting with the other services that might be available. They would be more apt to know if being evaluated by physical, occupational or speech therapy might be in order and connect you in that way. Also, connect with a social worker, a VA social worker at the VA.

They're really your connector for the different resources and services there and can tell you what's available, how you can apply for them, help you apply for them, and just sort of help you navigate through the system.

Crista Ellis 00:31:10
My follow-up question was, what is the role of a VA social worker?

Gretchen Glenn 00:31:15
Right. Like as I mentioned, I always introduce myself as a resource person to the patients that I see. If I don't know the answer, I can at least try to find it for you or connect you to the right person because our system is very large, and it can be very complicated to navigate through. We also do resource coordination within the VA and within the community. So if we don't have the service to provide through the VA, we can help connect you with resources within the community. We do a lot of disease education and support — support for the veterans, support for the family, the care partners, throughout the whole disease journey together.

And we're your advocate.

Crista Ellis 00:31:57
Yes, absolutely. We did get a question specific about support for the caregiver of a spouse with Parkinson's disease, and I saw that you did answer that during your presentation. So thank you for including our care partners out there.

Let's see. What else do we have here? What is the income limit, if I could be so bold to ask, for non-service-connected care?

Gretchen Glenn 00:32:21
I cannot honestly answer that. It changes every year. You could go on the VA eligibility website and you would be able to find it there, and also by contacting your local VA and asking to speak with somebody through eligibility.

Crista Ellis 00:32:38
Yeah. Does it change per state?

Gretchen Glenn 00:32:40
It may, yeah. I mean, I concentrate more in the Philadelphia area, so I haven't really reached out to the VA in other states to see, but it could.

Crista Ellis 00:32:51
Okay, great. So some clarification. We have these words: PADRECC, consortium center, COE, Center of Excellence. One of our viewers is asking, can you clarify if the Center of Excellence network is part of the VA or an affiliate that works with the VA?

Gretchen Glenn 00:33:08
They're not part of the VA. Oftentimes they're in the community, and we're at the VA, but we partner together. So we have a partnership with the Parkinson's Foundation, who oversees the Centers of Excellence as part of the network. But we're separate from each other. The VA is not in the business of trying to take care away from the community. We want to make sure that veterans are getting access to all the care that's available to them.

We're happy to work together with the community neurologists and the Centers of Excellence to just ensure that the veterans are getting the care that they need and they're eligible for.

Crista Ellis 00:33:54
Thank you for bringing light to that, Gretchen. All right, so let's see what else. Can you explain more on caregiver benefits, the second tier where you get paid to be a family member caregiver?

Gretchen Glenn 00:34:08
Right. That's the Program of Comprehensive Assistance for Family Caregivers. There's a stipend that a veteran's care can identify a care partner that might be able to receive a stipend from the VA. There are different categories and two different levels of what that stipend may look like. For specific questions, I would refer you back to caregiver.va.gov, and it gives you the breakdown right on there of what the different programs are and what the criteria is. Basically, you would have to be a 70% service-connected veteran or more and have a certain level of dependencies in your activities of daily living or require constant supervision to be eligible.

Crista Ellis 00:34:54
Thanks, Gretchen. Any final words or gems that you'd like to offer our community before we move into the next portion of our webinar?

Gretchen Glenn 00:35:01
I just encourage our veterans to consider applying for VA healthcare. If you may not need the services now, you might need some of the services later. So it would be worthwhile again, even if it's just come one time a year, so that way you're in the system. And then if you need care later on or need access to some of these resources, you're already in the system and hooked in and know how to get them. It could help your family members and friends and people who care for you later on, too, in your disease journey.

Crista Ellis 00:35:32
Gretchen, thank you for offering an overview of the resources available through the VA for our veterans living with Parkinson's and, of course, our care partners living with them.

Gretchen Glenn 00:35:41
Thanks for having me today.

Crista Ellis 00:35:43
The Parkinson's Foundation also offers resources for veterans with Parkinson's disease and their families, including our website at Parkinson.org/veterans, our toll-free Helpline, staffed by information specialists who can address PD-specific questions, a library of educational resources, webinars, podcasts and books. We also have targeted resources for those who have been newly diagnosed with Parkinson's, including information and our online community, PD Conversations, where you can connect online with others living with PD and their care partners.

And now we welcome a special guest to share her story as a veteran living with Parkinson's.

And now we'll hear from Melissa Joanne Martin, who is an LPN Army veteran sharing her experience. Joanne, if you would, please introduce yourself to our community today.

Joanne Martin 00:36:42
Hi, I'm Joanne Martin. I'm a nurse. I'm a veteran. I'm a mom, I'm a daughter, I'm a grandmother, I'm all the things rolled into one.

Crista Ellis 00:36:56
And where do you live?

Joanne Martin 00:36:58
I live in Kingstree, South Carolina.

Crista Ellis 00:37:00
Beautiful.

Joanne Martin 00:37:02
Seventy miles north of Charleston.

Crista Ellis 00:37:05
Wonderful. Well, thanks for sharing that. Joanne, it's really been a pleasure talking with you these last few days and getting to hear your story multiple times, and I'm so glad that you're able to share your story today with our community. I'm wondering if you would be able to share, years ago when you started noticing some changes in your body, like the sleep issues, before you received your diagnosis of Parkinson's.

Joanne Martin 00:37:35
As I look back over time and try to figure this out, I've noticed that my symptoms were nondescript in the beginning, and they probably started in my late 30s, early 40s.

Things like sleep disturbance, constipation, muscle stiffness and aches. I just didn't feel good at all. I'd go to the doctor, and of course the doctor would say, you know, you're just getting a little bit older, Joanne. You're just getting a little bit older, which nobody wants to hear, but it is true. Then I guess probably in my mid to early to mid 40s, I started having more symptoms that were a little more pronounced.

I started having things like twitches in my thumb on my left hand. I'm left-hand dominant, and it was really obvious to me, not very obvious to anybody else, but to me it was. I started having the constipation started getting worse. I started having extreme fatigue and brain fog and just all kinds of issues to where I just broke out in a rash. I had horrible itching episodes. This went on for months and months and months, and I'd go back to the doctor, and the doctor would say, 'Well, you know, Joanne, you are a little older again, and now you're reaching the age of perimenopause,' which any of these other ladies that may be listening dread to hear them say, but it's a fact of life. I don't know. I just never felt well.

Then I guess I was about 45. I had frozen shoulders. It just came up from nowhere. It was horrible. There was no excuse, no reasons that we could come up with. I'm a seeker of answers. I am a problem solver by nature, part of me being a nurse, I guess. And I just couldn't come up with a reason why my shoulder was hurting, why I was having all these strange things that people my age weren't having the same symptoms.

I just pushed issues and pushed issues and just was my own patient advocate and said, 'Hey, Joanne, you really need to see somebody about this.' I had some thyroid issues that kind of muddied the water a little bit as well, and some of the symptoms got blamed on my thyroid. But long story short, I was persistent and got in to see a neurologist maybe in 2015.

They were quick to write me a prescription for Sinemet. They agreed there was a small tremor in my hand and wrote me a prescription for Sinemet, but it was done on a quick exam of hand coordination, handwriting, memory, and being the nurse that I am, a little stubborn. I really didn't just want to take Sinemet just for a little shake in my hand without a concrete reason why it was being diagnosed or dispensed.

Long story short, it took me another year or so, and I went back. I saw a movement disorder specialist who made the statement, she said, 'I don't think you have Parkinson's.' And I persisted on a DaTscan and just insisted that I get it done, and she reluctantly wrote the order to have the DaTscan done, and sure enough, I had Parkinson's.

She treated me for a little while, and then she left the VA, and then I was introduced to Dr. Ketron and Dr. Hinson, and they have taken very good care of me since.

Crista Ellis 00:41:23
It took years for you to get this answer. How did it feel? How did it feel for you to finally get that answer of, you have Parkinson's disease?

Joanne Martin 00:41:35
Well, I won't say I was happy about the diagnosis. I wasn't shocked, but this comes from years of taking care of Parkinson's patients, and I just knew in my heart that I had Parkinson's. It wasn't one of those things, 'Oh, you're just a nurse. You're trying to diagnose yourself,' so forth and so on. Diligence and persistence is the key. You are your own patient advocate. The best advice I can give to anybody that would be listening is you are your own patient advocate. You know your body better than someone who sees you for 15 minutes maybe three times a year or twice a year. And if you're even younger, maybe not even yearly. If you feel something's wrong, you have to just push, push, push until you get the answers that you need.

Unfortunately, mine were, you've got Parkinson's. But Dr. Hinson and Dr. Ketron have tried to make lemonades with the lemon that we've been given, and they've kept my life going. I'm still able to work and enjoy my grandkids and enjoy life. I mean, it's a little slower pace than it used to be, but I'm okay with that. I'm still going.

Crista Ellis 00:42:44
How would you describe your experience in receiving care at the Ralph H. Johnson VA Medical Center with Dr. Ketron?

Joanne Martin 00:42:54
Really good. Years ago, I had dealt with the VA with my father 25, 30 years ago, and it was not a pleasurable experience. Over the years, it has improved drastically. Especially in the period of time that I've been there, they have such advanced technology, and collaboration, I think, with MUSC of Charleston, and women's care has really taken leaps and bounds.

You just have the best technology, I think, in the world, and you have some of the best doctors in the country, if not in the world. They're taking care of you. So I am 100% pleased with my care at the VA. I wouldn't trade it for anything in the world.

Crista Ellis 00:43:41
Joanne, I wanted to ask, I know in our previous conversation, you mentioned a very important person who encouraged you to apply for VA benefits. Would you speak to that?

Joanne Martin 00:43:53
I would. His name was Gusta Gaines. He was the Veteran Resource Officer in Williamsburg County. I initially had joined the National Guard and was deployed to Saudi Arabia during Desert Storm. When our unit came back in 1991, Gusta was really on top of things, and he encouraged every individual that was in that unit and other units, other veterans, not necessarily in the unit that I was in, to explore the VA benefits because we deserved them.

I mean, basically it was, we qualified, we deserved them, don't let it slip by because we live in such a rural area. He was the news for us. He was the reason we knew what to do. In the larger cities, you have more options, you have resources. In the rural communities, you don't. And Gusta was our way in to everyone being able to access the benefits that we deserved. I guess that's the best way I could put it.

A veteran resource officer, to this day — I mean, there are others that have come and gone. He's no longer there. But every county should have a veterans resource officer. Everyone should investigate what can be done if you are a veteran.

Mood and an attitude are your best friends with Parkinson's. Stay positive, even on the rough days. Stay positive. Make sure you have a good doctor who's got your back and weather the storm.

Crista Ellis 00:45:53
Thank you so much, Joanne, for sharing your story with all of us here today. And now I'd like to introduce our next panelist joining us, Dr. Christina Ketron. She is a doctorally prepared nurse practitioner specializing in mental health. She is a nurse practitioner at the Ralph H. Johnson VA Medical Center in Charleston, South Carolina, where she sees patients both with movement and memory disorders. She is a faculty scholar with the Edmond J. Safra Visiting Nurse Faculty Program through the Parkinson's Foundation. She holds a master's degree in nursing education and is an affiliate instructor at MUSC's College of Nursing in Charleston.

Christina, welcome to our webinar, and thank you for sharing your time and knowledge with us today.

Dr. Christina Ketron 00:46:35
Oh, thank you so much for having me. Do you hear me okay?

Crista Ellis 00:46:39
Yes, you sound great.

Dr. Christina Ketron 00:46:41
Perfect. I decided not to have a PowerPoint behind me today. I just wanted to talk with each of you, even though I can't see you. I wanted to talk to you as if I were sitting with you in my office. One of the things that I think is important that we talk about when it comes to veteran resources is, one, what resources are available to you. You've already had a couple of speakers talk to you about that, and you're going to have more throughout this program and in the next three sessions. But today, I specifically wanted to talk to you about what it looks like when you come into an appointment.

I hear often that patients, you know, they come in and you've been waiting for your appointment for six months, maybe even a year. Maybe it's been three months, but still, you have these things that you want to tell your provider, that these things have been going on. You're not sure about some of the symptoms. Joanne did a really nice job of describing her symptoms and what she was experiencing, and then what she does experience even now after diagnosis. So I want to just give you a little tidbit of some information and how you prepare for an appointment.

And this is whether or not you have come to the VA or whether you're in the civilian sector with a neurologist and you want to start in the VA, or whether you're already a patient. All of these things that I'm going to mention are going to apply to each appointment that you come to. There might be a slight difference in the initial appointment, and so I just want to speak briefly about the initial appointment with either a general neurologist or a movement disorder specialist.

Some of the things that we want to know is when did your symptoms start? Did it start in the right hand or the left hand? What did that look like? Did you experience anything else? Maybe you started falling and that was kind of your first symptom. Maybe it was the thumb and the tremor in your thumb that was the first thing. But we want to know when your symptoms started. Do you have a family history of Parkinson's disease? Does anyone else in your family have any other neurological disorders?

And as you have heard already, did you serve in the Vietnam era or were you exposed to any other toxins that we know have had presumptive conditions attached to them? We will talk about that information. Now, in your appointment, often I have people who come in and they want to go ahead and talk about the service connection attached to that diagnosis. And as providers, we don't have the opportunity to, or we don't even have, the resources available to us.

Dr. Christina Ketron 00:49:42
But you will hear from the veteran service officer today and how you navigate that. Of course, your social worker is also available and how you get service-connected, as you've heard already. If you're a returning patient, what are some things that we want to talk about? I would say, first of all, that what you want to do is come with a list, a list of questions. But the one thing that I want you to think about is: what is the one thing that we could do for you during that appointment? If we can do nothing else and we don't have time to do anything but that one thing, what is that? That's always a nice way to start out our appointment time, and it kind of helps us to focus that appointment on what is really concerning you the most.

Some other things that would be helpful for you to write down, and even keep a journal during the time between your appointments, are some things like: if you're on carbidopa-levodopa, how is that working for you? Does it last the full four hours or three hours, whatever your regimen is set up with your provider? Are there any times where you feel any off symptoms? Off symptoms are, you know, we describe that as feeling like the medication just didn't last the full time and then I started getting my tremor back. Those are things that can be helpful.

Are there other medications that you've had in the past that may present with Parkinson's-type symptoms? We want to know if you've had any of those before. Do you have any falls or balance issues? Are you feeling like your gait is not quite the same as what it used to be? Starting out with that, we talk about motor symptoms. Knowing what your tremor looks like and how it's been. Are you experiencing any kind of stiffness or any kind of trouble, as I said already, with gait or falls? Are you having trouble with constipation? We can discuss dietary issues.

Are there any issues with urination? Because that can be a symptom of Parkinson's disease, or it could be something else going on, and we want to help you with that as well. We can coordinate with our interdisciplinary team. Are you having trouble with speech or swallow issues? Do people ask you to speak up frequently? Do they say that your voice is softer than what it used to be? Are you having any episodes where you get choked on your food? Or are you having any drooling, which can be really embarrassing whenever you have to admit that? But these are things that we want to know because we have resources available to help you with these things.

Dr. Christina Ketron 00:52:24
Then we can break it down into what's called non-motor symptoms. Typically, whenever I write a note, this is often how I will separate it out between motor and non-motor. Non-motor is just as important as the motor symptoms that you experience. Non-motor can be things like your mood. Are you more irritable than what you used to be? Are you experiencing some agitation that's really not part of your personality at baseline?

Are you apathetic? You wish you want to do things, but you just don't want to get out and do the things that you used to do. Maybe you feel sad or hopeless or very anxious, and that's not something that you've ever been before. In the veteran population, we're working with patients that also may have post-traumatic stress disorder. Teasing out those symptoms with symptoms that may come along with Parkinson's disease in itself is something that we need to focus on. It's important to you, and if it's something that is the most important thing to you, we want you to bring it out early on in the appointment.

You want to talk about how you're sleeping. Are you having any kind of active movements, or are you having more vivid dreams or nightmares? Again, in the veteran population, we're trying to figure out: are these things associated with your post-traumatic stress, or is this something called a REM behavior disorder that is common in Parkinson's disease? Are you having any hallucinations? Often, whenever I ask these questions, sometimes I'll get a grin from people, or sometimes they'll look down at the floor and they don't want to make eye contact, or sometimes they'll say, yeah, I am. Often that's a hard thing to admit because it's a struggle to say that you're having hallucinations, but it's nothing to be ashamed of, and we also want to know because we have resources available to help you with that.

Telling us about those things will be really helpful. Are you having any trouble with memory? Often, we find that within Parkinson's, you can have difficulty with word finding, thought blocking where you know what you want to say, but it just doesn't come out very well. Also executive function things like, you know, I used to be able to multitask and now I can't do that very well anymore.

We want to know about those things because memory can be impacted by Parkinson's as well. Another thing I just want to throw in here really quickly that I think we should talk about a little bit more with our patients is: do you have advance directives? This is something that's helpful for us to know, and we can navigate those resources for you. Also, we want to know if you have caregiver strain. We've talked about the Caregiver Support Program, and that is such a strong resource within the veteran population.

We rely very heavily on our social workers, our palliative care providers, and our rehabilitative resource, which is often speech therapy, physical therapy, occupational therapy. In order to address those concerns and resources within the VA and within Parkinson's, I want to turn it to Shawn, who is a staff member with me and an excellent OT who is also LSVT trained with the BIG program, which is very beneficial for our patients.

Shawn Katalinas 00:55:51
Well, thank you.

I'm going to talk about ways that a veteran could access supportive care or rehab therapies through the VA. This has been said earlier, but basically a consult can be placed to occupational therapy, physical therapy, or speech therapy through primary care or neurology. Then that veteran would be evaluated at their nearest rehab clinic. Oftentimes, that could be at a main hospital or that could be at a community-based outpatient clinic.

Some cost-effective ways that a veteran could do home modifications to ensure more safety in their home — a couple things I just want to discuss. Throughout the house, we do want to talk about reducing fall risk. Sometimes that would include removing or securing throw rugs, getting rid of unnecessary obstacles or transitions in the house. Oftentimes, a person with Parkinson's may have difficulty transitioning from one room to another, especially if the flooring is different. We want to try to minimize that if we can.

If a veteran is home alone at times and possibly a fall risk, we would be able to issue a Life Alert if appropriate. That is just a device that would enable a veteran to access emergency services if they needed help and they were alone. In the bedroom, we could issue a bed rail to help get in and out of bed. At night, if necessary, use a urinal or a bedside commode to decrease fall risk at night if needing to get up to use the bathroom.

A couple other things in the bathroom: we would be able to issue grab bars, other durable medical equipment such as a raised toilet seat, shower chair, tub bench, long shower hose, long sponge.

Shawn Katalinas 00:58:18
Additional things that we could do through the VA is what's called a HISA grant. That's a Home Improvement and Structural Alteration grant. If approved, this could include a barrier-free shower modification, which would be taking a tub shower and converting that to a barrier-free shower. The patient would need to be assessed for this and also try durable medical equipment beforehand. But if they are approved, that's something that the VA could help assist with. Also, other modifications could include doorway modifications as well as vertical platform lifts.

Other adaptive equipment that an OT could issue to a veteran with Parkinson's could include different sorts of utensils. Sometimes these are weighted utensils or self-stabilizing utensils. These could help reduce the effect of a hand tremor, which is common in Parkinson's. Additional adaptive equipment for self-feeding would include suction cup bowls, other adaptive bowls or plates. Sometimes these have higher ridges on one side. In addition to that, we could issue plate guards, which is almost like a bumper for a plate that could help just make self-feeding a little more successful.

In addition to that, other ADLs a veteran with Parkinson's might have difficulty with would include self-dressing, and an OT would be well-equipped to evaluate a veteran and see what kind of dressing equipment they may benefit from. That could include a dressing stick, reacher, sock aid, shoehorn, long sponge.

Along with occupational therapy, we do work very closely with physical therapy. Physical therapy helps a patient keep moving for as long as possible, as well as possible. When should someone with Parkinson's see occupational therapy or speech therapy? We always say as soon as possible. The sooner a veteran could get in for therapy, the sooner we could identify: is this patient a fall risk? What kind of equipment might they need? Or what kind of therapy can we provide to help them be independent as long as possible?

A lot of times this could include issuing a walking aid such as a rolling walker, rollator, U-Step. A U-Step is a specific device designed for people with Parkinson's that actually helps a patient ambulate safer by kind of preventing a forward motion that is very typical with Parkinson's, and that could help prevent a fall from that forward momentum.

In addition to that, we offer physical therapy here in our main hospital as well as community-based clinics. If a veteran is not near to those, we could offer physical or occupational therapy throughout the community as well.

Shawn Katalinas 01:01:42
To touch on specific therapies available for people with Parkinson's, a popular therapy is LSVT BIG. This is the amplitude-based movement therapy. This is designed to help people improve the quality and size of their movements. This is often structured four times a week for four weeks, and it is run by a PT or an OT. We offer this at our main hospital here in Charleston, but also throughout the community if a veteran would qualify.

Oftentimes, a high percentage of people with Parkinson's experience speech and voice disorders. For this, a referral to speech therapy is often made. A speech therapist could evaluate for speech and voice disorders and instruct a patient in exercises for strengthening their voice quality. A speech-language pathologist can also assess swallowing ability and make recommendations for diets and also recommendations for safer eating to reduce aspiration risk.

A speech therapist could also provide LSVT LOUD, which is similar to LSVT BIG, but rather focuses on the quality and amplitude of a patient's voice. This is also offered here in Charleston and throughout the community through Community Care.

I'm happy to answer any questions related to our rehab services here.

Crista Ellis 01:03:19
Sweet. Thanks, Shawn, and welcome back, Dr. Ketron. We have tons of questions and we're already behind on our timeline, but I'm going to try. I'm just going to fire them off at you guys, so if you would indulge me. Tons of questions from our community today.

Dr. Ketron, what would you suggest to someone who lives alone in a rural area without any support or Parkinson's resources? Do I need to move?

Dr. Christina Ketron 01:03:46
Right. No, you don't need to move. But I do think it will be helpful for you to, when you come to your appointment, tell your provider. Because in that situation, we can reach out to the social worker, who then knows so many different resources in the area where you may live. It may be that we have to go outside of the VA and into the community to see if there are other organizations that can check on you if we don't have something that's available close by. But no, you don't have to move.

Crista Ellis 01:04:18
Thank you. Shawn, you mentioned a few adaptive equipment. Does the VA offer any financial support for these items?

Shawn Katalinas 01:04:28
Yeah, for sure. If a veteran was evaluated by OT, PT, or speech, and there was DME or adaptive equipment identified that would be appropriate or helpful for that veteran, we would get those items for them.

Crista Ellis 01:04:45
Great, thank you. Dr. Ketron, what strategies do you recommend for veterans to effectively navigate the VA healthcare system?

Dr. Christina Ketron 01:04:55
I do think that it kind of goes back to my brief talk about preparing for your appointment. If that is the one thing that is most important to you, to help to navigate the resources, then we want to know about that. Because whenever you feel like you can navigate all the different things that we've talked about even today, which is a long list of what Gretchen provided, we have resources that we can kind of farm out and bring all of it together. It's not something that you have to stress or worry about, although I do understand that it can be very overwhelming. But it's something that you want to talk to your provider about.

Our social workers in the VA system are amazing, and they do a really great job. So you're not alone in feeling overwhelmed.

Crista Ellis 01:05:44
We've been getting a lot of questions about advocacy. Would you highlight the social worker as kind of the charge individual in the VA system to be the advocate for veterans?

Dr. Christina Ketron 01:05:56
Yeah, I'm happy to do that. I think first I want to go back to what Ms. Joanne Martin said, that the patient has to be the advocate for themselves to begin with. I think sometimes the role of that sometimes goes to the caregiver. They're the ones that come in and say, you know, this is what's going on. So we rely on our patients and their family members and friends to tell us what's going on. The social workers just have resources that we often don't have time to talk about within our 30-minute or 60-minute appointment. They are someone where we can put in a consult for them if it's more than just a random question.

We can put a consult in and we can lay out what it is that the patient has questions about. Then that individual, a social worker that's attached usually to the primary care, will contact that veteran or spouse, family member, and help them to navigate the resources.

Crista Ellis 01:06:56
Thanks for highlighting that, Dr. Ketron.

Shawn, a question that has been a pattern that's been asked by several of our audience: when is it recommended for individuals with Parkinson's disease to see an occupational or physical or speech therapist? Part one. And part two, how can they access BIG therapy and Rock Steady Boxing through the VA?

Shawn Katalinas 01:07:21
Great question. I would say again, as soon as possible. As soon as you have a diagnosis, or even honestly, if you don't have a diagnosis and you're having difficulties with any of your self-care or mobility, ambulation would be a great time to seek out a referral to occupational therapy or physical therapy. But if you are newly diagnosed with Parkinson's, I would say mention to your primary care or neurology that you would like to be seen by rehab services because there's almost always something we could offer.

Crista Ellis 01:07:54
Yeah, sort of setting a baseline. This is when we just got diagnosed with Parkinson's. This is where I am at today, and we can watch that progression through the years.

Dr. Christina Ketron 01:08:06
I will say, too, Shawn, I'm going to give you a little props here. Shawn has actually probably caught a couple of different people with Parkinson's disease that he was working with individually and messaged me and said, hey, I think this person might have Parkinson's. Can we get them in?

Shawn Katalinas 01:08:24
We work very closely together, so it's nice that we have that kind of relationship. As far as you asked about LSVT and Rock Steady, definitely, we have those services here, and we're also working to expand those services, especially for LSVT BIG. If we don't have the services by that veteran's home, we could refer them to community care and have them get LSVT BIG in the community. For Rock Steady, we're working on expanding offerings through the VA, and then we could refer them to the community as well.

They're two great programs.

Crista Ellis 01:09:05
Yeah, they really are. Accessible through the VA, so that's wonderful, Shawn. Thank you for highlighting that. Ending this session on a note of what we can do. What can we do for our Parkinson's disease or our loved one affected by it, even for ourselves? Can you please share what would be an ideal kind of exercise routine for a person with Parkinson's?

Shawn Katalinas 01:09:30
Definitely. Exercise is the one thing that we could really promote as helping everyone that does have Parkinson's. It could help slow down progression. So we encourage, even if it's just as simple as going out for a walk in the neighborhood safely, and if you're using a rollator, I'd recommend taking that, but just getting up, moving around.

Again, I'll go back to LSVT BIG. We will show you a series of exercises. They're simple, you don't need any equipment, and those are things that we would recommend you to continue to do lifelong. Just getting up, moving around. If there's something you're interested in that you're participating in outside, I would recommend getting up and getting out as often as you can because laying down in bed, on the couch all day, that's not helping us out. We got to get up and moving around as best as we can.

Crista Ellis 01:10:27
Thanks, Shawn. Dr. Ketron, any final words or gems or pearls that you'd like to offer our community before we move on?

Dr. Christina Ketron 01:10:35
Yeah, I think it's true about the exercise. I was just having this conversation yesterday with a veteran who exercises five to six times a week. But what we spent the majority of our time doing is talking about how to time his medication based upon when he's going to go work out, so he can get the most effective workout that he can with the highest level of medication in his system, but also not get hurt in the process. Definitely would encourage that, and if we all could have a prescription pad for that, I think we would give it out every day.

Crista Ellis 01:11:14
Thank you so much, Dr. Ketron and Shawn. Appreciate you both.

Dr. Christina Ketron 01:11:19
Thank you.

Shawn Katalinas 01:11:19
Thank you.

Crista Ellis 01:11:21
The Parkinson's Foundation not only offers information and resources about these therapies and the benefits to people with PD, but we also provide professional education and training programs for allied healthcare professionals through our online courses, Physical Therapy Faculty Program, team trainings, and more, which Dr. Ketron and Shawn have both been engaged in. Our goals are to educate the people living with PD and to ensure healthcare professionals across the country are up to date on the latest Parkinson's information and best practices when it comes to treatment and care.

In closing, I just want to make sure that I give a shout-out to each panelist who was present today: Gretchen Glenn, Ms. Joanne Martin, Dr. Christina Ketron, Mr. Shawn Katalinas, and Mr. Welma Jackson. Thanks to all of you who joined us today. A follow-up email will be sent with a survey. Please tell us what you thought about today's program. You'll also receive a link to today's presentation and additional resources.

Join us for part two of our veterans webinar series, Veterans and Parkinson's: Managing Anxiety, Depression, and Apathy, on August 31. For veterans living with Parkinson's disease, non-motor challenges are not always easy to discuss. With a focus on mood changes including anxiety, depression, and apathy, this program will provide strategies for coping and talking about it with healthcare providers or your loved ones. For more information and to register, find the program on our webpage at Parkinson.org/veterans.

If you had a question today that was not answered, please reach out to our Helpline by calling 1-800-4PD-INFO or emailing Helpline@Parkinson.org. You can use that same contact info to order our free resources, educational book series, and our Hospital Safety Kit. We thank you for joining us today and hope to see you again soon. Bye-bye for now.

Gretchen Glenn, LCSW
Corporal Michael J. Crescenz VA Medical Center
Philadelphia Parkinson's Disease Research, Education and Clinical Center
Social Worker / Associate Director of Education

Christina Ketron, DNP, APRN, PMHNP-BC
Neurology Services, Nurse Practitioner
Ralph H Johnson VA Medical Center

Mr. Welma James Jackson Jr, MA
Capitol Area Regional Manager
Accreditations, OJT and Department Service Officer (VFW)
Louisiana Department of Veterans Affairs

Shawn Katalinas, MSOT, OTR/L
Occupational Therapist
OT Clinical Care Coordinator for Education (CCCE)
Ralph H. Johnson VA Medical Center

Crista Ellis 00:00:01
Hello and welcome to the Parkinson's Foundation's webinar, Veterans and Parkinson's: Managing Anxiety, Depression, and Apathy. I'm Crista Ellis, your host for today's webinar. Helping me behind the scenes are my colleagues Jenny Fearday, Danielle Agpalo, Laura Cameron, and Michelle Shepherd. We are recording today's presentation. You'll receive a follow-up email from us with a link to today's recording and other resources in the coming days.

The mission of the Parkinson's Foundation is to make lives better for people living with Parkinson's. Whether you are living with Parkinson's, caring for someone with Parkinson's, or working to end the disease, we are 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 provides weekly education and wellness programs virtually through our PD Health at Home series, which includes Mindfulness Mondays, Wellness Wednesdays, Fitness Fridays, our Expert Briefing series, and Episalud en Casa. You can learn more and register for these programs by visiting 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, the Foundation is proud to have established a formal partnership with the Veterans Administration. This partnership has the overarching goal to improve the quality of life for veterans living with Parkinson's disease and their care partners through greater access to education, resources, and support.

Please 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.

This year's webinar series for veterans is presented with support from the Don and Lorraine Freberg Foundation. We want to take this moment to thank the Freberg Foundation for helping to make these programs possible.

Today's discussion will focus on the managing of non-movement symptoms related to Parkinson's disease, such as anxiety, depression, and apathy. Our webinars for veterans will continue on October 26, which will offer tips and means of support to help us prepare for the future. To conclude this year's webinars for veterans, we will host our final event on December 14, where we will discuss how, for some veterans, environmental exposure and toxins can increase the risk of PD. You can learn more about these events and register to attend at Parkinson.org/Veterans.

We understand the vastness of navigating Parkinson's disease as a veteran, which is why we have designed this educational opportunity as a series. Today we will focus highly on managing anxiety, depression, and apathy. If you have a question outside of today's topic, please plan to attend one of our future events, watch an archived event, or contact our Helpline at 1-800-4PD-INFO to connect you with the resources you're asking for.

As we begin the formal webinar, please know that we are recording today's presentation. You will get a follow-up email from us with a link to today's recording and other resources.

I'd like to take this moment before we step into announcing our speaker. We have two watch parties in the area, one in the Syracuse area and also in Cherry Hill, New Jersey. I want to give a shout-out to the Katz JCC and the Ciceron Legion. Thank you for joining us today and uniting your community to join this live broadcast for our veterans.

Joining us today is Dr. Megan Gomez. Dr. Megan Gomez is a staff psychologist at the Tibor Rubin VA Medical Center in Long Beach, California. She provides psychological assessment and treatment interventions to veterans enrolled in the home-based primary care program and also provides psychology support to their family caregivers. She works primarily with veterans over the age of 65 who have chronic and complex medical and psychological conditions.

Dr. Gomez completed her first—oops, sorry, I lost my bio. Dr. Gomez, thank you so much for joining us today. Really appreciate you over there on the West Coast connecting with our veterans living with Parkinson's. Thank you so much.

Dr. Megan Gomez 00:05:00
Thank you so much. It's a pleasure to be here with all of you today. Thank you for making time to tune in to our talk. This is a topic that I know a lot of us are interested in, so let's go ahead and get started.

First, disclaimers. I am a clinical psychologist, meaning I have my PhD in clinical psychology, and I'm a licensed psychologist. I'm not a medical doctor, nor do I have prescription privileges. I have no financial disclosures to report, and this presentation is based on my professional opinions, which are based on research and my clinical practice.

A little bit about me. First, my grandfather had Parkinson's disease, and he and I were very close. He was diagnosed with Parkinson's when I was in high school, and I moved in with him and my grandmother as his Parkinson's progressed. I lived with him for the last seven years of his life, being a caregiver alongside my grandma to him. Parkinson's is a near and dear condition.

In terms of my professional situation, I got my bachelor's degree at USC here in Southern California, and then I went on to get my master's degrees in psychology and theology from Fuller Seminary, where I also got my doctorate. In terms of my work, I worked in several institutions here in the Southern California area. I did my postdoctoral training at Keck Medicine of USC in the neurology department, working with people with Parkinson's.

I've also trained at Cedars-Sinai, Rancho Los Amigos, which is a national rehabilitation center, UCLA, and I am currently at the VA in Long Beach, as was mentioned. Here is an outline for my talk for today.

I want to start by talking about the non-motor symptoms of Parkinson's disease and then describe what depression, anxiety, and apathy are, followed by the causes of these disorders, the impact on quality of life for the person with Parkinson's and also the family, and then finally discuss the treatment of depression, anxiety, and apathy. I'm going to breeze through these first two topics so that we can spend the bulk of our time together talking about the causes, impact, and treatment.

Non-motor symptoms of Parkinson's. We all know what Parkinson's disease looks like. We know those classic symptoms that are visible.

When I talk about Parkinson's, I'm talking about the whole spectrum. We know that Parkinson's disease is one of those that falls under that umbrella. There's also essential tremor, restless leg syndrome, dystonia, Lewy body disease or Lewy body dementia, PSP, MSA, and CBD.

We talked about those motor symptoms, what Parkinson's looks like, and of course, we know that there is a slew of non-motor symptoms involved in Parkinson's disease. These are the invisible symptoms that can be equally or more so distressing than some of those motor symptoms.

Dr. Megan Gomez 00:08:52
As a psychologist, I work with people to address those invisible symptoms, namely the cognitive aspects of Parkinson's, the mood symptoms of Parkinson's, anxiety, apathy, and the behavioral components. Of course, when we're talking about any of these, there's oftentimes so much overlap, and it can be really difficult to talk about one specific symptom when we know that there are oftentimes symptoms that go hand in hand or clusters of symptoms.

This is a non-exhaustive list of some of the non-motor symptoms that we see in Parkinson's disease. Of course, there are a lot of them. Some of the more common ones can be the sleep disturbances, sexual dysfunction, urinary dysfunction, pain, fatigue, and cognitive disorders. Today, obviously, we're going to focus on the anxiety and depression.

Let's start talking about how we define or diagnose these symptoms. The DSM is the book that has all of the mental health diagnoses. This is the book that we use to diagnose someone with any of these conditions. Taking a look at depression, you can see that there are quite a few depressive disorders. I'm not going to spend too much time talking about each one.

I think it's most important to talk about what these depressive disorders have in common, which is the sadness, emptiness, or irritable mood, reduced interest or pleasure in activities, and also somatic and cognitive changes that significantly affect the individual's capacity to function.

The differences between these depressive disorders are the duration, so how long the person has been experiencing the depressive symptoms, and also the timing. When did the depressive symptoms start, what was going on at that time, and also the cause? These differences help us differentiate which type of depressive disorder someone has.

In the general population, upwards of 33% of people will experience an episode of major depression at some point in their lives. The numbers vary in terms of people with Parkinson's reporting depressive symptoms. On the higher end, it can be more than half of people with Parkinson's will experience a depressive disorder.

There is, of course, a difference between being in a bad mood, which can last a couple hours, to having a bad day, to then meeting diagnostic criteria for a depressive disorder. Just because you have a bad day or a bad couple of days doesn't mean that you meet criteria for a depressive disorder. Usually, that would require you to have feeling depressed or down with those other symptoms that I mentioned for most of the day for at least two weeks.

There is a lot of overlap in depressive symptoms and Parkinson's disease symptoms, so it can be difficult to tease apart what is Parkinson's and what is depression. Some of those overlapping symptoms include difficulty concentrating, weight loss, fatigue, early morning waking, so maybe popping up wide awake at 2 or 3 a.m., and physical restlessness or slowness. These symptoms can occur in Parkinson's alone, in depression alone, or in both.

Dr. Megan Gomez 00:13:11
Let's talk about anxiety. There are even more anxiety disorders, and I want to also mention obsessive-compulsive disorder and trauma-related disorders, which are very tied to anxiety disorders. Again, some of the common features that we see in anxiety disorders would be excessive fear, and we can have those physical changes, right? That increase in heart rate, breathing, changes in our digestion, and anxiety disorders also have a thought component of feeling that there is immediate danger and withdrawing.

These disorders also have anticipation of future threat, which can cause muscle tension, vigilance, which is being acutely aware of your environment, and also avoidance behaviors. You may not be doing things such as watching certain movies, going to certain places, being around specific animals, or being around crowds. They also cause distress or impairment in functioning.

Differences in the anxiety disorders include types of objects or situations that induce fear or avoidance behavior and the associated thoughts.

In the general population, approximately 30% of people will have an anxiety disorder, and when we're talking about people with Parkinson's, that number can be as high as 55%. Again, just like with depression, just because you're nervous before maybe taking a flight, nervous before a doctor's appointment, or nervous before a date, and of course we all have stress, that doesn't necessarily mean that you meet criteria for an anxiety disorder. That would, of course, again entail the severity of those anxiety symptoms and the duration as well.

Depression and anxiety both have these four components to them. There are feelings or emotions that accompany these diagnoses. There are also thoughts, physical sensations, so things that are occurring physiologically in our body, and behavioral aspects that are changed as a result of anxiety and depression.

Apathy is actually not a diagnosis in the DSM, but it is something that people with Parkinson's can experience as a part of the depression or as a result of the reduced dopamine in our body. Apathy is defined as diminished motivation and reduced goal-directed behavior, decreased emotional responsiveness, and a lack of spontaneity, interest, or emotional expression.

Oftentimes, medical providers are hearing from family members that the person with Parkinson's has apathy. It may not be as common for the person with Parkinson's to report apathy, but it can be very concerning to the family. I have this picture here of this person sitting in the chair, and I hear often from wives that their husband with Parkinson's is content sitting and watching TV all day. They can get frustrated that the person with Parkinson's isn't having that pep in their step, isn't being that go-getter, doesn't have a list of goals that they want to do, and isn't being as productive as they once were.

Dr. Megan Gomez 00:17:21
The difference between apathy and depression is that whereas apathy is considered a disorder characterized by a reduction in self-initiated, goal-directed activities, depression has those elements of sadness or the loss of interest or pleasure in activities. I'm going to be talking and giving a lot more examples of these as we go on.

I provide clinical services at the VA, so I work with veterans one-on-one to help them address anxiety and depression when they have Parkinson's. I also work with family caregivers. Some of the common fears that I hear are that fear that something awful may happen, fear of losing control, fear of being a burden, and fear of being abandoned. Of course, with Parkinson's, it makes sense why people would have some of these fears.

Common feelings that veterans explain are feeling unhappy, having a loss of hope, loss of courage, or a lack of confidence, feeling annoyed, feeling irritable, or feeling guilty.

I often hear that the person with Parkinson's doesn't necessarily get that boost in mood when something good happens. Sometimes there's a belief that life is meaningless or they have extreme skepticism. One of the common examples I hear is that your doctor tells you to exercise, your family tells you to exercise, but sometimes the person with Parkinson's says, "What's the point of exercising? I have a neurodegenerative condition that's only going to worsen. Exercise isn't going to help me."

An unwillingness to speak or smile. Sometimes the veteran with Parkinson's can seem kind of despondent. Maybe they don't laugh at jokes. Maybe they don't present visually as approachable or someone who's in a good mood. Of course, sometimes that can be a result of the masked face, but sometimes it can be, again, a result of that lack of dopamine, which we're going to talk about.

Again, that loss of pleasure in activities. Maybe the person used to love to go watch their grandchildren in their sporting events. Maybe they used to really look forward to going to their games, and now they haven't been to a game in months. It just doesn't seem like something they're motivated to do.

Let's talk about the causes of depression, anxiety, and apathy for people who have Parkinson's.

On that list of depressive disorders that I gave earlier, one of the types of depressive disorders is due to another medical condition. That DSM that I showed you has specific mention of a depressive disorder due to Parkinson's disease. The reason for that is there is an abundance of research that shows Parkinson's disease has an impact on the brain, which causes symptoms of depression.

Dr. Megan Gomez 00:20:56
We know that because people with Parkinson's oftentimes will say that they experienced depression six years before they even received the diagnosis of Parkinson's. I think there sometimes is a misconception that people are depressed because they have Parkinson's, and it's a reaction to the diagnosis. But because those symptoms can be present before the diagnosis of Parkinson's, we know that that can be a result of the brain changes and the neurochemical changes that are occurring in the person who goes on to have that diagnosis of Parkinson's.

Depression is related to the direct physiological effects of Parkinson's disease rather than a reaction to the diagnosis.

We know that the prevalence of depressive symptoms is higher in people with Parkinson's than it is in other chronic and disabling disorders. When we look at conditions like multiple sclerosis, ALS, and Alzheimer's disease, people with Parkinson's have higher rates of depression. We know that, again, it's not just a reaction to the diagnosis, but it's in fact the brain chemical changes that are occurring.

Depression may result from the underlying disease process rather than solely a reaction to the motor disabilities.

Even though depression is very common in people with Parkinson's, only about 26% receive treatment for depression. We can talk and hypothesize about why that might be.

This slide illustrates the fluctuations associated with dopamine levels. A lot of us have heard about the on and off state in Parkinson's disease, where the peak is when our dopamine, our medication, is working at its best. The dopamine level is higher, and then we see that dip in dopamine.

It's important to remember that when a person is diagnosed with dementia, they have lost 80% of the dopamine in their brain. We know that the carbidopa-levodopa medication that we take increases the level of dopamine, but we only have that window of time where the medication is effective. That varies person to person based on a variety of different factors, some of which are how long the person has been on the dopamine or the Parkinson's medication and how responsive the person is to the medication. These fluctuations in dopamine are very important to keep in mind.

Dr. Megan Gomez 00:24:07
I also want to say that for a person who does not have Parkinson's disease, they have a reserve of dopamine in their body, right? Their brain is producing dopamine, and there are things that they do behaviorally that cause spikes in dopamine. Oftentimes, dopamine is thought of as the reward chemical in the brain.

I want to explain to people that yes, it's linked to reward, but there's also a spike in dopamine when a person without Parkinson's has a craving. For example, if I have a craving for water, I notice, wow, I'm really thirsty, and I get a spike in dopamine with the craving. We get a spike in dopamine when we want something. Then I immediately get a decrease in dopamine where I fall below regular levels, and my body and my brain do that intentionally.

I want something, I get this spike, and then I have a deficit in dopamine. The reason that happens is so that I feel pain. I feel the pain of wanting water and not having it, and that dip in dopamine is what propels me to go get a glass of water. That happens anytime we have a craving. Say I'm craving a cup of coffee. I feel that spike in dopamine when I feel the craving, and then I dip and I say, I really want a cup of coffee now. I have options.

I can go to the coffee machine and make a cup of coffee. I can get in the car and go to Starbucks and get a cup of coffee. Then my dopamine level rises again when I experience that consumption of the coffee, or the consumption of the water, or it can be anything. But I think it's really important to recognize that that spike in dopamine first happens when we want something. Then we get that trough of dopamine, which makes us move, motivates us to get what we want, and then we get the spike when we experience it.

For someone with Parkinson's disease, where they have a depletion of dopamine, it makes sense why they would have apathy. They're not getting that natural spike when they want something. In turn, it may feel like they don't care what they have for dinner. They don't go for that glass of water on their own. You sometimes have to tell them, cue them, remind them to get the glass of water.

Sometimes they don't have the desire to go out and get sunshine. They don't have that desire to exercise. If we think about the person with Parkinson's having that depletion of dopamine and not having that natural craving for something, it makes sense why they're more content or can be content sitting in a chair watching TV. Whereas someone without Parkinson's is constantly having these natural peaks and troughs in dopamine, which make you do things.

Dr. Megan Gomez 00:27:45
I'm going to talk about neurotransmitters a bit. We know that Parkinson's disease mostly affects dopamine, but it also affects the other neurotransmitters, such as serotonin, which is linked to mood and depression, and GABA, which is linked to feeling calm or feeling anxious. Again, a lot of times in talks, we try to oversimplify things to get our point across.

Neurotransmitters oftentimes work hand in hand, and it's hard to isolate just one. But I'm going to try, for the sake of the talk, to mostly talk about dopamine. Keep in mind that a person with Parkinson's can have disruptions in many of these neurotransmitters.

This illustration demonstrates where dopamine goes in the brain. There are different pathways in the brain that transport dopamine. The one on the top, the motor somatosensory, is responsible for movement. It is responsible for initiating movement and stopping movement, which are correlated with the motor symptoms of Parkinson's. Then there's that prefrontal pathway, the frontal-striatal circuit.

This is responsible for a lot of different things. Dopamine helps us regulate our body temperature. Dopamine helps us regulate our sex drive. Dopamine helps us regulate our impulses, so it can help us pump the brakes on some of those impulses that we have. We know that impulse control disorders are very common in people with Parkinson's.

That frontal pathway is also responsible for helping us think of context. There's always a time and a place for things, right? What we do in the bathroom by ourselves, we would never do if we were on stage giving a lecture.

Context is very important for helping us determine appropriate behaviors, when to do certain things, and when to not do certain things. In Parkinson's, that can be disrupted because that part of our brain is not getting the dopamine that it needs.

People who suffer with low levels of dopamine often experience hopelessness, worthlessness, and struggle to handle stress. These individuals will often isolate themselves from others and have self-destructive thoughts and behaviors. Again, this is for anyone who has that dopamine deficiency. There are certain medications known as dopamine blockers that, if I were to take, I would feel very down, very depressed, very pessimistic. Why bother? What's the point? This would happen for anyone who has that deficiency or depletion of dopamine.

Dr. Megan Gomez 00:31:23
The opposite would be someone who is on cocaine, for example. My stereotype of someone who's on cocaine, which acts upon dopamine, is that when we take cocaine, we get that flood of dopamine in our body. My stereotype of someone who's on cocaine is that they have a lot of energy and feel like they can take on the world.

They're very productive. They don't need a lot of sleep. They can have a lot of things on their to-do list and check them all off. That's someone with a lot of dopamine. The opposite would be someone without a lot of dopamine, which would be the inverse response.

Addiction and the brain, factors that influence addiction. We see a lot of addiction in people with Parkinson's. The reason being that reinforcement of certain activities. Sometimes people can get addicted to shopping when they have Parkinson's because they get that spike in dopamine.

A lot of times, people with Parkinson's won't get the spike in dopamine from little things, like a nice meal or a nice walk. Sometimes it takes something a lot bigger for them to feel that rise in dopamine. It may be going on a huge shopping spree, buying something like a new car, having sex, or doing something that would give that huge spike in dopamine because sometimes, when they're depleted, they need that huge spike.

We talked about motivation and dopamine and how dopamine can be huge in providing us with that drive and focus needed to get things done. Dopamine is also involved in the pleasure system, as I mentioned, and giving us that sense of continuing to do something even when it's hard.

Dopamine is released by behaviors. It's also a result of chemicals. Coffee releases dopamine. Cocaine, of course, does. Our Parkinson's medications do. Foods high in tyrosine do. Tyrosine is basically that L-dopa, so any type of food that's high in tyrosine would give us that dopamine effect. There are different ways of getting dopamine. But again, I want to hone in on that spike that happens when we crave something, and then we feel that deficit, the pain, which motivates us to move. Then we experience the high when we get to engage or indulge in whatever it was that we were craving.

Dr. Megan Gomez 00:34:27
We know that people with Parkinson's are basically getting those, not artificial hits of dopamine, but they're caused by the medication. They're not caused by behavior, right? It's almost like an artificial inflation of the dopamine at times because we're taking our medication. Most of us are taking the medication maybe every three hours, every five hours, and we're getting that rise in dopamine because we're taking the medication. The medication wears off, we take the medication, and it wears off.

It's very different for someone taking the carbidopa-levodopa or the Parkinson's medications when they're getting their spikes and it's not matching with their behaviors.

Dopamine again causes the pleasure and the pain, right? We get the pleasure when we think of something we want, we feel the pain of not having it. It propels us to take action. People with Parkinson's don't have that same rhythm of the dopamine. A lot of us understand that after a big experience where we have that surge in dopamine, like our granddaughter or grandson is born, we can naturally have a depletion of dopamine afterwards. That's the way our body is designed.

We get so much pleasure and excitement leading up to a wedding, and then sometimes people will feel that post-wedding blues, or the excitement of planning and going on vacation, and then when the vacation is over, we feel down. Or again, the shopping. I want to also emphasize that the planning gives us that rush of dopamine in people who don't have Parkinson's. When you do have Parkinson's, you don't get that excitement or anticipation when you're planning something.

When we think about just biology and nature, and this is an example of a tiger where they see their prey, right? They get that increase in dopamine, and then they feel like, I don't have the prey, which motivates them to go get it. They're looking at their environment to see, am I on the right track? A lot of times we look to our environment to tell us, you're on the right path, which keeps us going. Then we get the reward, right? In the tiger's example, it's they catch their prey.

It's really important to think about how this is disrupted in people with Parkinson's. It's disrupted because they don't have that craving, so therefore it's difficult to feel motivated to do an activity.

They oftentimes don't get the spike when they get the reward. Oftentimes, they get the reward, and they don't get that dopamine rush unless they just took their medication. It's like, why did I bother? For example, if we go outside and sit in the sunshine, sometimes we'll do it because we know it's good for us and we'll feel better afterwards. But sometimes the person with Parkinson's will go outside and they don't feel better afterwards because they don't get that dopamine spike. It can affect our desire for things.

It can also affect how we feel once we get something good, the reward that we want.

Dr. Megan Gomez 00:38:23
Dopamine and addiction. A lot of times people with Parkinson's have trouble with delayed gratification, right? They want it now because their brain is so deficient in dopamine. They want the things that will give them those quick dopamine hits, like sex, video games, pornography, substances, computer use, and social media. Those things give us those quick hits that we want, rather than putting in a lot of work and effort into something like exercising or doing something like planning a date night.

Those things oftentimes don't give us that quick hit, right? Sometimes with Parkinson's, like an addiction, we have that progressive narrowing of things that bring us pleasure. Sometimes we used to have a lot of interests, a lot of hobbies, a lot of things that would make us happy and bring us joy, and now it may feel like maybe one or two things make us feel good.

Again, just talking about what it is that makes us want to do something again. Oftentimes, it's knowing that we'll feel better after we do it. But sometimes that experience is stripped for people with Parkinson's. They go to physical therapy, they go to the gym, and they don't feel better after. So why would you do it? It makes a lot of sense.

Let's go ahead and take a break here, and then we'll talk about impact on quality of life and some of the treatments available. Okay.

Crista Ellis 00:40:07
Thank you, Dr. Gomez. This is a comprehensive overview of what we can potentially anticipate in the future of our progression of Parkinson's or perhaps what we're already dealing with. Thank you for offering that to us today.

Dr. Megan Gomez 00:40:20
Of course.

Crista Ellis 00:40:22
We did get quite a few questions from some of our attendees and lots of interest in the fluctuations. How are fluctuations associated, you know, fluctuations in symptoms, different for a veteran who has DBS, deep brain stimulation? Is that something that you can speak to?

Dr. Megan Gomez 00:40:44
Yeah. Again, I'm not a movement disorder specialist, but my understanding is that deep brain stimulation helps minimize some of those fluctuations. Rather than having those big peaks and valleys, the DBS can help it seem not as intense, those highs and lows. Of course, people don't have to take as much Parkinson's medication. I think the goal or the hope is that DBS can reduce the magnitude of some of those fluctuations.

Crista Ellis 00:41:20
Thank you, Paul and Alice, for that question. I hope you got the answer you were seeking. Charlotte is asking us, is it useful to do a test of dopamine levels every now and then just to assess non-motor symptoms, having that level of dopamine baseline understanding and how it's changing?

Dr. Megan Gomez 00:41:40
Yeah, good question. I know the DaTscan can help us see how much dopamine is in your brain, and oftentimes that's used as a diagnostic tool to help inform the Parkinson's disease diagnosis. I don't know if people regularly can check that or if that would be covered by insurance, but it would be very interesting to see. There is a lot of research that looks and sees what types of behaviors give us the biggest hits of dopamine. Something like drinking coffee will double your dopamine levels.

Something like having sex will increase your dopamine levels by a thousand percent. I know there's research, but in terms of looking at your own specific levels, I don't know if that's available. But I think the question kind of speaks to wondering, where are we with our dopamine levels at baseline and then also when we're taking the medication?

Crista Ellis 00:42:45
Yeah. A good question to perhaps talk to their doctor about.

Dr. Megan Gomez 00:42:50
Yes.

Crista Ellis 00:42:52
Martha is wondering, what kinds of foods can I incorporate into my diet to help stimulate dopamine production?

Dr. Megan Gomez 00:43:01
Yeah, that's a great question. I know it's as simple as Googling what foods have tyrosine in them. I know there's a lot of beans that have tyrosine in them, but I don't know exactly. I know there are certain foods that you should eat to help you, and then there are other foods that you should avoid that can interfere with your Parkinson's medication. That's a great question. I think that's worth researching.

Crista Ellis 00:43:29
Thanks, Dr. Gomez. If one of our staff members who are joining us could respond to Martha with some of the nutrition webpages and resources that we have and share that with Martha. Thanks, Martha, for bringing that to our attention.

Could you speak on what signs veterans can look for for anxiety and depression and what kind of strategies have been effective in managing these types of symptoms for veterans?

Dr. Megan Gomez 00:44:03
Yeah, we're going to get into the nitty-gritty of that in the next part, but those fluctuations when you feel like you're coming off of the medication. A lot of times it's when you can feel that brain fog, where you feel like things just aren't clicking the way they're supposed to mentally.

Everyone describes it differently. Some people describe an unsettled feeling internally. Some people feel suspicious when they're coming off of the medication, wondering, are people doing things or conspiring about me behind my back? You can start lacking trust in some people. Then you take the medication and then those kind of subside. It's really person-specific in terms of how they describe what they feel when they're coming off of the medication. For some, it's more depression; some, it's more anxiety; some, it's more of the cognitive deficits; some, it's more the spaced out; some, it's more exacerbation of their chronic pain. It just really varies person to person.

Crista Ellis 00:45:17
Thanks for bringing awareness to that. Parkinson's is such a unique disease person to person, and it's important that we continue to talk about that uniqueness of the disease and the trajectory of it. Thank you for sharing that.

Patty's asking, how does PTSD impact Parkinson's, specifically for our veterans?

Dr. Megan Gomez 00:45:41
Yeah, that's a great question. At the VA, a lot of times the symptoms can overlap, just like in depression. Sometimes it can be hard to decipher. The person doesn't want to go to the party. Is that because of their PTSD symptoms? Is it because of the Parkinson's? Is it because of the depression? I think it really, again, requires someone to ask the questions. What is it about this party that you aren't looking forward to? It may be an identifiable cause.

It may just be those low levels of dopamine again, which don't make anything feel appealing. The PTSD and the Parkinson's can both cause disruptions in sleep. A lot of times when someone is meeting criteria for PTSD, it depends: is the person having nightmares? We know that people with Parkinson's can act out those nightmares. We see a lot of overlapping challenges regarding sleep and also that irritability, of course, being more rigid, not having that cognitive flexibility.

I think one thing to keep in mind is that if you see a psychiatrist for PTSD symptoms, sometimes some of the medications prescribed to treat PTSD are dopamine blockers, which can in turn negatively affect your Parkinson's. If you do have PTSD and Parkinson's, I think it's worthwhile to have a pharmacist do a medication reconciliation just to make sure that those PTSD meds aren't negatively affecting the Parkinson's, because sometimes the prescriber is thinking of the PTSD but not the impact on Parkinson's. That's something I see quite often.

Crista Ellis 00:47:45
Is there a resource at the VA or, you know, a specific expert that you might suggest reaching out to in managing PTSD and Parkinson's disease?

Dr. Megan Gomez 00:47:59
That's a good question. I know here at Long Beach there is, but in terms of a national person, I would start with the PADRECC and see what resources are available there. I can't speak to a national expert on that, but that would be wonderful if there's someone who's versed in both.

Crista Ellis 00:48:20
I was thinking perhaps a neuropsychologist can see that bridge between a movement disorder specialist or neurologist and someone who's treating PTSD.

Dr. Megan Gomez 00:48:32
Yeah, that's a good idea.

Crista Ellis 00:48:35
We got a lot of questions during registration, Dr. Gomez, about anxiety. I just appreciate you offering a more in-depth, foundational knowledge and understanding of what anxiety looks like in Parkinson's and how it impacts our lives. If anyone here has any questions to propose to Dr. Gomez specifically about anxiety that she has not answered in her presentation yet, please feel free to submit your questions.

Let's see. Oh, we did get a question about caregivers. Are there any words of advice or suggestions, guidance that you might offer caregivers who are actively building their skills and navigating the progression with Parkinson's? Not the person with Parkinson's, but how the care partner can also navigate this change in their lifestyle, perhaps, and in their relationship with their loved one?

Dr. Megan Gomez 00:49:34
Yes, I think that is such a huge and important topic. I would encourage everyone, every spouse or family member who has someone with Parkinson's, to seek their own mental health treatment. I was talking with a caregiver just earlier this week about how sometimes you're so enmeshed at times with the person with Parkinson's. We were laughing, saying it can sometimes feel like Parkinson's by proxy because you can be so attuned to those fluctuations.

I remember when I was with my grandpa and he was on, whoo, I was good. I knew he was feeling good, moving good, thinking well. Then when I could physically see him coming down and going off, I myself would get anxious just empathizing with how he was. He was more likely to fall then, and he was more likely to say mean things then, and he was more likely to be impulsive then.

It can feel like an emotional roller coaster for the family watching the person with Parkinson's have those fluctuations, and you can almost mimic that in your own body. That helpless feeling of when they're off but knowing it's not time for their next dose and tolerating that. I think self-care is so crucial for family caregivers, to not try to get so symbiotic with the person with Parkinson's, taking that time away. For the person with Parkinson's and the family, remember the next dose is coming.

They'll likely feel better, but just focusing on yourself, getting out of the house. Even if the person with Parkinson's doesn't want to go on the walk, you should still go. Even if they don't want to go to the party, you should still go. I think having a place where you can navigate those feelings of guilt, should I go by myself? Should I stay at home? There are just so many conflicting thoughts and feelings that I think it's important to have a space for the families to process that.

We know caregivers have much higher levels of depression and anxiety than people who aren't in that caregiver role.

Crista Ellis 00:52:04
Can't stress enough getting our own support, right? For those of us who are supporting others, supporting ourselves.

Dr. Megan Gomez 00:52:12
Yes.

Crista Ellis 00:52:14
We had a question in here. I'm trying to find it again in the Q&A. They were saying how, and this came from James, but I believe it's his wife who's writing in on his behalf, her husband is not experiencing these fluctuations as you described, these ups and downs and on and off periods between medication, and it's making it challenging for them to identify when he should take his next dose of dopamine. Do you have any words of wisdom to share to help guide these non-fluctuation signifiers that aren't happening for them?

Dr. Megan Gomez 00:52:52
No, I would just recommend taking the medication as prescribed by the neurologist. Usually there's that set schedule, and I think being diligent about following that schedule is really important. If you don't have those fluctuations, I think that's great. If you do feel more even-keeled and balanced, I think that's the goal. I think sometimes when we are having those on and offs, that's when we do want to bring it up to our doctors to see how we can minimize those fluctuations.

Crista Ellis 00:53:29
Great. That was the final question that we've gotten relative to... Oh, here's another question. Charlotte's asking, what if a patient refuses to take their medication? What would you have to offer?

Dr. Megan Gomez 00:53:46
Yeah, that's a tricky one, but one that comes up a lot. Again, I think what I could do from my perspective is really try to understand why the person is refusing to take the medication. Sometimes it can be, again, that suspiciousness that you're trying to poison me, this isn't really my medication.

Sometimes people don't like the way the Parkinson's medication makes them feel. Sometimes they feel nauseous. Sometimes they have that low blood pressure that makes them feel dizzy. I think there are a lot of reasons why people don't want to take the medication. Sometimes people just emphasize how exhausting it is to have to take medication every few hours, how it impacts your mood, having to take so many pills throughout the day. I think it would depend on why the person doesn't want to take their medication and trying to work with them to come up with a plan of action.

Crista Ellis 00:54:57
Frank from Buffalo, Wyoming, is asking, how insistent should a caretaker be in getting a person with Parkinson's to exercise if there seems to be an apathetic attitude on the part of the person with Parkinson's? How insistent should this caretaker be on getting their loved one to exercise?

Dr. Megan Gomez 00:55:18
Million-dollar question. I think caregivers are constantly having to toy with, how much do I push? I don't want to be a nag. I'm tired of reminding them. I'm tired of being a cheerleader. If they don't want to do it, how much should I push, and how much should I lay off? Oftentimes, I'll ask the person with Parkinson's, what do you want? Do you need that kick in the butt to get you going? You know what's good for you. What's the best approach? What's the most effective approach?

I think that's a real issue. How much do I push? When do I push? I think time of day can impact that. If you feel that the person with Parkinson's does better in the morning, try to exercise then. If you find a type of exercise that the person is less resistant to, try to encourage that exercise. If there's someone that they like exercising with, try to pursue that. But I think that's so common. How much should I push the person to exercise? How much should I push them to stop using certain substances like alcohol or smoking marijuana? It's such a fine line and delicate thing to know how to approach.

Crista Ellis 00:56:53
Thanks, Dr. Gomez.

I know we're getting a lot of questions about supplements. If our staff members present here could offer some resources in the chat for navigating the use of supplements and Parkinson's disease, that would be helpful so we can stay on course with our non-movement symptoms webinar today. Here's a good reminder: if you haven't had any water yet, stand up for a few moments, drink some water, and Dr. Gomez is going to continue us through the second part of her presentation today. Dr. Gomez, thank you for your time. We will have another question and answer session with her following her presentation on treatment, so I'll see you on the other side.

Dr. Megan Gomez 00:57:47
All right. Here we go. Let's talk about quality of life, and this is something that I know was coming up in some of those questions. I wanted to just bring some attention to the stages of grief for chronic illness. This is not specific for Parkinson's disease, and we see these stages of grief for lots of different types of chronic disease, including Parkinson's. Of course, at first, denial can be a really common response to getting a diagnosis of Parkinson's. Then there can be the pleading, bargaining, and desperation.

I'm willing to do anything if it will take this Parkinson's away. The next stage can be anger, and of course, these don't have to occur in sequence. You can skip. You can go back. You can start at different points in the grief process, but anger is a big one. I think not trying to repress the anger and learning positive ways of addressing anger is a big one. Anger in and of itself is not a bad emotion. It can be a really helpful emotion, and I think learning ways to channel that anger in a way that isn't destructive or hurtful to ourself or to our loved ones is really important. I think anger serves a lot of functions.

Anxiety and depression, again, as I mentioned, in Parkinson's can be a part of the grief, but it can also be a part of those physiological changes and the drop of dopamine and other neurotransmitters. Loss of self and confusion, which is going to be something we go into more detail about. Then reevaluation of life roles and goals. What am I going to do? What is my life going to look like with Parkinson's? What type of husband or wife am I going to be?

What type of grandparent am I going to be? What type of friend am I going to be? What are my goals? What I had envisioned for my retirement is now completely shattered, and I have to reinvent what these years of my life are going to look like. Then finally, acceptance. Rather than pulling on that tug-of-rope and putting a lot of energy into fighting this disease, sometimes we get to a place where we drop the rope and we stop fighting, and we find that we can use that energy in more meaningful ways.

Responses to disease, again, not specific to Parkinson's. One is that the Parkinson's disease disrupts all domains of your life. Every area of your life is affected. Financially, it's affected. You had to stop working because of the Parkinson's. Relationships are affected. All of this stress and your symptoms are causing a negative impact on your life. Socially, you've pulled back from your friends. You've isolated from them.

Dr. Megan Gomez 01:01:20
There can also be the rejection, neglecting and avoiding the disease. If I don't pay attention to it, it's not there. I'm going to carry on with my life as if I never got the diagnosis and pretending that all is well, not going to think about it, not going to pay attention. Acceptance when you incorporate it as a part of your identity. I say part of identity because it doesn't assume your whole identity. When you feel like you're able to accept it, you're not as overwhelmed by it.

Then enrichment. The Parkinson's has enabled me to make positive changes, and it's enabled personal growth. That's the goal, right? When we feel like Parkinson's has changed our perspective in a more positive and meaningful way, where we're not wasting our worries on things that really don't matter, maybe instead we have really identified what the most valuable parts of my life are and how I can really focus on those parts in order to have that be an enriching experience.

Let's talk a little bit about identity. I hear a lot of folks say, how the hell did I come to be like this? Because this isn't me. I don't recognize myself when I look in the mirror. I don't recognize myself in photos. I can't believe that I'm in a wheelchair now. I can't believe that this is my life.

I think of the stereotypical identity crisis, which is very common for people in the general population. I think people with Parkinson's, maybe you're not buying that red sports car, but you do have to reevaluate who you are and what your roles are, what you can contribute, and how you can feel like life is worthwhile even when you have Parkinson's. Again, for some people, they are able to accept the diagnosis and keep trucking along without much difficulty, and for other people, the diagnosis really seems to turn that life upside down.

Again, emphasizing how it's so different for everyone. Caregivers go through this same identity crisis. It's not what they envisioned for their retirement. They never thought that they'd be back in a caregiving role. Maybe they have already grown their children and they are thinking, oh my gosh, now I'm having to be a caregiver all over again. Is that something that I can do, that I want to do? I think the identity crisis is both the person with Parkinson's and the family members who love that person.

How much does my disease define who I am? How does your Parkinson's fit in with the story of your life? How will your trajectory, how will your life, look different because of the Parkinson's? Again, some people are very thoughtful and like to think about these types of things, and some people avoid any such discussion or even the thought of these topics.

When your body stops working the way it used to, how do you respond to that? I don't look the same, I don't act the same, I can't do the same things that I used to do. There can feel like a real loss of self and suffering as you feel like things are slowly being taken away from you.

What is the most challenging loss to accept? I think this really varies person to person. For example, if you were a college professor, maybe your speech, your voice, being able to express yourself, articulate ideas, teach, having that ability to verbally express yourself is very important. Maybe being in a wheelchair, using a walker, or using a cane, that's not as big of a deal because you're still able to engage in your professor role, right? In contrast, if you were in construction, if you were a handyman, if you were able to fix all things around the house and now you're having to pay someone to do things that you could very easily do before, that would be really difficult for you.

Dr. Megan Gomez 01:06:25
Maybe you're a painter and maybe the tremor or the reduction in your motor coordination is hard for you. I really think that challenges are specific to the person and what was wrapped up around their identity. For some, it's the intellectual aspect. The cognitive changes are the most difficult because their intellect is what gave them that sense of pride and made them feel like they were them. So I think depending on your identity and your life, your occupation, your hobbies, what gave you that sense of accomplishment, if that is touched, I think that can be really tough.

Of course, we always feel that sense of isolation, right? Why do my friends get to do what they want to do, go on vacation and travel and still get to work and be physically active, and I can't?

I think it's very easy to compare ourselves to other people. Or you feel self-conscious when you go places. You feel like people are distracted by your tremor or by the way you eat if you go to a restaurant. I think there are a lot of things that can contribute to feeling isolated. Maybe you don't feel like you're being invited places as much because people feel like it would be too hard for you. Or sometimes you can feel isolated from your family. Maybe they don't know how to respond to the Parkinson's, or maybe they pretend like it doesn't exist, or they don't want to hear about it because it can make them feel sad or anxious.

Again, we know that Parkinson's is incredibly complex in terms of not everybody's the same. Some people never experience certain symptoms. Some people progress quickly. Some people progress very slowly. Some people are very responsive to the medication. Some people have really nasty side effects of the medication. Some people seem to still have a great quality of life despite the Parkinson's. For some people, it really takes a toll on them.

I think it certainly can impact research in Parkinson's because it is so complicated and people respond so differently to it. That's why I love being a psychologist because I get to work one-on-one with people and with families to see how they're doing with all of the complexities of Parkinson's.

Jordan Peterson says that the fundamental problem of life is complexity, that life can get so complex that you'd rather be dead, right? Of course, we can't talk about depression without thinking about suicidal thoughts. Things can get beyond your control. Multiple catastrophes can happen at the same time. Life can feel like it gets too complicated and there's no way out.

I think acknowledging Parkinson's is complex and sometimes it feels like we're just buried under all of these stressors, and it can be paralyzing in some ways, knowing how to move forward.

Dr. Megan Gomez 01:10:21
Again, those fluctuations can also add to caregiver burnout. The things changing from day to day, hour to hour, it can be difficult to make plans, it can be difficult to commit to things because it may sound good now, but it may be a really hard day when the activity comes up on the calendar. Again, the medication wearing off, it can worsen depression, anxiety, cognition, fatigue, irritability, pain, and motor symptoms.

Fluctuations can be different in various settings with different people. Sometimes I'll hear from family members, he's so apathetic when he's with me, and then so-and-so will come over and he perks up. It can be confusing as to how that happens or why that happens. It can be hard to have consistent expectations because someone who is on may be able to do something, but then when they're off, they have challenges. So it can be really hard to know, going back to that caregiver question of how much do I push?

I also hear from caregivers, how much should I help? How much should I offer to do something, or should I let them try to do it on their own? I think there's both ends of the spectrum.

Impact on the family. I use this slide in almost every talk I give because I hear these questions so much. Is this John? Is this Parkinson's? Is he just not trying? Is he being manipulative? Is he faking? Are these genuine things that he's struggling to do? Are these complaints authentic? It's hard to know when to push and when to lay off. Should I be mad at him? Can I not blame him?

Is it the disease? How much personal responsibility should they assume? Is it outside of his control? Does he just not care? I don't want to be insensitive. How much should I try to help? Again, I think these are all completely normal and common questions that families are often asking, and it can feel like you're tiptoeing. You want to be helpful, but sometimes it seems like your attempt to be helpful can be irritating to the person with Parkinson's. Sometimes they respond well to your offer to help, and sometimes they're offended by your offer to help, which again, I think is so hard for families.

Again, I think it's so important to understand that those levels of dopamine can really impact all of these things.

We talked about those fluctuations. Talking about marriages in particular, we know through the statistics that three out of four marriages end in divorce when one spouse has chronic illness. It's because it's stressful. It's hard. There's so many adaptations that need to happen. Roles are changing. Lifestyles are changing. Routines are changing. It can really impact every aspect of a marriage. Intimacy looks different. Communication can look different. That initiation of conversation, I hear often from spouses that if I don't ask them how they're doing, they won't ask me how I'm doing. Or it feels like it's all about the person with Parkinson's. Some people will say there's three of us in this marriage. Parkinson's is the third element in a marriage.

I think couples therapy can be super helpful, as well as the person without Parkinson's being in their own psychotherapy as well.

Dr. Megan Gomez 01:14:46
Questions come up about meaning making. Sometimes people will say, what is the meaning of all of this? This kind of speaks to the theology background. Why do bad things happen to good people? How did God let this happen? What does my faith in God look like now? It can change your spirituality. All of these existential questions can come up.

Let's talk about treatment. I encourage everyone to talk about these issues: talking with your family, talking with friends, talking with medical providers, and being honest. I think that's really the first step.

There are a lot of different treatments available. Of course, talk therapy and medication are some of the most common, most helpful, and sometimes if you can do the two in conjunction, that can be really helpful. We talked about how people with Parkinson's have that low level of dopamine. They can also have those low levels of other neurotransmitters such as serotonin or GABA. Sometimes medication like an SSRI can boost the serotonin levels or boost the GABA levels. Not everything has to be focused on the dopamine.

I encourage everyone to have a daily practice, figuring out the sleep. We know that people with Parkinson's sleep less hours than people without Parkinson's, their quality of sleep is reduced, and they wake up more frequently than people without Parkinson's. Really focusing on sleep can be crucial. If you don't sleep well, you're not going to be in a good mood the next day, you're not going to be motivated. That's only going to compound these symptoms.

Diet, of course, is very important. We know that there are some theories that Parkinson's is a result of inflammation. Eating a diet that is low in those inflammatory responses. Of course, things like vegetables, fruit, meat are much better than processed foods, which are having that response of inflammation in our body, in our brain.

Sunlight is so crucial. I've been doing a lot of research lately on sunlight and how important it is on a sunny day to spend at least five or ten minutes in direct sunlight without sunglasses on. I know this can be in particular difficult for people with Parkinson's because one of the dopamine pathways is directly to our retina, and our retina needs dopamine in order to regulate the eye, so in order to not make it so bright when we're in the sun.

A lot of people with Parkinson's feel like it's too bright when they're in sunlight, or they feel like they can't see when it's dark. That dopamine in the retina can really impact the way our eye automatically adjusts to light. Nevertheless, getting that direct sunlight in the morning in particular is so important for the way our body is working, for our sleep cycles, for our mood, for our alertness. I could go on and on. Then physical exercise. I think if there's four things to focus on, it would be these.

Dr. Megan Gomez 01:18:32
Remember pain and effort go hand in hand. When we feel that pain of wanting something, that dopamine gets us motivated to do it. A dopamine spike is needed to crave something, and then there's that dip in dopamine to motivate us to move. Did we get the dopamine spike when we experienced what we wanted? Sometimes we have the ice cream and it never really felt all that great. Sometimes we did the thing that everyone's telling us to do is good for us, and we don't feel any better.

All of these things inform whether we repeat activities or stop the activities.

Remember your next dose of the medication is coming when you're feeling off and you start to feel anxious, you start to feel suspicious, you start to feel panic, you start to feel cloudy. Knowing that next dose is coming, and don't wait to do something until you feel like it, because the reality is you may never feel like doing it.

The grass isn't greener on the other side. It's greener where you water it. I think this is really important to remember. Everyone is dealing with something. Sometimes it can feel like we have it harder than other people. So there's choices, right? You can have the choice or make the decision that nothing you do means anything, and therefore you don't have to do anything and nothing is your responsibility. Or you can decide everything you do matters. If you make a mistake, if you betray someone, you must be responsible.

We know that the more responsibility we have, the more meaning our life has, the more purpose we have.

This talks about whether we feel like things happen to us, like we're the victim, or if we make things happen, if we are going to take control and sort of be the driver of our life.

This is a quote by Charles Darwin. It says, "It's not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change." We know that Parkinson's is constantly throwing us curveballs, and our ability to roll with the punches, to be flexible and to adapt, is really crucial. So how do we reinvent our identity? New activities and a new sense of self. What can we still do? What kind of activities will support your new identity?

I think we can go down a really negative rabbit hole: I can't do this, I can't do this, I can't do this. I think shifting to the things that you can do.

For the sake of time, I'm going to breeze through some of these. I want to say, don't believe everything you think. Just because you have a thought, doesn't mean it's true. Just because you have the thought, I would be better off dead, doesn't mean it's true. Just because you have the thought, I'm a burden, doesn't mean it's true. Just because you have the thought, my future is doomed, doesn't mean it's true. In psychotherapy, oftentimes we work to create distance between the thought and what you believe.

Sometimes people think, I have the thought, it must be true. A lot of times, it's not.

We develop negative coping skills because they work to help us survive. Sometimes we're workaholics. Maybe something happened in our childhood that made us feel unworthy or inadequate, so we became workaholics. Maybe we became addicted to exercise. We worked out. We had an amazing physique. We ran marathons. Now we're having to learn new coping skills. Maybe we can't be the workaholic. Maybe we can't be the athlete we used to be. A lot of times we're having to switch our coping skills. Maybe they worked then, but because of our Parkinson's, they don't work now. So learning new ways of coping.

Dr. Megan Gomez 01:23:09
I think it's really important to create a structure for your day. Don't wait until you feel like exercising because you might not feel like it. Schedule it in. Reserve a time with your trainer so that you do it because it's scheduled and you have to pay for it either way. Oftentimes, we start with asking, do you have a job? If you don't have a job, it can be really hard to get motivated, to get dressed, to take a shower, to get going. Unless you have somewhere to be, it can be really tough to get that push to get going.

Lessons learned: being present in the here and now. Life is not about being happy. I think sometimes we strive to be happy. My encouragement would be to find what's valuable. What are your values? Is it to be a generous person? Is it to be a source of encouragement for your grandkids? Is it to be a good partner? Is it to do community service? Is it to write a check to organizations that are doing good work? I think it's really important to not have happiness as the litmus test or what other people are doing around us, finding out what is most valuable and meaningful to you.

What matters most to you? If you didn't have Parkinson's, what would you be doing? Really trying to come up with behaviors and actions that you can do that are in line with your values.

With that, we will stop. I will be happy to take any more questions that we have.

Crista Ellis 01:25:03
Thank you, Dr. Gomez, so much. I know we got several questions coming in as you were closing your presentation, so we'll jump in just for the sake of time that we have. We're so limited in time. There's always so much to cover.

Joe asked us, what are some methods to help us get reinterested in activities that we used to love?

Dr. Megan Gomez 01:25:26
I would challenge that question a little bit and ask, what are new activities that we can do? I think sometimes we get stuck in things we used to love or be able to do. I think sometimes it's starting here. What are our capabilities now and what are things that we can do that are in line with those values, right?

Maybe it's a value of being a really good neighbor and thinking of things we can do that are in line, in service of being a good neighbor, and really using that to shape our goals, using that to come up with our to-do list. Starting with the values and then coming up with behaviors that are in line with those values.

Crista Ellis 01:26:21
Yeah, so there are these formerly loved activities, right? It was a version of your former self, your former identity, the things that you formerly liked to do. I love that you're encouraging us to try something new, try new things.

Dr. Megan Gomez 01:26:35
Yes, we know that novelty is so important in giving us those feel-good chemicals. Doing something new, I think, is where I would focus on.

Crista Ellis 01:26:49
Joe says thank you so much, Dr. Gomez. I just saw them write in there.

Kathy is asking us, so they're having some trouble with some friends, and it sounds like they're wanting to learn how they can cope with friends or family sort of disappearing from their life because they can't deal with the fluctuating symptoms. Now it's just you and their care partner, their spouse. They feel alone, isolated, and lots of loneliness. So there's a difference between alone and loneliness. How do we deal with friends and family disappearing because they just can't deal with their Parkinson's?

Dr. Megan Gomez 01:27:28
Yeah, I think I would focus on we can't change anyone except ourselves, right? I think allowing yourself to feel the emotions as a result of that and then figuring out other ways to get that social support and engagement. Maybe it's fostering new relationships. Maybe it's if you have a church community, maybe joining a Parkinson's support group or a caregiver support group.

I think there are so many ways of focusing on other relationships because I don't know if the investment is necessarily worth the payoff in pursuing those relationships that have been hurtful. Again, maybe those relationships, I mean, if it's family, it's different. If it was a friend, I think it's absolutely okay to say, they were great friends for that phase of my life, and now I'm in a new phase, and how can I get that social support and connection with where I am now?

Crista Ellis 01:28:34
Orlando says, as someone living alone with Parkinson's and I have no caregiver, what are some resources for how to communicate with others when my symptoms are fluctuating?

Dr. Megan Gomez 01:28:46
That's a great question. I think preparation is key, and I learned so many ways that my patients prepare for things. Preparing for how to communicate when you're off. Maybe they'll have prepared something in advance. Maybe they have something that they either wrote or printed out, if they're having difficulty expressing themselves, just having their thoughts on paper already. Really being creative and planning ahead. Of course, it doesn't always work out as planned.

Trying to do things when you anticipate that you'll be on, but of course, things can turn on a dime and it's not always like that. I think trying to think of how you can prepare in advance so that you don't kind of fall apart in the moment. I think preparation is really important with Parkinson's, anticipating those off symptoms and figuring out what you'll do in those situations ahead of time.

Crista Ellis 01:29:56
Our final question for today's webinar from an anonymous attendee, and they say, would you recommend pairing a rewarding or sort of a motivating action after a therapy session or exercise? It sounds like positive reinforcement is what she's asking about.

Dr. Megan Gomez 01:30:13
Yeah, absolutely. If that's going to motivate you to do it, absolutely. It doesn't always have to be like, sometimes it could be an ice cream, but I think sometimes it can be watching a TV show that you enjoy, or maybe you got a magazine in the mail but saving it until you feel like you deserved it. Whatever things you enjoy, absolutely save it until you've done something that you don't want to do, and then you'll get it.

Crista Ellis 01:30:45
Thank you, Dr. Gomez. Before I do closing announcements, are there any final words or another quote you might want to share with us before we jump into closing?

Dr. Megan Gomez 01:30:56
Yeah, I think the thing that comes to mind is that you guys are veterans. I think there's such a level or sense of camaraderie between veterans where it's like maybe you don't know each other, but you know that you have each other's backs. It warms my heart when I see the veterans in my Parkinson's support group, when they know someone's having a bad day, they attended the support group, and they give that person a call afterwards, hey, just wanted to check in, to let them know that they aren't alone.

I think if you can participate in a veteran support group for people with Parkinson's, that is even better because there is that sense of brotherhood and sisterhood where you already get each other, and there are such shared experiences from your time in the military. I think knowing that there are people that care about you, you just have to get connected.

Crista Ellis 01:32:00
Thank you, Dr. Gomez, and thanks to everyone who joined us for today's webinar. I really thank you, Dr. Gomez, for all the time that you put into this presentation, showing up today and being so generous with your knowledge and time. We really appreciate you.

Dr. Megan Gomez 01:32:18
Thank you so much.

Crista Ellis 01:32:21
Join us for our next webinar for our veterans, Planning for the Future. During this webinar, we will offer tips and means of support to help us prepare for the future and what that might look like. You can learn more about our veterans webinars and register to attend at Parkinson.org/Veterans.

If you had a question today that was not answered, please reach out to our Helpline by calling 1-800-4-PD-INFO or emailing Helpline@Parkinson.org. You can use that same contact info to order our free resources, educational book series, and our hospital safety kit. We thank you for joining us today, and I hope to see you again soon. May you be well. See ya later.

Megan Gomez, PhD, Clinical Psychologist
Tibor Rubin Medical Center
Long Beach, CA