Veterans and PD: What You Need to Know

Shira Rosenfeld 00:00:00
Good morning. I'd like to first welcome everyone to this program. My name is Shira Rosenfeld, and I'm the vice president of strategic initiatives for the Parkinson's Foundation. I'm delighted to be here today with all of you. We are very excited about this event to reach veterans with Parkinson's disease and their care partners and families. This is our first joint event with the Veterans Administration and with the Ralph H. Johnson VA Medical Center, and we are so pleased and proud. First, a special thank-you to Dr. Nessa Hinson and the entire team at the Ralph H. Johnson VA Medical Center. And to our panelists, moderators, amazing volunteers, and all of the Parkinson's Foundation staff who worked so hard to put this event together. And a tremendous thank-you to our program sponsors for their unwavering support.

Acadia, Acorda, Amneal, Abbott, Kyowa Kirin, Sunovion, and Supernus. To learn more about these sponsors, you can click on the link in the chat below.

For those who are new to the Parkinson's Foundation, and we are excited that you are joining us, the Foundation is the nation's largest community for people living with Parkinson's disease. Our mission is to make life better for people with Parkinson's disease by improving care for everyone with PD, advancing research toward a cure, and empowering and educating our global community. The Foundation is committed to reaching every person living with PD, and a critical way we do that is through our partnerships.

And with the more than 110,000 veterans living with Parkinson's disease today, the Foundation is so proud to have established last year a formal partnership with the Veterans Administration, with the overall goal to improve the quality of life for veterans living with PD and their care partners through greater access to education, resources, and support.

Shira Rosenfeld 00:02:18
The Foundation is working with the VA on a national level, a regional level, and a local and community level, working to develop and build on relationships with the six VA Parkinson's Disease Research, Education, and Clinical Centers across the country, referred to as PADRECCs, and the 51 VA Consortium centers like the Ralph H. Johnson VA Medical Center in South Carolina, to provide the best PD care and resources, combined with clinical collaboration and training through the Foundation's own Centers of Excellence, all to promote awareness and access to the VA's and Foundation's collective resources, educational materials, healthcare services, community and support.

We have an incredible day planned and are excited that we have over 1,000 people registered from all 50 states and at least four different countries, including Ecuador, Nigeria, and India. Welcome, everyone.

I know we are all ready to get on with the day, to hear from our experts and our veterans. Just a few housekeeping items before we do that. As you saw in the program agenda, we will hear from four different panels today, and each panel discussion will be followed by a live question-and-answer session. Please submit your questions through the Q&A icon at the bottom of your Zoom viewing panel.

To kick things off, we are first going to hear from Jay Phillips, a veteran living with PD, a member of the Charleston, South Carolina community and a dedicated Parkinson's Foundation volunteer. Then we will turn it over to Dr. Christina Ketron, who is a doctorally prepared nurse practitioner specializing in mental health at the Ralph H. Johnson VA Medical Center in Charleston. Dr. Ketron is moderating our first panel of medical experts, who will focus on Parkinson's disease treatment and care. So with that, thank you all again for joining us today, and enjoy the program.

Jay Phillips 00:04:34
My name is Jay Phillips, and I live in Summerville, South Carolina, where I retired in 2012. From 1967 to 1969, I spent 21 months in Vietnam serving in the infantry. When I was medically discharged from the Army at the end of 1969 due to the residual effects of gunshot and shrapnel wounds, I thought I had paid my dues. Little did I know that over four decades later, in 2011, the cost of my service to my country would be raised anew when exposure to Agent Orange caught up with me and I was diagnosed with Parkinson's disease.

I knew when I retired that I would have to replace the outstanding civilian care I received through my employer's health plan with either Medicare or VA treatment. Frankly, I was worried.

Happily, I discovered that the providers accessible at my local VA medical center are the same highly trained experts that non-vets rely on, that I can obtain my meds through the VA, and that my local VA also offers specialty programs for veterans with Parkinson's, such as a physical therapy program and a program for my wife to help her better understand how to help me living with the disease.

Today, I have four pillars that support me as I live a decade into my life with Parkinson's: my wife; top-notch medical care through the VA; a regular exercise program focusing on issues of concern to Parkinson's patients, for example, balance control and fall prevention; and the outstanding materials and information available through the Parkinson's Foundation.

Annie Long 00:06:19
Right, so before we get on to our expert panel, we'd like to learn a little bit more about our audience today. If you could take a moment, we're going to launch a quick poll, and we'd love to know what branch of the military you or your loved ones served in.

All right. The results are in, so hopefully all of you can see this. Looks like we have representation from every branch of the military today, at least the ones listed on the screen. Again, from the Parkinson's Foundation, we are just honored to have you here, and thank you for your service. Now, without further ado, we're going to get to our expert panel. Thank you for being here today.

Dr. Christina Ketron 00:07:38
Thank you for joining us for today's expert panel. My name is Dr. Christina Ketron, and I will serve as the panel moderator today. Now it's my pleasure to introduce our expert panelists.

Dr. John Morgan has served as the Charlie Norwood VA Medical Center neurologist with a focus in movement disorders since July of 2003. He is a member of the National VA Parkinson's Disease Consortium and has served as a co-investigator on two VA Merit Review grants. Dr. Morgan is also professor of neurology, director of the Movement and Memory Disorder Programs, and director of the Parkinson's Foundation Center of Excellence at the Medical College of Georgia at Augusta University. Thank you for being with us today.

Dr. Vanessa Hinson is chief neurologist at the Ralph H. Johnson VA Medical Center in Charleston. She is also professor of neurology and director of the Parkinson's Foundation Center of Excellence at the Medical University of South Carolina in Charleston. Dr. Hinson's special interests include the interdisciplinary care approach to Parkinson's disease, non-motor symptoms of PD, and finding new innovative treatments through clinical research. Thank you for being with us today.

Dr. Vanessa Hinson 00:08:54
Thanks for having me.

Dr. Christina Ketron 00:08:55
And last, Dr. Burton Scott is a movement disorder neurologist and sees patients at Duke University School of Medicine, a Parkinson's Foundation Center of Excellence, and the VA Durham Medical Center. He is a member of the Parkinson Study Group and the Huntington Study Group and participates in a variety of clinical trials focused on improving the management and treatment of Parkinson's disease and Huntington's disease. Thank all of you for being here today.

We're going to get started and talk about an overview of Parkinson's disease and answer some of the questions that were sent in earlier. Dr. Morgan, we're going to start with you. How do doctors diagnose Parkinson's? And what kind of symptoms do you see in clinic when you see patients?

Dr. John Morgan 00:09:43
Well, classically, patients present with tremor as one of the most common symptoms that brings them into care. However, not always is tremor the main problem. It may be slowness or stiffness of one side more than the other. It may be difficulty doing different activities of daily living like brushing their teeth, using their one side, doing different activities where the side doesn't work as well. But classically, tremor is the most common reason people come to see me with early Parkinson's.

Dr. Christina Ketron 00:10:15
Okay. Are there other diseases or issues that Parkinson's can look similar to, such as maybe drug-induced parkinsonism? Do you see those often in clinic as well?

Dr. John Morgan 00:10:28
Yeah, certainly. In the VA system, a lot of folks are battling mental illness, and they may be taking antipsychotics, which block dopamine. The problem in Parkinson's disease is loss of dopamine in the brain, essentially, is the main problem that causes the motor symptoms, and we typically replace that dopamine with different medications. But patients with psychiatric disease, bipolar disorder, schizoaffective schizophrenia disorders may take antipsychotics that block dopamine, and they can often look like they have parkinsonism.

There's also some mimics of Parkinson's disease like multiple system atrophy and progressive supranuclear palsy and some other cousins that can be a little harder to live with than Parkinson's disease and harder to treat. We also diagnose folks with those conditions as well.

Dr. Christina Ketron 00:11:19
What about vascular parkinsonism? What does that look like whenever they present?

Dr. John Morgan 00:11:25
Yeah, vascular Parkinson's, the classic label for that is lower-half Parkinson's, essentially. A patient comes in with a lot of shuffling and gait difficulty, maybe freezing of gait where their feet get stuck when they try to walk, those kinds of issues. And they may not have a whole lot in the uppers. On finger taps, we normally check finger taps for speed of movement, and they may be pretty good in the uppers, unlike a Parkinson's patient who usually has one side pretty slow in the uppers.

Vascular Parkinson's is common given hypertension, diabetes, cholesterol problems, and the prevalence of vascular disease in many veterans.

Dr. Christina Ketron 00:12:07
Parkinson's disease can be more of an umbrella term for many other different things.

Dr. John Morgan 00:12:13
Well, yes, I guess there's lots of different diseases that may be under this syndrome of parkinsonism, and then you have to sort out what the underlying process is for the patient.

Dr. Christina Ketron 00:12:26
And, Dr. Hinson, what causes Parkinson's? Our patients often ask that question, right?

Dr. Vanessa Hinson 00:12:35
That's probably one of the most common questions I get in the office. Why me? Why do I have it? How did I get it?

Dr. Ketron, some patients have genetic causes of parkinsonism, but that's really the minority. We estimate that about 10% of people with Parkinson's disease have a gene that we can identify that led to them having it and that could be passed on from generation to generation. The first one of these genes was discovered in 1997. It's called SNCA and encodes for a protein that's relevant at the brain level and can cause these Parkinson changes to take place. But that also means that in 90% of cases, we don't have such a cause identifiable.

In the last 10 years, the science has really advanced to understand what is going on in those cases. We believe that there's usually a combination of several things coming together. We believe that patients usually have what we call an at-risk gene, which means that having the gene alone is not enough to then also get the disorder, but that something else in addition to having that risk gene must happen to tip that person over the edge. So there's about 80 of these at-risk genes that we know about right now. There's probably many more that we're not smart enough to detect yet.

And if you have such a gene, your chance of getting PD about doubles, but it's still not a guarantee. There's something in the environment that can tip that person over the edge. There are certain risk factors in the environment that we know of. For example, people who weld professionally, because of what they're exposed to, they're at higher risk. But not every welder gets Parkinson's disease. You also have to have the at-risk gene. That's kind of what we're thinking right now.

Dr. Christina Ketron 00:14:21
So with our veteran population, are they at a higher risk for developing Parkinson's disease?

Dr. Vanessa Hinson 00:14:28
There's already one thing, which is that half of veterans are estimated to be over the age of 65, and advancing age alone is already a risk factor for Parkinson's disease. And then second, some of our veterans have been exposed during their military service to certain toxins that we believe might be relevant in making them more vulnerable to getting Parkinson's disease later in life. As an example, Dr. Ketron, many people have heard about Agent Orange being such a risk factor.

The VA actually declared in 2010 that exposure to Agent Orange during the Vietnam War is recognized as a risk factor for causing Parkinson's disease. Parkinson's disease is now a recognized condition that is attributed to Agent Orange exposure in those folks who were essentially on the ground and were exposed during that time. What this Agent Orange is, it really is, as many of you might know, a combination of two herbicides and also a contaminant. It's a certain dioxin contaminant, which is especially dangerous.

So many animal studies have shown that toxic substances such as this one, or this mixture of three, actually can be very relevant for people to then, decades later, manifest a brain problem like Parkinson's disease.

Dr. Christina Ketron 00:15:57
Are there any updates on service connection as it relates to Parkinson's disease? I believe we've had some new updates recently.

Dr. Vanessa Hinson 00:16:08
So the good news is, coming back to the Agent Orange story, that people don't have to prove. It's not on the patient to prove that this Agent Orange somehow caused my Parkinson's disease. All that the VA requires is to show that you were there, and automatically people qualify for health benefits with the VA, certain prescription drug benefits, and even disability compensation. We really want to encourage people to go on the website. If you just put in VA, Agent Orange, Parkinson's disease, you can file a claim online, but it's much easier actually to go through VA resource officers who can help with that. It's actually a pretty straightforward process.

Dr. Christina Ketron 00:16:50
We often have so many people that are willing to help with service connection, and so we encourage you to reach out and do that if you haven't done so already.

Dr. Scott, thank you for being with us again. When a veteran is diagnosed with Parkinson's disease, what can they expect next? Should they start on medication right away, or should they wait and see how symptoms are going to develop? What does that look like for your patients that you see?

Dr. Burton Scott 00:17:18
What I would say is that getting a diagnosis of Parkinson's disease is basically an explanation of symptoms that a patient's been developing for some period of time. To a certain extent, getting an understanding of what's causing the problems that the patients have can be of some source of help to the patient.

But basically, getting a diagnosis of Parkinson's disease starts one down a path where there are expectations of what will happen, what can transpire with the illness, such as people having more difficulty with the stiffness and the slowness and the tremor that Dr. Morgan talked about. But people can progress at different rates.

As far as starting medications, well, I say we start down a path, the path where you sort of need to assemble your team because this is a chronic illness. It's important to incorporate exercise and regular activity as well as medicines. And then, as far as because some patients, frankly, will find that they can postpone starting medicines depending on how well they do with exercise. Some folks are able to tolerate more tremor just because they find that they get benefit from exercise, and they don't start medicines.

Getting to your second question about when to start medicines, I would say that's very much dependent on the patient. I have some patients that, for example, are lawyers, trial lawyers, and if they have any kind of tremor that shows up when they're in the courtroom, they consider that to be a weakness, or they think that other people will consider that to be a weakness. So they want to start medicine. A trial lawyer wants to start medicine earlier than other folks, I would say, because they want to do everything they can to cover up the tremor. But I wouldn't say that's necessarily the best thing for all patients.

Dr. Burton Scott 00:19:37
I would say that we start medicines when the patients tell us that their symptoms are bothering them enough or interfering enough with their life, with their quality of life, that they need something to help them. And so that can be from the very first visit. We'll start something depending on how the symptoms are bothering folks or not. Or it may be postponed if someone's quite stoic, or they're not bothered by their symptoms, they just want to know what it is. So it absolutely depends on the patient helping us to decide when to start medicine.

That would change if we had a medicine that we knew slowed down progression or we knew stopped progression. We'd start that right away. But there is not such a medicine at this point.

Dr. Christina Ketron 00:20:28
I'm hearing you say it's very individualized. We treat the patient that's sitting right in front of us. We don't always stay to a script because we want to meet that patient where they are and help them. And if we all had a prescription for exercise, we would probably give that out every time we saw a patient, for sure.

Dr. Burton Scott 00:20:50
And we do. Absolutely.

Dr. Christina Ketron 00:20:53
Dr. Morgan, what medications are available and what do they help with specifically? We've talked about tremor. We've mentioned that several times. And overall, do medications slow the progression? Dr. Scott has already kind of alluded to that, so can you expand on that a little further?

Dr. John Morgan 00:21:11
Sure. The gold standard therapy for Parkinson's disease is a medication called carbidopa-levodopa or Sinemet. It's certainly the most powerful drug that we have for Parkinson's. It's been around since the early '70s, and it certainly helps most of the symptoms of Parkinson's. It doesn't always help tremor. Some patients can have drug-resistant tremor, essentially, and they may be a better deep brain stimulation candidate than others. But that's the gold standard.

But there are other drugs that are useful as well and some newer drugs that are out there that have become available for rescue therapy for folks when their Sinemet wears off, their carbidopa-levodopa wears off. There are dopamine agonists, which don't have the same dyskinesia risk, which is the Michael J. Fox kind of writhing and twisting movements that he does or used to do. So there's medications that may be a little milder than levodopa that you can start early, and then levodopa may be started later. And really, there's no perfect way to practice that we all agree on with every patient. So there's lots of ways to treat a patient.

Some may go right to levodopa, especially if they have significant impairment in their ADLs, their activities of daily living, or their gait or their job. They may go right to levodopa if they're very slow and need it. But other folks we may treat with more mild medications to begin with and then gradually get to levodopa later.

Dr. Christina Ketron 00:22:44
I think it also determines what we do based upon when they come see us. They may have had symptoms for several years and had not presented beforehand, not really knowing what was going on, or maybe they didn't want to know. It does depend on where we find them whenever we meet them for the first time.

Dr. John Morgan 00:23:04
I have a patient that has moderately advanced Parkinson's disease with major tremors, and he's a young man in his 40s or so. He doesn't want to take medication, and he hasn't taken medication for six or seven years despite me pleading for him to. Everybody's their own individual, and he exercises a lot and fights it that way. Everyone's different.

Dr. Christina Ketron 00:23:27
And we respect that choice.

Dr. John Morgan 00:23:29
Yeah, they have choices.

Dr. Christina Ketron 00:23:31
Of course. Dr. Hinson, in your experience, how does Parkinson's progress over time? We always have that conversation with our patients about, what is this going to look like in a couple of years, five, 10 years? How does it progress?

Dr. Vanessa Hinson 00:23:45
Yeah, it can progress at really different rates depending on the individual. And I think it comes back to what Dr. Scott and Dr. Morgan were saying: one prescription doesn't fit all, and it's because Parkinson's can vary so much. Some people never have tremor. We've mentioned tremor so many times, but a third of our patients never experience that symptom. They might have more slowness, more stiffness, more tendency to fall and things like that.

The rate of progression, like I said, varies between individuals. In general, Parkinson's is a disease that progresses over years and over decades and doesn't change from today to tomorrow. If the patient calls me and says, you know, yesterday this happened and everything is worse, I'm probably thinking that is not the natural progression of Parkinson's disease. The patient might be experiencing an infection or another acute medical problem that is causing these acutely worsening symptoms.

Like I said, this disorder progresses over many years. Generally, what we see is that within the first two to five years, we can see if the individual person with Parkinson's experiences a form of the disease that progresses slowly or more rapidly. If they're in the slowly progressive category, so to speak, they will probably remain in that category. That means they will continue to progress but at their slow pace.

Dr. Vanessa Hinson 00:25:09
whereas an individual who had a lot of problems from the beginning will have a really much more complicated course overall. And then there are some little things that we watch out for in the individual presentation that can help us prognosticate if you're on the slow track or the fast track. For example, since we brought up tremor so many times, if an individual presents with a resting tremor in one arm, that is actually prognostically a good thing. Usually people with what we call the tremor-predominant form of Parkinson's, where tremor is the most visible symptom, do better. So many of my patients say, well, suddenly I like my tremor. I was really annoyed by it, but now I like it. That's the kind of stuff we watch out for as doctors to help to answer that question, how rapidly will it progress?

Dr. Christina Ketron 00:25:57
And it's helpful for our patients to hear those responses, and it can give some clarity to their fears about progression of their disease. We talk sometimes in stages, and what are the typical stages of Parkinson's disease? And is it really important that we know the stage that a patient is in?

Dr. Vanessa Hinson 00:26:21
I personally don't pay too much attention to numbers. I don't like that too much. I think we should look at the patient as a whole and how they function. Dr. Morgan was using this term ADLs, activities of daily living. I really am more interested in how they're getting along in their life. Like Dr. Scott was saying, the trial lawyer might not be getting along with a little bit of tremor, where I might be getting along with it just fine. To me, these numbers of stages don't mean much. But since you're asking, in research trials, those numbers can be very relevant because if I am, as a researcher, trying a new drug that's supposed to stop the progression of Parkinson's disease, I need to know what stage the patient is in today and what stage the patient is in in two years, and did they progress.

There are stages of Parkinson's. The mildest stage is if the patient only has signs of Parkinson's on one side of their body. That is very rare. We usually see one side is worse, but there's a little bit on the other side, but technically that's stage one. Then stage two is still mild disease, signs on both sides, but normal balance and walking. That's a good stage to be in for many, many years. That's what we try to achieve, is to keep that patient at that stage for as long as we can with exercise and meds. Stage three, we have some balance impairment, but we're walking independently. And stage four, we might be using a cane or a walker, and it is very rare that we see patients go on to a stage five where they can't walk or are in a wheelchair permanently. That's really not the typical presentation of Parkinson's disease.

Dr. Christina Ketron 00:27:55
Dr. Scott, what often classifies symptoms as motor or non-motor? We speak in those terms, and often patients don't always understand our language, but we want to break it down simply for them, and explain motor symptoms and non-motor symptoms and what that means. What are the non-motor symptoms of Parkinson's that we see in clinic often?

Dr. Burton Scott 00:28:21
As you said, the motor refers to stiffness and slowness and tremor, but there's a variety of additional symptoms that occur with Parkinson's, but also occur as side effects of Parkinson's medicines. Those other symptoms would fall into the so-called non-motor category. The non-motor is basically things that don't involve movement so much. More typical ones are anxiety and depression, which can be part of a Parkinson's characteristic.

Those are common in the population. They're not unique to Parkinson's folks, but Parkinson's folks can have anxiety and depression as a non-motor symptom of their illness. Cognitive issues as well. Just like a Parkinson's patient can have slowness of movement, they can also, in a sense, have some slowness of thinking that might occur later on, so it can manifest itself as some thinking issues or cognitive issues. As a side effect of medications, sometimes people can have hallucinations, so that's another non-motor symptom where people are seeing things that aren't there, generally related to their medicine.

They can have sleep issues, so fragmentation of sleep, waking up several times at night. Maybe they feel uncomfortable because their medicine's worn off. In addition, they can have another kind of sleep problem where they act out their dreams. It's given a term called sleep behavior disorder, but people basically are yelling and screaming in their sleep, acting out their dreams, and that can be a problem for them and for their bed partner.

Then there are so-called autonomic problems, part of the digestive system interference. Constipation is pretty common as a non-motor symptom in Parkinson's disease. Some urinary dysfunction, urinary problems, control, sexual function can be impacted, particularly erectile dysfunction, perhaps as a side effect of medicine. And another non-motor problem that appears in Parkinson's is a decreased sense of smell, so basically foods don't taste as good because you can't smell your food quite as well.

Dr. Christina Ketron 00:31:02
All right.

Dr. Burton Scott 00:31:03
I would say that many of these non-motor symptoms are very bothersome to patients, but they're also very treatable. A lot of what we try to do is to treat the ones that we can because that improves quality of life. The non-motor stuff is important to patients, it's treatable. The motor part of Parkinson's disease is important to patients and also treatable.

Dr. Christina Ketron 00:31:30
We want to focus on the non-motor symptoms as well when our patients are in clinic. It kind of goes along with the whole health perspective of the VA, so it all blends really well together.

Dr. Morgan, we briefly spoke about exercise already. Are there any neuroprotective research programs available specifically for veterans to participate in as it relates to exercise in Parkinson's?

Dr. John Morgan 00:32:00
There have been some trials that have been ongoing. I think there are some around the country. I don't know the specifics of those. Maybe my panel members do. But there was data that came from the Parkinson's Foundation, Parkinson's Outcomes Project, that indicated that folks who exercised regularly have better outcomes with their Parkinson's disease. And there's lots of animal data to support that as well. Hence, you can make rats or mice parkinsonian and put them on a treadmill, and those that exercise versus those that don't have neuroprotection of their nerve cells that have dopamine in them in the brain, the ones that die in Parkinson's disease. There's animal data that supports it, there's human observational data that supports it, and there's research that is ongoing trying to prove neuroprotection with exercise in Parkinson's.

Of other trials folks can do, I think there's a couple that I should highlight that are ongoing now that are exciting outside of exercise. One is a medication called exenatide, which is being studied at multiple centers, and veterans that are untreated and newly diagnosed are eligible to do it on the academic side of many of these centers or the VA centers. But exenatide injection once a week over about a year to see how folks do and to slow Parkinson's down. And that's the holy grail that Dr. Scott was mentioning, is that we don't have any medication or therapy which definitely slows down Parkinson's. We treat the symptoms currently.

Another one that is exciting, I think, and will hopefully go further with phase two, phase three trials is immunization against one of the proteins that goes awry that Dr. Hinson mentioned called alpha-synuclein. The SNCA gene mutation she mentioned is the alpha-synuclein gene. And they're looking at immunizing patients to see if it can attack the bad, clumpy form of alpha-synuclein and help slow down the disease progression in patients, and maybe if we even do it earlier in the disease course before patients present with motor symptoms, we may even slow it down more. We'll see.

Dr. Christina Ketron 00:34:19
Lots of exciting research. Dr. Hinson, there are other treatment options for advanced Parkinson's, such as DBS that has briefly been mentioned, and Duopa. Also briefly touch on that, as well as how our veteran population specifically can access care when they have Parkinson's disease through the VA. There's a PADRECC and Center of Excellence focus that we have whenever we're encouraging our veterans with Parkinson's to connect with both of those facilities.

Dr. Vanessa Hinson 00:34:55
Yeah, that's right. I think it's so important as a patient, for those folks who are watching, to really ask to be seen by a specialist. If you have Parkinson's disease, you want to see a neurologist and you want to see a neurologist who specializes in Parkinson's disease. Those folks are called movement disorder specialists. And if there is not such a specialist at your local VA, that's okay. We can connect you as your primary local providers, either with one of those Centers of Excellence for the VA that Dr. Ketron was mentioning that are called PADRECCs, or with what we call a VA consortium center, which there are many more of.

There are only six Centers of Excellence in the whole country, but there are many more regional and local facilities that are consortium centers. That means they work with the Centers of Excellence. They have Parkinson's specialists there. How do you connect with these folks? You can either travel, which is fine. The VA pays your travel pay, or you can use the VVC VA telemedicine, which works really well. So the way that works is when you make your appointment, you ask to be seen what we call virtually, telemedicine-wise, and they send a link to your email, which you will click on and activate your video like you're doing it now, very similar to a Zoom call, and you will be connected with a Parkinson's specialist at either the PADRECC or the VA consortium center or at a nearby VA, who can really help you out. And while that is important early on already, it becomes even more important as we're talking now.

That's the other part of your question, Dr. Ketron, about advanced therapies. It becomes really difficult in the advancing stages of Parkinson's to get these medicines right. There's over 20 to choose from, which is good, but you have to know as a doctor how to manipulate them. And as a patient, many of you may know, many of you take medicine every two hours, every three hours. It's a very delicate balance. But as we enter that stage where some patients have to take medicine every two or three hours, what we also see is that the reason for doing that is that the medicine does not last from one dose to the next. So there are these off periods where people are very slow, tremulous, and tend to fall more, have freezing of gait where they start a step and can't take a step forward. Then a moment later, they might have these involuntary movements that Dr. Morgan described, the dyskinesias, which are not nice to experience either, which is an expression of almost too much medicine in the system.

Dr. Vanessa Hinson 00:37:22
So we're going from low to high and we yo-yo like that all day long, and that's just not a good stage to be in, which is when you really want to be seen by a specialist who has access to advanced therapies such as, you mentioned, the Duopa pump, which is an infusion system where a gel form of the carbidopa-levodopa-Sinemet medication gets infused directly into a medication port into your gut. So what does that do? We can program a pump to deliver that gel continuously during the waking hours at a very low rate. So we avoid any low time and any highs, and you don't have to take medicine every two to three hours. That's a very reliable way of getting continuous medicine to a Parkinson's patient.

Now, some patients say, that sounds great, but I don't want to carry a pump around at all times, and I understand that, and that makes total sense. These folks might be more interested in a surgical approach at the brain level, such as deep brain stimulation. The advanced Parkinson's centers that I was mentioning are capable of doing such therapies together with our colleagues in neurosurgery or refer you to a university center where those therapies are done. Essentially, that deep brain stimulator is a brain pacemaker, if you want. Electrodes are being inserted into the areas of the brain that are responsible for the Parkinson's symptoms, and these electrodes get connected to wires under your skin. This is not visible. They get tunneled under the skin and connected to a battery package that sits where heart pacemakers sit, right under your collarbone in a muscle pocket. So that stimulator kind of overrides the abnormal brain activity and can alleviate many of the symptoms of advanced Parkinson's disease, such as the yo-yoing and advanced tremors. They're very helpful, but really, you have to trust an expert with those.

Dr. Christina Ketron 00:39:16
There are options for our patients and specifically our veteran population. We're going to be speaking about those throughout the expert panels today that you'll be hearing from. And there are many other resources, such as the Aware in Care Kit that is available through the Parkinson's Foundation. Each panelist here today, Dr. Morgan, Dr. Scott, and Dr. Hinson, all want you to come prepared for your appointments when you see them and the many other physicians that are available to you as veterans. Make sure that you write down your questions. That's what we like whenever you come in to see us, that you know what you want to ask. Having a list in front of you can be very helpful. Thank you so much to our panelists today. I enjoyed this myself, and thank you so much for coming and sharing your expertise with us.

We're going to now take some questions from our live web audience. Please continue submitting your questions by clicking on the Q&A icon on the bottom of your Zoom viewing panel. Thank you so much.

Dr. John Morgan 00:40:19
Thank you.

Dr. Burton Scott 00:40:20
Thanks.

Amanda Janicke 00:40:26
Hi everyone, and welcome again to today's program. My name is Amanda Janicke, and I'm a Parkinson's disease information specialist at the Parkinson's Foundation. I will be moderating our live Q&A sessions today. If you haven't already, please continue submitting your questions via the Q&A icon at the bottom of your Zoom viewing panel. We will do our best to address as many questions as we can.

Dr. Hinson, this first question is for you. I know you touched on exposure to Agent Orange and what causes Parkinson's, but we've had a lot of questions about this topic. Can you tell us a bit more about what causes Vietnam vets to develop Parkinson's disease at a higher rate than the general population? And can you speak to any connection between head injury or concussion and Parkinson's? And are there any other chemicals, in addition to Agent Orange, that are linked to PD?

Dr. Vanessa Hinson 00:41:29
Those are all so relevant for our veteran population. I'm glad you're touching back up on that. The issue is, why do we believe at all that any toxins can cause Parkinson's, right? In the panel discussion that we just had, we mentioned several times that there is a protein that clumps up in the brain of those affected with Parkinson's disease called alpha-synuclein. And the question is, why does that protein clump up? We all actually have that alpha-synuclein protein around our brains, and it behaves quite well. But then it stops behaving, and it forms these clumps that the brain just can't handle, and those clumps kill brain cells. We believe that exposure to toxins such as those three toxins in Agent Orange can promote that cascade of protein clumping, the brain cells unable to get rid of them, and so on and so forth. It's cell damage that toxins can cause, and animal studies have proven that over and over.

But it's not only Agent Orange. For example, veterans who were stationed at Camp Lejeune in North Carolina, we know had exposure to a different form of neurotoxin from the well water, the water system at Camp Lejeune, and the VA has recognized that also as causing Parkinson's disease. And so one can file a claim based on Camp Lejeune toxic water exposure and Parkinson's disease as well.

You mentioned head injury. That is another important factor. Now, we're not talking about me not looking out and running into the door of my bedroom or something like that, but an actual concussion and especially repeated concussions. And if we think about veterans, blast injury that affected one's head certainly is known as well to set off these toxic cascades at the brain levels that change proteins and make them clump up and kill some brain cells. So those are very relevant to bring up with your VA neurologist as well if you had one of those.

Amanda Janicke 00:43:39
Thank you. Thank you, Dr. Hinson. Dr. Morgan, this next question is for you. Is Parkinson's preventable? Can you speak more about the effectiveness of exercise as a way to manage Parkinson's symptoms and how much exercise do you recommend to your patients, and what types of exercise seem to be most effective?

Dr. John Morgan 00:44:02
Wow. Is Parkinson's preventable? I would say that there are certain things that you can do if you don't have Parkinson's that may lower your risk, and most people don't like them. Doctors definitely don't like them. So, die young, because aging is one of the biggest risk factors for Parkinson's disease. Most people don't want to choose that one. Smoke. Smokers have characteristically had, in numerous studies, lower risk of Parkinson's disease. Now, don't go to your VA doctor and say they told me to smoke to stop Parkinson's coming on because that'll get me in trouble, but that's just one of the associations.

How much coffee you drink has been associated with lower Parkinson's risk. Exercising and keeping in good shape. Less milk intake in men has been shown to be lowering your risk, or at least it's a higher risk if you drink a lot of milk. So again, that gets at the pesticides in the environment, that kind of thing that may be linked there. But yeah, preventing Parkinson's disease, if you can live as healthy a lifestyle as you can, avoid head trauma as we talked about, exposure to toxins in your diet. Another interesting thing was bowel movement frequency. The more you go to the restroom, the lower your Parkinson's risk. Why could that be? Well, you're having less exposure perhaps to toxins that are in your food or your diet, and you're passing them through faster. So I have a pretty funny slide about this that I give talks on, but poop regularly is good advice.

Amanda Janicke 00:45:43
Thank you. Thank you. Next question is for Dr. Scott. I'm concerned about side effects of treatment and have been delaying starting medication. I'm afraid my meds will stop working if I start them too soon. Is that true?

Dr. Burton Scott 00:46:00
Regarding side effects of Parkinson's medicines, all medicines have side effects. And it is important and useful to discuss potential side effects of medicines with patients when you're getting ready to start a medicine or recommend starting a medicine. For younger patients, younger meaning 30s, 40s, maybe 50s, one might start a type of medicine called amantadine, for example. Some folks like to use it, some folks don't.

Amantadine is an old flu medicine that helps with Parkinson's symptoms, but it has side effects that can be limiting for folks, like constipation, dry mouth, blurry vision, sexual dysfunction. If those side effects are concerning for a patient, then that's not a medicine that we'd want to start. So a conversation about side effects is important. The gold standard medicine that Dr. Morgan mentioned, the carbidopa-levodopa, is the strongest, most effective medicine for treating Parkinson's disease symptoms, but it has its own collection of side effects, all of which can be approached and looked for and monitored for. And to a certain extent, dosage of medicines can be adjusted. Things can be done to try to limit side effects. It's through a dialogue with your physician that you first of all tell the doctor what side effects you're having when they ask you, and then approaches are done to try to minimize those side effects.

All medicines have side effects, but we can do something about many of them.

Amanda Janicke 00:47:59
Okay, and Dr. Scott, is there a treatment specifically for dyskinesia related to taking medication?

Dr. Burton Scott 00:48:05
Dyskinesia is those writhing, twisting movements that kind of look like Michael J. Fox testifying in Congress, or if he does that, writhing, twisting movements. That's a side effect of the carbidopa-levodopa medicine, that very important Parkinson's medicine. Yeah, that could be approached by different ways. One way might be to take a smaller dose of medicine more frequently. Another way might be to reduce some form of the carbidopa-levodopa and maybe add in a very slow-acting one like Rytary. Another way to approach that, amantadine might help, and surgery can help.

Dr. Christina Ketron 00:48:46
Okay.

Amanda Janicke 00:48:54
Thank you. Dr. Hinson, this next question is for you. Can you tell us more about the stem cell research that's been happening, and when, in your opinion, can we expect a cure for Parkinson's?

Dr. Vanessa Hinson 00:49:09
Sure, I got that up my sleeve right here. Let me get it out.

But yeah, we get that question a lot. It's a fascinating concept to think that we can regrow the cells that the Parkinson's brain has lost. What has held that piece of science back a little bit is the following issue. We have talked a lot among the experts here about the neurochemical called dopamine, which is so important for all of us to move and which is deficient in Parkinson's disease and causes many of the symptoms. The thought behind stem cells is, can we artificially essentially make cells that then make dopamine?

The issue is, though, that we have found that many other important symptoms of Parkinson's are not caused by dopamine loss but are caused by a loss of different neurochemicals. For example, the non-motor symptoms that Dr. Scott explained, for example, mood changes, cognitive changes, bowel changes, sexual dysfunction, and so on and so forth, usually are not just caused by dopamine loss, but, for example, by loss of acetylcholine or other fancy names for these chemicals. There's about four or five that are deficient in Parkinson's disease. So just replacing one doesn't take care of everything. We're still left with a deficiency in four or five others. That's problem number one.

Problem number two, let's suppose we replenish some new cells that are growing from the stem cell therapy. If the toxic cascade of cell death keeps going on, those new cells will also die. We said that maybe from some exposure, Agent Orange or other exposure, there is a neurotoxicity going on at the brain level and protein clumps up and destroys brain cells. Even the new cells could be destroyed. That's why I think that research hasn't advanced as quickly as we wanted it, which is why Dr. Morgan was bringing up other ways of our brain to potentially fight Parkinson's.

One way that we're intrigued about, because we're so interested in the protein, is, well, if the issue is it's clumping up, can we do something about it not clumping up? That's where a lot of the exciting science is going right now, to prevent the clumping or, with the vaccine trials that Dr. Morgan mentioned, to get rid of the clumped-up protein.

Amanda Janicke 00:51:35
Okay, thank you. The next question is for Dr. Morgan. Pain associated with Parkinson's never seems to be discussed. Can you talk more about that?

Dr. John Morgan 00:51:51
Well, folks can have pain for lots of reasons as we age. Number one, number two, and number three is arthritis. You get stove up in the morning and you can't move very well, and your knees hurt and your back hurts, and those kind of issues certainly can play a role in pain in general for a lot of patients. But imagine having a 100-pound suit on you that slows you down as well — Parkinson's disease — where you can't move as well as you used to or where it makes you stiff on one side more than the other. That can certainly cause pain.

Just this past week, I had a patient that had a very significant pain syndrome related to their Parkinson's, and a lot of folks may not recognize it and think it's orthopedic or other issues. This patient came in and he complained of significant band-like pain that was around both knees. And I said, "Well, when does it occur, sir?" And he said, "Well, I haven't really noticed it," and we talked about it further. It happened as an off phenomenon. As levodopa wears off in your body and it's time for your next dose, you can have these pain kind of symptoms.

I treated him with a longer-acting form of levodopa, and it changed his entire picture. Pain is often very addressable if it's dopamine responsive by keeping folks on more. But some folks have pain with Parkinson's that is not responsive to levodopa or other drugs, and you try to treat them with the pain clinic and other medications, and it can be difficult. But yeah, it is a problem that occurs.

Amanda Janicke 00:53:30
Okay, thank you.

This next question is for Dr. Scott. Is there a blood or urine test that will test the level of dopamine in a patient, and how can you tell how much dopamine has been lost in someone with Parkinson's?

Dr. Burton Scott 00:53:48
There is not a commercially available test that I know of that's easily available. Certainly in research settings, one could test dopamine levels, but the way that we test really in the clinic is how the patient is doing and how the patient's symptoms are doing. We'll ask a lot of questions in clinic about how smooth their day is, if they're having ups and downs in their functioning, and then infer from that whether they've got the right amount of medicine, if they're taking the right amount of medicine on the right kind of schedule. A lot of what I think we do is adjusting medications to try to make things smooth through the day.

There is an imaging study that is available called a DaTscan that can be used to measure how much of a protein is present in the brain that takes dopamine up into brain cells, and that can be a reflection of how much dopamine is in the brain. But that's about a $3,000 test, which doesn't change how we treat Parkinson's. It may help in some situations as far as diagnosis, but in general we don't need to use that expensive imaging study.

Amanda Janicke 00:55:19
Okay.

Thank you. Thank you again to our experts. If you have a question that was not addressed during the Q&A, we will be answering more questions throughout today's program. And you can also contact our Parkinson's Foundation toll-free Helpline Monday through Friday with Parkinson-related questions at 1-800-4PD-INFO or email Helpline@Parkinson.org.

Now, we are going to begin our second panel discussion focusing on mental health challenges and treatment options for veterans with Parkinson's disease.

Dr. Christina Ketron 00:56:22
Good morning, everyone. Welcome back. And welcome now to our mental health panel discussion. First, I would like to introduce our next panelist, Dr. Jessica Broadway.

Dr. Broadway is a geriatric psychiatrist at the Ralph H. Johnson VA Medical Center in the divisions of geriatrics and extended care. In addition to providing specialty clinical services, she also is the co-chair of the facility's dementia committee. Her primary clinical and research interest is in the treatment of behavioral disturbances in persons with dementia.

Dr. Broadway, welcome, and thank you for being here today.

Dr. Jessica Broadway 00:56:57
I'm going to talk to you about mental health concerns in Parkinson's disease today. The three most common mental health, or non-motor symptoms, neuropsychiatric symptoms that we usually see in Parkinson's disease are cognitive decline, which can occur in up to 80% of patients with Parkinson's disease, depression, which occurs in up to 50% of patients with Parkinson's disease, and psychosis, which occurs in up to 60% of patients with Parkinson's disease. First off, a little bit about cognitive decline.

The cognitive decline that we see in Parkinson's disease may affect multiple different areas of cognition, including executive function, which is the part of our brain that helps with critical thinking, attention, memory, visuospatial, sort of how we navigate in the world, as well as our language functions, ability to speak and understand other people speaking to us. Up to 80% of people with Parkinson's disease over the course of the illness will develop cognitive impairments, as I said earlier.

And actually, 10 to 20% of newly diagnosed patients actually have some level of cognitive impairment. The most common treatments that we use to treat cognitive decline associated with Parkinson's disease are the same medications that we use for Alzheimer's disease, primarily the cholinesterase inhibitors. The only cholinesterase inhibitor that's actually FDA approved for Parkinson's disease is rivastigmine or Exelon. This medication is available as a pill or a patch formulation.

However, others — and I said that it's the only one that's been studied, and actually, that's not correct. The other ones have been studied but have not been FDA approved. Those include donepezil and galantamine, which are also both available as pills. These medications, like other medications, are not without potential side effects, and the most common side effects that we see are related to the GI tract. So nausea, diarrhea, loss of appetite, and sometimes weight loss. There are other potential side effects, such as stomach bleeds, slowing of heart rate, and some other things.

Dr. Jessica Broadway 00:59:26
The second common symptom that we see is depression, which occurs in up to 50% of patients with Parkinson's disease at some point in the illness. This includes patients that may suffer with a minor or sub-syndromal depression and those who would meet criteria for major depression.

There are some differences that we see between depression in Parkinson's patients versus depression in non-Parkinson's patients, including higher rates of anxiety associated with depression, and also less guilt and self-reproach. One thing that's important to note is that some of the symptoms with depression can be similar to the non-motor fluctuations that you can see in Parkinson's disease, which can include low energy, fatigue, apathy, low mood and anxiety.

There are a number of scales that have been shown to be useful to kind of help tease that out.

Treatments are available for depression. Psychotherapy is very effective, and particularly cognitive behavioral therapy, and I believe that Dr. Mundy is going to talk a little bit more about that later. Medications that are used to treat depression have also been shown to be effective. Some of them have been shown to be effective for Parkinson's disease, notably venlafaxine, paroxetine, citalopram, and nortriptyline, as well as pramipexole.

And then electroconvulsive therapy has also been shown to be a highly effective treatment for depression, especially when it's not responded to other medications or the medications haven't been tolerated. An added benefit that we see with electroconvulsive therapy is at least temporary improvement in the motor symptoms of Parkinson's disease. We usually reserve electroconvulsive therapy for severe cases or those who have failed two prior sufficient trials with sufficient dosing of antidepressants.

Lastly, psychosis, which is another very common symptom occurring in up to 60% of patients. The most commonly reported symptom is visual hallucinations. People oftentimes will talk about seeing human figures, people in the living room or just faces, or perhaps small animals. It is not uncommon to have auditory, or hearing things; feeling things, having weird sensations on your body; and also smelling things that are not there.

Dr. Jessica Broadway 01:02:11
Oftentimes, these hallucinations can be very disturbing and can increase the disease burden and caregiver burden. Just a couple other examples of different types of hallucinations or delusions: you can have misperceptions where you see one object but think that it's another. You can actually have actual objects, such as patterns in wallpaper or trees, that trigger a visual hallucination or misinterpretation of faces or animals.

You can have a sense that something is moving through your peripheral vision, but then when you actually look to see it more carefully, it's not there. There's something called a presence hallucination, of actually feeling somebody that's in the room with you, but you can't see them or hear them.

Sometimes you can have very vivid and complex hallucinations, like I said, seeing people sitting in the living room that are not there or hearing them. There's also something we refer to as a pseudo-hallucination, which I think I've seen very commonly, particularly in Parkinson's disease veterans who have post-traumatic stress disorder, which is very sort of intrusive and vivid visual images in their mind's eye. They may not be seeing it with their eyeballs, but in their mind's eye, they're seeing it in their head, and it's very vivid.

Anyway, these are just a couple of samples of different types of hallucinations and delusions.

The way that we typically treat psychosis in Parkinson's disease, the first step is going to be to try to lower the dopaminergic drugs, the Sinemet or carbidopa-levodopa that we use to treat Parkinson's disease, if that lowering can be tolerated by the patient. The second step, if that is not helpful, is to add on a cholinesterase inhibitor, the ones that we use for memory, like donepezil or rivastigmine. And then, if that is not helpful sufficiently, there is a drug called pimavanserin, or market name is Nuplazid.

This is a drug that was FDA approved specifically for psychotic symptoms in Parkinson's disease. This drug usually takes about four to six weeks to work, so it's not going to get a response right away, but it has been shown to be very effective. Lastly, we would consider using the atypical antipsychotic drugs. The one that has the best evidence for efficacy is clozapine, but this drug requires weekly blood work due to a risk of suppressing white blood cells and consequent infection.

The other drug, and in fact the one that's most commonly used, is quetiapine, which is an atypical antipsychotic, and it does not require blood monitoring. There are some others, including aripiprazole and olanzapine, but most of the antipsychotics overall do risk worsening the motor symptoms, and they also have lots of other side effects, which is why the first three steps that I listed are the ideal first three steps.

Dr. Christina Ketron 01:05:27
Let's go over a few questions that were submitted by our veterans prior to the conference today. The first one being, let's talk about Namenda. You mentioned a couple of different drugs that we can use for cognitive impairment, such as Aricept, but often we also use a drug called Namenda or memantine. Can you tell us a little bit about that drug?

Dr. Jessica Broadway 01:05:53
Sure.

Memantine has a little bit more mixed results. There have been some studies that have shown that it's helpful for certain areas of cognitive functioning, such as attention, as well as your speed of thinking or processing speed, as well as executive function or critical thinking. There have been other studies that show that it improves overall level of functioning, maybe your ability to take care of yourself, reducing other perhaps behavioral symptoms that we can sometimes see with cognitive impairment, but not necessarily having a robust effect on the cognition itself. And then there have been some studies that have just not shown a difference with memantine. But almost all of the studies do show that it's really well tolerated. So I think it's definitely a medication that we like to keep in our toolbox.

Dr. Christina Ketron 01:06:49
So if a veteran has a question that's with us today, they can post that in the Q&A, and we can address that further. Otherwise, you would speak with your primary movement disorder specialist or neurologist about that further. So then, what should we do to prepare for a possibility of cognitive decline in a patient with Parkinson's disease?

Dr. Jessica Broadway 01:07:11
That's a really good question. I think knowing that this is going to occur in up to 80% of people means that every patient should probably be prepared for this at some point. The best things to do while somebody still has pretty intact cognition is to make sure that your papers are in order, that you've got a healthcare power of attorney and a durable power of attorney for other legal, financial matters. Discussing your goals of care or your living will with your loved ones, your healthcare power of attorney, and your physician or provider is also really important.

And then I think it's also important to think about long-term care planning. What are your goals if it gets to the point where your motor symptoms are such that you can't take care of yourself in the house anymore? Who can assist you, or where would you want to go? Those sorts of things.

Dr. Christina Ketron 01:08:08
So what about medications specifically for depression? You mentioned a few of those. Do any of those work better than others?

Dr. Jessica Broadway 01:08:16
The one that has the most robust evidence for efficacy is probably venlafaxine. That was shown in a randomized controlled trial with Parkinson's disease patients to have significant improvement in depressive symptoms. The evidence for some of the other ones that I mentioned has been mixed, with some positive studies and some negative studies. And yeah, I think venlafaxine is probably the most effective, but in practice, the SSRI-type medications, such as sertraline and citalopram, paroxetine, are used very commonly.

Dr. Christina Ketron 01:08:56
We typically prescribe sertraline because of the low side effect profile. Even if you're on that medication, we don't want you to rush out and call your provider and say, this is not FDA approved for Parkinson's. We do use many different types of medication. These are the ones that we're pointing out today that we know have had clinical trials for Parkinson's patients.

Specifically, I want to talk about rasagiline. It's a medication that we often use either in monotherapy or as an adjuvant to carbidopa-levodopa. Often, there's confusion about whether or not that can be added with an antidepressant. What would you say if someone asked you that question?

Dr. Jessica Broadway 01:09:38
There was definitely a lot of hesitancy and concern about that combination of drugs in the beginning because there's the concern for possible serotonin syndrome. But actually, the ADAGIO study, which was published in 2015, looked at the combination of rasagiline and an antidepressant and found that it was very well tolerated, and they didn't really have any problems with serotonin syndrome. In fact, the two drugs together worked great to improve quality of life and slow down, not only reduce the risk of developing depression, but also reduce the risk of cognitive decline and other decline over time.

It's still something to be aware of, the potential risk for serotonin syndrome. Overall, we try to use the lower doses of the SSRIs or antidepressants when somebody's on rasagiline, but absolutely, they can be safely combined in most patients.

Dr. Christina Ketron 01:10:40
Great. Just a brief mention about antipsychotics. I know you did a very nice overview about that. If someone should be prescribed an antipsychotic, are there any ones in particular that should be avoided in a patient with Parkinson's disease?

Dr. Jessica Broadway 01:10:56
The ones that have been shown to be the most detrimental to patients with Parkinson's disease are the typical antipsychotics. These are the older medications like Thorazine or haloperidol or Prolixin. Some of those older drugs are particularly dangerous, mostly because they increase the motor symptoms. They make Parkinson's patients more rigid. Some of the newer drugs, such as risperidone and even olanzapine, have also been shown to increase the risk of tremor and rigidity, so antipsychotics should definitely be used with caution.

Dr. Christina Ketron 01:11:38
True. Great. Thank you so much, Dr. Broadway. We appreciate all your expertise today.

Dr. Jessica Broadway 01:11:44
No problem. Thank you so much. Appreciate the opportunity.

Dr. Christina Ketron 01:11:47
Absolutely. Now I would like to introduce Dr. Travis Turner. Dr. Turner is an assistant professor and director of the neuropsychology division at the Medical University of South Carolina in Charleston. Dr. Turner is also senior clinical director of movement disorders at VeraSci. His clinical interests include neuropsychological evaluations and focused interventions for patients with Parkinson's disease and related disorders. Thank you so much, Dr. Turner, for being with us today.

Dr. Travis Turner 01:12:15
Absolutely. Thank you, Dr. Ketron. I'm just going to come right out and say it. Parkinson's disease is very disrespectful to our nation's veterans. It doesn't thank them for their service by leaving them alone. In fact, a number of conditions that veterans are more likely to experience, such as traumatic events, significant head injury, combat deployment, and Agent Orange exposure, actually place them at greater risk of developing Parkinson's.

For myself, having spent a number of years working as a neuropsychologist in the VA health system, I have observed some unique characteristics, I think, in the way that PD presents in veterans. And I think the first kind of general one is that veterans are often less likely to seek medical help for subtle changes in their health. This means that when we see them, the disease is often a bit further progressed before it is formally diagnosed and treated. Unfortunately, that means that there'll be a more extended period of diminished quality of life before we can get the help to them. But I will say that certainly over the last 10 years, and even more in the last five years, with improving quality of care through the VA, access to specialized medical help and building patient trust, I think this is becoming less of an issue.

But from a mental health standpoint, we know that, as Dr. Broadway was just saying, anxiety and mood disturbances are really very common in people with PD and often present prior to the motor symptoms. Veterans, particularly those who have experienced combat, have increased rates of post-traumatic stress disorder, or PTSD. And a big part of PTSD is avoidance, meaning avoidance of crowds and public places and things like that. This can further cause a delay of diagnosis and delivery of treatment for both motor and non-motor symptoms.

And I think, as probably anyone who has Parkinson's disease and tremor can attest, stress and performance anxiety makes that tremor worse. This can end up having something of a snowballing effect, where people have a tremor, they become self-conscious about it, then they feel more anxious, more tremor, and so on. For veterans who are already struggling with avoidance, going into settings that are going to make that anxiety worse is particularly challenging. And what are these settings? Well, they're oftentimes the large medical centers where we have our movement disorder clinics. That can be another challenge to face, and going out into the community-based Parkinson's support groups is also going to be harder, for sure, for someone with PTSD.

Dr. Travis Turner 01:15:23
That's the avoidance thing, and another thing that comes up in veterans with Parkinson's is the PTSD-related nightmares. These can be related to the actual traumatic event that was experienced, but not necessarily. When we're treating folks with Parkinson's, we're always interested in dream enactment. And it can be pretty challenging to determine whether the dream enactment that we're hearing about, meaning thrashing, calling out, kicking, and so forth, represents PTSD, severe nightmare or the REM sleep behavior disorder that we associate with Parkinson's.

For me, as a general rule, if a veteran is acting out dreams that don't involve that fight-or-flight component, that don't have that type of anxiety or intensity, it's more likely to be Parkinson's related, whereas if it's exclusively fight-flight, possibly not REM sleep behavior disorder. This distinction isn't just academic. It is actually important. Neurologists who are seeing someone who's earlier on in their disease, where motor symptoms may be really mild and unclear as to whether it's parkinsonism or not, will look to dream enactment as a supportive feature to make that diagnosis.

Dr. Christina Ketron 01:16:51
Right.

Dr. Travis Turner 01:16:52
And then in terms of treatment too, if it is a PTSD-related nightmare that's severe, well, we're going to be looking to exposure-based therapy and maybe some antidepressants to try to manage that. Where, if it's the Parkinson's-related variant, we look to things like melatonin and clonazepam and sometimes other drugs.

As I mentioned earlier, individuals with PTSD and history of traumatic brain injury or TBI are at increased risk of developing Parkinson's. And there was actually a recent study that was based on like 900,000 veterans, about 170,000 or so of whom had Parkinson's. So very large study, large sample, found that having both PTSD and TBI exponentially increased the risk. It actually went up to a fourfold risk of developing Parkinson's.

So within the veteran community, we have increased prevalence of TBI with comorbid Parkinson's, and this can really compound the cognitive issues that come up and can sometimes get in the way of a diagnosis. If we're seeing a lot of cognitive issues at the same time as the parkinsonism symptoms, we might start to think about Lewy body disease.

If you kind of put it all together, veterans are at increased risk as a group for developing Parkinson's, and then those that do will have some additional obstacles to overcome oftentimes in terms of managing their condition. The good news is that the VA healthcare system actually has a number of outstanding programs, things that veterans have access to that the general community doesn't have access to, to get that help.

I really believe that the VA leads the world in treating post-traumatic stress disorder. They are right on the frontier of developing the effective psychotherapies and actually deploying them, getting them out there to the people who need it.

Dr. Christina Ketron 01:19:12
Right.

Dr. Travis Turner 01:19:13
They're also great with telemedicine, as you know. They've been doing telemedicine for 20-some years to these community-based clinics, the CBOCs. Even prior to COVID, they were delivering mental health services to veterans in their home. So they've got the experience, they've got the infrastructure, the know-how. That's really, really good. And then there's this other program that the VA has come up with where they have six specialty centers in the United States where they provide education and research and cutting-edge clinical care. These centers are called PADRECC Centers.
And they also allow veterans the opportunity to participate in not just the newest clinical trials of disease-modifying things and new symptomatic therapies, but also research that is specific to veterans.

I guess I would also mention, too, that the VA service connection for some veterans with Parkinson's disease can make a huge difference, especially for those who are at later stages of the illness where they are going to need more resources and support. I'd also, along those lines, encourage anyone to go to the Parkinson's Foundation website, where the VA-specific aspects are reviewed, because there's a lot of really good information there.

Dr. Christina Ketron 01:20:47
Specifically just thinking about the connection between TBI and PTSD, is there anything that we can do to sort of tease that out whenever they come into our clinic and they're having complaints of maybe tremor and slowness of gait? How do we tease that out whenever there are so many multifactorial issues going on with our veterans?

Dr. Travis Turner 01:21:08
I think it is important to really get a good psychiatric diagnosis on the PTSD component. One can certainly have Parkinson's disease and active, untreated post-traumatic stress disorder. And you would not want to just assume that, okay, we know people with Parkinson's are more likely to have anxiety and depressive conditions and things like that, that Dr. Broadway was mentioning, and not look into the PTSD component.

Or, to focus so much on the PTSD component that you don't see that there's maybe a neurologic basis for some of the symptoms. So I think, again, a strength of the VA system is the availability of that separate mental health service line from the neurology service and to make sure that the veteran gets a good diagnostic interview if there's any question there, especially if there's any history of trauma, or even if it hasn't been properly diagnosed or even identified, because it can often hide in the shadows for years and years.

Start asking, I think, about that avoidance component. That, to me, is really the hallmark. And if that avoidance has been going on for much longer than the motor symptoms have been there, that probably tells you that there's some PTSD, and at that point, try to find a way to work into a discussion about some things that a person might have experienced in their past.

I just want to thank all the veterans who are watching this for their service.

Dr. Christina Ketron 01:22:50
Right. Absolutely. Great. Thank you so much. Right now, I would like to introduce our last panelist in the mental health panel today. I'm going to introduce Dr. Katie Rider Mundey.

Dr. Mundey is a licensed psychologist here in the mental health clinic at Ralph H. Johnson VA Medical Center. She also serves as the Women's Health Champion and is responsible for creating and leading the facility's first-ever eating disorder treatment plan and team. Thank you so much, Dr. Rider Mundey, for being with us today.

Dr. Katie Rider Mundey 01:23:20
Thank you for having me today. I'm going to kind of dovetail off of what my colleagues have talked about and speak about Parkinson's disease and mental health treatment.

We've become quite clear over the past few minutes that people with Parkinson's disease have a higher risk for a lot of mental health concerns. But we don't want to leave you with the bad news. We also want to let you know that there are lots of effective treatment options available, and probably there's no better place to gain access to those than through the VA. So quickly, I want to note that in addition to depression and PTSD, individuals with Parkinson's disease are also at a lot higher risk of having generalized anxiety disorder.

It's entirely possible to have severe anxiety that impairs your functioning that doesn't necessarily have anything to do with PTSD or even depression. Evidence suggests that up to 40% of patients with Parkinson's disease experience clinically significant anxiety, which means anxiety that noticeably impairs their functioning. It gets in the way of them going to work or functioning at work or engaging with family members.

There's also a lot of interesting evidence to show that individuals with Parkinson's disease have much higher rates than the general population of comorbid anxiety and depression, which means anxiety and depression that happens together.

I also want to note quickly that having Parkinson's disease in and of itself, or really having any chronic illness, can lead to anxiety about the illness. When we have a chronic illness, we lose a lot. There's lots of grief involved. We maybe lose roles, identities that we once had that are no longer doable or achievable. And as a result, that can create a lot of anxiety. There's also the concerns about how this is impacting family members, how this is impacting our finances, if we're not going to be able to work as long as we once thought. There's the anxiety about stigma.

Are people going to notice when I'm shaking or when I'm having a tremor? Are they going to notice that I'm moving differently? And then sometimes we can develop hypervigilance to the Parkinson's disease symptoms. We become really, really attuned to these symptoms, which in turn can actually make anxiety about the symptoms worse.

There are three anxiety disorder diagnoses that are common among people with Parkinson's disease: generalized anxiety disorder. This is where you just worry a lot about everything, and it's very difficult to control the anxiety. There's panic disorder. This is when you have recurrent episodes of really significant anxiety that almost feels like you're having a heart attack. It's associated with lots of physiological symptoms: heart racing, trouble breathing, sweating, shaking, things like that. And then there's also the phobic disorders. These are the third most common. This is where you develop particular anxiety about one thing, and it's so intense it gets in the way of your functioning.

With Parkinson's disease patients, we know that the most common phobic disorder is social phobia. That is related to concerns about how people are going to view you or judge you based upon your physical symptoms.

Dr. Katie Rider Mundey 01:26:41
Here's the good news. The good news is that there are lots of effective treatments for all of these things: PTSD, anxiety and depression. And I'm going to quickly talk about what those options are. I also just want to note that, from the perspective of a veteran, you are in a great place to get the highest quality treatment for your mental health concerns. The VA is really the leader in evidence-based psychotherapy. Evidence-based psychotherapy is an umbrella term for a whole range of therapy options that research has shown to be highly effective for treating different conditions.

You're going to see a lot of these are based in cognitive behavioral therapy, but I'm very confident there's no better place to get health care for these conditions than through the VA. Cognitive behavioral therapy, or CBT for short, is the leading evidence-based treatment for anxiety. And it can take different avenues depending upon what your anxiety symptoms are. Some common approaches that you will hear would be CBT for anxiety and worry. This is more for generalized anxiety disorder. CBT for panic disorder, which is for those recurrent panic attacks. Exposure and response prevention, which has to do with managing obsessive-compulsive behaviors.

Some of the key elements of CBT: it's time-limited, as are all evidence-based treatments, meaning you know from the outset about how many sessions you're signing up for. It ranges depending upon the particular treatment, but usually eight to 16. It's structured, so every session is going to have a clear protocol, an agenda. You're going to remain focused on what the key issue is that you've selected to address.

In general, and this is very general, but for the sake of clarity and time, with regard to anxiety, key elements of CBT for anxiety involve altering behaviors that promote and maintain the anxiety. So this is kind of pushing back against things like avoidance, social withdrawal, social isolation. Also, a huge element of CBT in any form is challenging and changing anxiety-promoting cognitions.

So, overgeneralizing, going to worst-case scenarios, assuming that we know what other people are thinking about us. We help you identify those cognitions and learn skills to change them so that they no longer have such a negative impact on your mood and your behavior.

Dr. Katie Rider Mundey 01:29:16
PTSD. I believe one of my colleagues indicated this earlier, but it's so true that the VA has led the way in developing evidence-based therapies for PTSD. There are two key therapies for PTSD that have a huge evidence base and that we offer extensively in the VA setting. The first is Cognitive Processing Therapy, or CPT for short. We like our abbreviations in the VA. Twelve weekly sessions, 60 to 90 minutes each.

The focus of Cognitive Processing Therapy is looking at how the traumatic events have shaped your beliefs about self, other people and the world. And we call these stuck points. We develop kind of unhelpful thinking patterns as a result of our trauma exposure. And these unhelpful thinking patterns then lead to unhelpful behaviors and emotions. So we focus on helping you identify, challenge and change those. There's kind of an exposure element to the treatment too, where we do help you actually cognitively process the trauma memories.

Prolonged Exposure is our second evidence-based therapy for PTSD. It's about eight to 15 weekly sessions. These are a little longer typically, probably closer to 90 minutes each. Focus here is on helping veterans work through the trauma memories in a safe environment. We use very specific in-session and out-of-session exposure exercises to help you process trauma memories correctly because trauma memories tend to get stuck in an unhelpful way in our brain.

And then the other goal of Prolonged Exposure, or PE for short, is to help veterans really get re-engaged in the activities that they used to enjoy but are now avoiding as a result of trauma. Typically, PTSD comes with a lot of avoidance, avoiding trauma memories, avoiding certain places, stimuli, situations that remind us of the trauma, which can make your world really small and isolated. So we want to help you kind of re-expand, open back up to life and get re-engaged.

For depression, there are again two key evidence-based treatments: CBT for depression, or cognitive behavioral therapy for depression, and ACT, or acceptance and commitment therapy for depression. Both are highly effective and have a great evidence base. CBT for depression, 16 to 20 sessions, about an hour each, and these are all weekly therapies. This helps you address depression by challenging your depression-promoting cognitions. When people struggle with depression, they tend to develop pretty negative, unrealistic beliefs about themselves, about other people and about the future.

So we help you identify those unhelpful cognitions, challenge and change them, and then also really help you get back engaged in things that you used to enjoy but have maybe kind of removed yourself from as a result of the depression.

ACT for depression has a similar bent to it, a little shorter, potentially 10 to 16 weeks, but still 60 minutes each. There's a greater focus here on self-acceptance, improving relationships with others, and then there's still that component of re-engaging you in activities that maybe you once really enjoyed and were aligned with your values but have let go because of the depression.

Dr. Katie Rider Mundey 01:32:48
I wanted to note a few other relevant evidence-based therapies that could be useful for individuals with Parkinson's disease. If you're struggling with chronic pain as a result of your Parkinson's diagnosis or how Parkinson's is impacting your physical health, we have CBT for chronic pain, which is an evidence-based approach to help you learn how to develop non-pharmacological strategies for effectively managing chronic pain. And if your major issue is sleep, you're not sleeping, which we know is super common among those with Parkinson's disease, CBT for insomnia is a highly effective form of treatment for insomnia.

It's a lot shorter than some of these other ones we've talked about, five to six sessions, has nothing to do with medication and really helps you change thoughts and behaviors that are promoting ongoing sleep issues.

So, obviously, all these are available. Where do we go from here? The beauty of the VA is that it's an integrated healthcare system. The easiest way typically to get engaged with mental health treatment is going to be to speak with your primary care provider or your neurologist. If you say to either one of them, you know what, I think I have something going on or I just want to get a mental health evaluation, they can easily make that referral. Honestly, though, truly any provider in the VA system should be able to make that happen for you.

And that is it.

Amanda Janicke 01:34:29
Okay. Now we're going to take a few questions from our live web audience. The first question is for Dr. Broadway. Does cognitive decline occur suddenly or slowly over time, and are there strategies to postpone cognitive decline?

Dr. Jessica Broadway 01:34:49
That's a really good question. The cognitive decline that we see in Parkinson's disease does come on relatively slowly and kind of progress slowly over time. So it's not usually a sudden onset of memory problems. In fact, most people, when you ask them, well, when did this start? It's really hard for people to say, and they sort of can say, well, I know it's been worse for the past year, but maybe it was going on before that.

In terms of prevention, the best thing that we know of to prevent or to slow down cognitive decline, if we can, is cognitive reserve. And we can maintain healthy cognitive reserve with education, but also staying as mentally and physically and socially active as possible. So people who are engaged not just in reading, but also maybe playing games. Physical activity is important, but physical activity that challenges your brain. So not just walking on a treadmill, but learning to dance or taekwondo or something that requires a little bit more thought to go along with it. Those are some good strategies for trying to maintain cognition.

Amanda Janicke 01:36:14
Great, thank you. The next question is for Dr. Mundey. Other than medication, can you remind us what are the research-supported avenues for contending with cognitive decline?

Dr. Katie Rider Mundey 01:36:28
Another excellent question. There is a whole field called cognitive rehab that can be helpful for anybody that's struggling with cognitive decline as a result of Parkinson's but maybe wants to take a non-pharmacological approach.

It sounds fancy, but it's not that complicated, and it's many of the things Dr. Broadway was just talking about. Remaining as active in your life as possible, maintaining an exercise routine. Exercise is a great preventive mechanism.

Trying to engage in activities that make your brain work, you know? So doing puzzles, reading, learning new things. I love what Dr. Broadway said about, instead of just moving, learning how to dance or learning how to play tennis or pickleball or whatever. Social connection is huge. The research regarding all sorts of decline, cognitive and otherwise, and social connection couldn't really be stronger.

Although we have a tendency when we're struggling with any of these mental health conditions and Parkinson's to withdraw, as much as you can kind of push back against that and engage, and maybe that looks like engaging with other members of the Parkinson's community because you have a sense of camaraderie and understanding there. Being part of a church group or a Parkinson's group or an exercise group can be really key for preventing and slowing cognitive decline.

Amanda Janicke 01:38:01
Great. Dr. Turner, this next question is for you. What is the connection between Parkinson's and Lewy body dementia?

Dr. Travis Turner 01:38:12
Sure. The thing that Parkinson's disease and Lewy body dementia share in common is Lewy bodies, the accumulation of alpha-synuclein, the clustering and clumping of it, and the formation of Lewy bodies. In Parkinson's disease, our idiopathic typical Parkinson's disease, the Lewy bodies form more in the brainstem area where the substantia nigra is and those regions. And then with disease progression, they may spread out to other parts of the brain, the cortex, the outer surface of it.

In Lewy body dementia, the accumulation of these bad proteins happens more on the outer surface first, on the cortex, and that's why we see more problems with cognition in Lewy body disease early on, whereas that is something that may come up only later with progression of Parkinson's disease.

Amanda Janicke 01:39:14
Okay. Thank you. This next question is for Dr. Broadway. My husband's PD is managed well by day for the most part, but nights create major issues with freezing, cognitive issues and psychosis, which involves hearing yelling and sometimes thrashing in sleep and confusion. Is this decline at nights and early morning common?

Dr. Jessica Broadway 01:39:38
I believe that it is relatively common, especially if folks have more advanced disease and are starting to experience some of the cognitive decline. Certainly, most people have heard of sundowning with Alzheimer's-type cognitive impairment, but I certainly have heard that from my Parkinson's patients as well, that they also tend to have more rough nights.

I can't really speak to the motor symptoms being worse at night, but in terms of the psychosis and the cognition, the confusion being worse at night, that is definitely not uncommon.

Amanda Janicke 01:40:19
Okay. Thank you. This next question is for Dr. Mundey. Can one develop anxiety long before experiencing PD symptoms? And is there an order in which these two typically occur?

Dr. Katie Rider Mundey 01:40:35
It's a really good question. It's the chicken-or-the-egg scenario that comes up a lot in psychology. The simple answer is absolutely. You can experience any kind of mental health concern long before you have Parkinson's disease symptoms. And if you do, so if you already have a propensity for anxiety or depression, maybe you've been through trauma and so you have some PTSD symptoms, the likely trajectory is that the development of Parkinson's disease has a tendency to exacerbate or make those symptoms worse, making it all the more important to seek high-quality treatment.

But it can go the other way too, right? It can be that there are people who have never had any kind of mental health concern and then Parkinson's develops, and because some of the biological shifts, especially neurochemical shifts, can result in the new onset of these conditions. The research is kind of murky about which comes first, but the simple answer would be it could be either way.

Amanda Janicke 01:41:35
Okay. Thank you. Next question is for Dr. Turner. Can you speak to the phenomenon of addictions like gambling, alcoholism, et cetera, related to Parkinson's?

Dr. Travis Turner 01:41:48
Sure. We call these impulse control disorders. And they can come up in Parkinson's. It turns out that the increased risk that is related to Parkinson's is almost entirely due to the medications. These are the dopamine agonists. That's what we become concerned about. So medications like Mirapex, pramipexole, rotigotine, sometimes ropinirole. These medications definitely increase the risk of developing an impulse control disorder.

It is also true that some of us are a little more risky in life in general. And if there is cognitive decline that comes with Parkinson's, sometimes the brakes that we have on our behavior don't work as well, and people with Parkinson's may be more likely to kind of give in or be a little less conservative in managing these impulses with disease progression.

There is some evidence that even just the levodopa treatment, the standard carbidopa-levodopa, can increase the risk of these impulsive behaviors, but it's certainly not as strong as the risk that's associated with the dopamine agonist. So if these things are going on, it's important to tell your neurologist right away because we have certainly seen a number of folks who have really gone down a bad path and ended up in bad spots in relationships and financially because these things went unchecked. It is important to keep your finger on the pulse of these kinds of behaviors if they start to come up.

Amanda Janicke 01:43:34
Of course. Thank you. And we have a question for Dr. Broadway. How do people deal with PD when they are already diagnosed with a mental illness like bipolar?

Dr. Jessica Broadway 01:43:48
Wow. That's a really tough situation. I don't know that there is one right or wrong answer, but to echo what Dr. Turner said, I think one of the most important things to keep in mind with mental illness is that there is help available. I can't give that person a specific suggestion of how to deal with Parkinson's disease in the face of bipolar disorder pre-existing. But just being open and seeking help. There is help available. We have effective treatments, both pharmacological and non-pharmacological.

But you need to seek the help and let people know that you need help. I think support groups could be helpful, but individual therapy or group therapy, various medications. If I were faced with a similar situation, I think I would just really try to be as honest as possible about the struggles that I'm having so that I could get extra supports around me from not only providers in the medical system, but friends and family.

Amanda Janicke 01:45:04
Sure. Absolutely. Thank you. Thank you again to our experts for joining us today. And I just want to give another reminder to, of course, please feel welcome to call the Parkinson's Foundation Helpline with questions you have about Parkinson's at 1-800-4PD-INFO.

Now, we are going to take a quick five-minute stretch break led by Sydney Boggs from Beaufort Memorial's Delay the Disease program. Please feel free to step away from your computer or stay and participate. We'll see you back here in five minutes for our next panel discussion led by veterans who are living with Parkinson's.

Sydney Boggs 01:45:56
Today, what I'm going to do is just show you a glimpse of what we do in Delay the Disease. I'm going to start by getting you guys warmed up. We're going to do a few balance exercises, and then after that, we'll just do a few stretches.

To start, you can either do these in a chair or you can do them standing. We're going to do some high knees. If you're in a chair, you can kind of scoot to the edge of your chair and just lift your knees up. Or if you are standing up, you can get beside your chair, hold on to it if you need to, and you're going to lift those legs up as high as you can, keeping your core nice and tight. We're going to do this about 20 times, and I think I'm about on six. We're going to go seven, eight, nine, ten, eleven, twelve, thirteen, fourteen, fifteen, sixteen, seventeen, eighteen, nineteen, twenty.

Next, what we're going to do is you're going to have a seat, and we're going to do sitting jumping jacks. Just like you did in gym class, start by your side. When your arms go out, your feet go out. Same here. We're going to do about 15 of these too. Three, four, five, six, seven, eight, nine, ten, eleven, twelve, 13, 14 and 15.

Again, you can either do these next exercises sitting or standing. We're going to get our smaller joints warmed up. We're going to start with our wrists. All right. Hold your wrists out just like this, and we're going to turn in a circle. Just try to keep your wrists, not your whole arms. We're going to do a few rotations one way and then we'll switch to opposite directions and do them the other way. Same thing, about 10 or 12 on each side. All right, good.

Shake those arms out a little bit. Next, we're going to do big arm circles. You're going to go big arm circles forward. Try to get a full range of motion, making big circles with your arms. And we're going to go backwards, doing the same thing. Three, two and relax. All right.

If you're already seated, great. If you're not, go ahead and have a seat because we're going to warm up the ankles next. What you're going to do is put one foot out. And just like we did with the wrists, we're going to go with the ankle. We're going to start by going to the right, doing about 10 each side. Four, five, six, seven, eight, nine, 10. And then we'll switch to the left foot. Same thing, going to the right. Try to make an O with your toe. Four, five, six, seven, eight, nine, ten. Good.

Sydney Boggs 01:48:59
All right, from here, you're going to extend your leg. We're going to work from the hip. All right, so we're going to try to make big circles with our legs, trying to get as much as we can, going to the right. Four, five, six, seven, eight, nine and ten. Good. Switching legs. Same thing. One, two, three, four, five, six, seven, eight, nine and ten.

All right. For the next exercises, we're going to be focusing on balance. What I'm going to have you guys do is stand to the right of the chair. If you need help with your balance, it's fine. You can just hold onto the chair. Or if you don't, that's fine, too. But the goal here is we're going to go into a staggered stance. You're going to start with your right foot forward, your left foot behind. Have your feet about six to eight inches apart. Okay.

I don't know if you can see, but they're diagonal from each other. My left foot is behind me. What you're going to start doing is come forward on your toes and then rock back on your heels. We're going to do this about ten times, coming all the way up and then all the way back. Five. Six. Seven. Eight. Nine. And one more. That's ten.

Now we're going to do the same thing, but we're going to lead with our left. Our left foot is in front. Our right foot is behind us. Same thing. Six to eight inches apart. Staggered stance. Coming up on our toes and back on our heels for one, two, three, four, five, six, seven, eight, nine and ten.

All right, shake those legs out a little bit. All right, guys, that is all I have for you all today. I hope you enjoyed it. And thank you guys for having me.

Dr. Vanessa Hinson 01:51:37
I would like to welcome our three members of our veterans panel to really my favorite segment of the whole symposium. These three people have three things in common, I believe. Well, they're all veterans. They all have Parkinson's disease. And they're all kind enough to share their experiences with us today. Let me go with the introductions, just going around here. We have Eric Arrington from North Carolina. We have Ms. Lou Eisenbrandt from Kansas. And we have Jay Phillips, who to me is a local because I'm from South Carolina, just like he is. Welcome, everybody. Thank you again for joining us for this.

Let me get started with my first question, and that's going to go to Eric. Eric, when you first noticed that something was wrong, you were only 47 years old, and you told me that you were lifting weights like you do and your right arm just felt kind of weak, and something wasn't right. And then the doctor actually proceeded to tell you that you had Parkinson's disease. And I think your first thought was, no way, I don't have that. Can you tell us what went through your mind at that point?

Eric Arrington 01:52:49
Oh, it was a nightmare for me. But I was in pure denial. I thought it was a pinched nerve or something of that nature, hauling around on parachutes or rucksacks, 12-mile ruck marches, Air Assault School, something. It had to be something else.

And I felt like I wasn't going down like that. But I kept going to the gym trying to get back into proper shape, or what I consider proper shape. And then I kept seeing these signs that said, hey, come get your nerves checked out. I finally got the courage up to go to the hospital to get seen, and I felt like I had been ambushed. You know? The guy said, hey, you have Parkinson's, and I'm a movement specialist.

And then he proceeded to tell me that it is a degenerative disease that progresses as you get older. It would get worse. And on top of that, he said, hey, you're going to have to be chaptered out of the United States Army. I'm like, oh my God. There goes my chance of making O-6. So I told him to give me a little time to come to grips with it because it wasn't affecting my duties, nor was it affecting my ability to pass a PT test.

Dr. Vanessa Hinson 01:54:36
You were on active duty, a husband, a father. How did you manage?

Eric Arrington 01:54:44
I just found out as much as I could about Parkinson's and dug deep. I started preparing myself for the medical board. You know, I knew it was coming. My paperwork got lost. And once it caught up with me, believe it or not, I passed a medical board for the second time in my military career.

But after that, I just said, that's way too close. So a year later, I dropped my retirement paperwork. And what I did for my wife, I made sure she had everything that she needed and she understood about Parkinson's. And for my son, he was growing up towards the end of high school. I made sure he had opportunities to participate in different things he wanted to. And I made sure my disease did not have a negative impact on the family.

Dr. Vanessa Hinson 01:55:52
Thinking really through all the various angles, right? Yeah.

Thanks for sharing that. Coming to Jay here, looking back in the early 2000s, to kind of go to where your personal story started, you also noticed some changes, maybe one at the gym, but you lost your sense of smell early on, right? And you noticed that you were more constipated, your handwriting started changing, but you didn't think much of it. It was all kind of nonspecific. But then years later, your hand started shaking. You saw a neurologist. You got your diagnosis. You got your second opinion. You got your third opinion. You figured out which VA specializes in Parkinson's care.

So you really acted quickly. Why was that so important to you, to move quickly and to make sure that you actually got to see a specialist for this particular disease?

Jay Phillips 01:56:50
Well, the first diagnosis I had came from just a regular neurologist, not a movement disorder specialist.

He immediately started me on carbidopa-levodopa as a treatment. Of course, that's what we call the gold standard drug. But as I learned about three months after that, when I got a second opinion, it perhaps wasn't the best thing to have started me off on right away because my tremors were minimal and because of the possibility it has long-term side effects.

I joined a support group early on, and there I was exposed to a lot of other patients and I could see how complicated Parkinson's was, how complex a disease. And everybody is taking all these different medications and talking about new medications and exhibiting all of these different symptoms. And so I said, wow, I better get an expert here.

For me, the analogy, I was in accounting. And as an accountant, I focused on nonprofit accounting. If I tried to be a tax accountant and an auditor and a financial advisor and all kinds of accounting together, I would have done everything badly. Jack of all trades and master of none, as it were. And I felt the same way about Parkinson's specialists. I really wanted to see someone who knew what was going on with Parkinson's. So that was the key. I decided I better go in that direction. And then I did see a specialist at Georgetown, and he confirmed the diagnosis and we changed medications.

At the time, I lived around Washington, and the NIH, the National Institutes of Health, had a half-day free program they were offering for people to be diagnosed again by a team of people. And I went to that for a half day, and they confirmed again that the diagnosis was correct. So I felt much more comfortable once I knew I was getting the care that I really thought I needed.

Dr. Vanessa Hinson 01:58:34
That's really good to hear that you got that team assembled very quickly. And that year when you were diagnosed, 2010, actually coincided with the year that the VA officially recognized Parkinson's disease as a condition associated with the use of Agent Orange during the Vietnam War. And I think that is actually quite relevant to your personal history, right? You had your boots on the ground there, Jay.

Jay Phillips 01:58:58
I spent 21 months in Vietnam, most of that in the infantry in the field. So I was exposed to Agent Orange on numerous occasions, as well as other chemicals that were used around the bases. I think one of the things that was important for me right away with regard to the VA was I was a few years away from retirement. I thought I was going to retire in probably three or four years. But once I received my diagnosis of Parkinson's, I thought I needed to move that up, partly because of the symptoms I was having that affected my work. You mentioned constipation. I had a lot of daytime fatigue. My handwriting had gone to hell in a handcart, so taking notes in meetings was hard, and all of these things impacted my job performance.

But also, I wanted to enjoy life a little bit. I knew that the prognosis for Parkinson's was, typically in five to ten years or so, it begins to have some significant impact on your quality of life. And I wanted to have some time to enjoy things. So I moved my retirement date up a couple of years, and that did a couple of things. One is it cut down my income. So obviously getting a VA rating and getting VA compensation would help. But probably more importantly, when I worked, I had access to really top-notch care through my employer's health plan, and I could go anywhere and see anyone. I knew the moment I retired, that would be gone. And I wasn't at all confident that Medicare was going to give me what I needed.

So when we talked about retirement, we also talked about where we were going to retire. We'd been looking at South Carolina. And one of the first things I investigated was what kind of care for my Parkinson's would I get at the VA Medical Center in Charleston. And I was very happy to find out that, among other people, you were seeing patients there and that I could get on your list. And so I said, I know I'm going to get great care.

And not only the care, but the medications. That's such a huge concern for people who are on the verge of retirement. How are you going to fund your retirement? And we know medical costs can be a huge part of that cost. And for me, with regard to Parkinson's, those costs are virtually nil and the care is top-notch. I mean, how are you going to beat that? So it impacted, certainly. I think it's probably safe to say that the VA connection enabled me to get my retirement when I wanted to get it, rather than having to wait a couple more years.

Dr. Vanessa Hinson 02:01:08
Yeah, that makes total sense. And also, as you were bringing up, taking advantage of the benefits the VA offers, which brings me also to Lou's story, because benefits can be tied to a documented exposure to Agent Orange, not to belabor that too much, but I think it is very relevant here. Lou, in your case, you were very young. You were only 22 years old.

You were a nurse. You worked in field hospitals in Vietnam when you had an exposure or multiple exposures to Agent Orange. And when your hands started shaking decades later, did it ever cross your mind that that could have anything to do with what you went through decades earlier, when you were exposed as a young nurse?

Louise Eisenbrandt 02:01:55
Absolutely not. As a matter of fact, with my nursing background, I suppose I should have been aware that something was going on. But when you go to nursing school, you really don't talk about Parkinson's very much. I mean, it was discussed under neurology, and that was about the extent of it. When I saw the first neurosurgeon/neurologist, he said to me, oh, part of your brain is just aging faster than the rest. Well, and then he put me on a drug that they don't even use anymore and overdosed me.

So I had about six or eight months of something's wrong, but this guy is not helping me. So when I finally was diagnosed, I remember I said at the time, why me? I mean, what is in my background? And she said, well, you, there's no family history, which can be a factor. And then she said something that didn't get to me as I thought it probably should have later.

She said, exposure to herbicides and pesticides sometimes leads to a Parkinson's diagnosis. And she indicated that it's frequently found in farmers. And of course, I was an avid gardener and I powdered the roses once in a while. And so I said, I mentioned this to her, and I still remember her saying, no, Lou, we're talking big. And no light bulb went off until, and that was 2003, until 2010, as you indicated. I was just scrolling through the computer, and it indicated that those who were living with Parkinson's, who'd been exposed to Agent Orange, could file claims. Then the light bulb went on, and I said, of course, because I worked most of my year in the emergency room and we got the guys straight from the field.

The first thing we did was cut off their fatigues because you can't assess the injuries and the wounds unless you can see the whole body. Well, lots of them were in the path of spraying for Agent Orange. And so I did file a claim at that time, and it took me just eight months to get a positive response from the VA.

So I had no idea when I was, well, none of us did when we were there, of the harmful side effects of Agent Orange.

Dr. Vanessa Hinson 02:04:40
Especially if it occurs so many, many years later, right?

Yeah, that makes sense. Now, outside of the logistics of getting that connection with the Agent Orange established, share a little bit. What went through your mind thinking about how life would go on from diagnosis? You're a very active woman. You're a nurse. You shared, you have this hobby gardening, being outside. So it's very active. Did you ever think, this is going to change my life? I'm going to slow down. Everything will be different. And was there any depression or anxiety centered around that?

Louise Eisenbrandt 02:05:15
Oh, immediately.

I remember the first four days after I got the diagnosis, I went through, I guess, almost the signs that you go through in dealing with anxiety and grief. Shock. I remember spending two days on the couch curled up in a fetal position thinking, I'm never going to see my children married. I'm never going to see grandchildren. We traveled a lot. It's not worth traveling anymore. I even thought to the point, it's not worth buying anything anymore because I'm not going to be around to enjoy it.

And that caught me by surprise when I finally worked my way out of it because I had never experienced depression before. And then once I started reading more about Parkinson's, I realized that for those of us with Parkinson's, many of us are depressed, not because we were diagnosed with Parkinson's, but because we have not enough dopamine. I usually say I'm running a quart low, more than that, but that dopamine is something that makes us happy.

And as a result of not having that much dopamine, depression is very much a part of the process. And I read and read and read, and I also learned that it's not to be ashamed. You should not be ashamed to take antidepressants. And I've really been on an antidepressant pretty much since day one. And I've been living with this for 19 years.

So there are lots of other things you can do, exercise, and we'll talk about some of that later. But it was a big surprise to me to know that I had to deal with depression and anxiety.

Dr. Vanessa Hinson 02:07:12
Yeah, so many people, you're absolutely right, don't associate those symptoms with Parkinson's disease. They think it's just tremor and slowing down, but those psychological effects are often underappreciated.

Louise Eisenbrandt 02:07:24
Yes.

Dr. Vanessa Hinson 02:07:25
And then, Eric, coming back to you, there was another factor. Not only were you diagnosed with Parkinson's and had the low dopamine and maybe some depression from that, but you also are in the category, I guess, of veterans who suffer from post-traumatic stress disorder. About 20% to 30% that we know of our veterans have this particular PTSD condition. And in your case, that came on top of everything else. Do you think that makes it extra difficult? Or do you think the Parkinson's and the PTSD somehow influence one another?

Eric Arrington 02:07:59
I say a combination of both. Because for a while, I thought I was going crazy. You know, and I did not put it together until I finally took the courage to see a psychiatrist. You've got to see the docs. You can't have any fear. You know, because back in the day, when I first got in, all my buddies said, oh, you can't go see the crazy man. But the psychiatrists and the psychologists, they can help you. It's better than the alternative, although some people take the, I say, the easy way out. They tend to lean towards suicide. And that's not what you want to do. You know, go get the help that you need. Take the medication.

It helps if you take it in the right way. And because I see my doctor once every six months, religiously. And we just talk about things and how things should be. I have taken every class that I know of for PTSD in the VA up here in North Carolina. And, like I said, it is help along with the medication. So don't be afraid. It's not going to make you less of a warrior. It will enhance your abilities and make you stronger. Because what I had to tell my wife, I said, if I get acting crazy, turn me in. They will take care of me.

Dr. Vanessa Hinson 02:09:43
And as you're mentioning, the VA really has all these good programs for PTSD and depression care established, and you can access them in person. You can go to groups, but you can also, during the pandemic and even outside of that if you live in a rural area, access them virtually, which I'm so glad you sought out that help. And it takes also a burden off of your wife to be the only person watching you and helping you. So it also helps the caregiver tremendously.

And Jay, I think what you found to be your secret weapon really is what Lou already alluded to a little bit, which is the power of exercise, right? You really have put a lot into that, in educating other veterans and patients with Parkinson's about the power of exercise. And you personally enjoy this community-based boxing program. We call it Rock Steady Boxing a lot. It may not be taking place in person during the pandemic, but tell us a little bit about what you get out of the, what power you get out of exercise and what you would share with other people about that.

Jay Phillips 02:10:48
Yeah, Rock Steady Boxing is a super program. It's only for Parkinson's patients, as you said. We had several local locations. The last year has been difficult, of course, with the pandemic, doing a little bit of stuff online, but not so much.

A couple of points about Rock Steady Boxing. First of all, it is only for Parkinson's patients. It's designed for Parkinson's patients specifically.

It varies from provider to provider. Some providers, such as, you may be at a physical therapy facility where they have some of the equipment. You may be at a boxing club or a kickboxing club. So the exact exercises that you're going to use will vary from location to location, but they all follow certain principles.

One of those is, and this is a great thing about it, you go at your own pace. And this is very important for Parkinson's patients. You go as fast as you want or as slow as you want. You can punch the bag fast. You can punch the bag slow. And by the way, you only get to punch the bag. This is non-contact.

Jay Phillips 02:11:48
Nobody hits anybody else, so that's a good thing too. But you can go fast, slow. You can go big motions, little motions. Some of the exercises can be done either sitting down or standing up. There are different levels of classes in some locations for larger groups. Everything about it is structured so that you can go the way you want to go into it.

The other thing about it that's really great, and that I don't think you find in ordinary exercise classes for the public, is there's a strong cognitive component to it. We play math games, you know, flashcards with the multiplication tables on it, not counting the punches, of course, brain teasers, Peter Piper picked a peck of pickled peppers. Okay. Trying to do these kinds of things, you know, try riding an exercise bicycle with your partner across from you while you're showing multiplication cards, and whoever doesn't get the answer right has to go twice as fast or do a pushup or something.

So it's all structured, and we think there's something called neuroplasticity. I don't know if you touched on this earlier in one of the other panels, but the idea that the brain sort of compensates when you have problems, when you lose brain pathways or you lose some of the brain function, the brain itself tries to find ways around that, builds new pathways. And we think that this kind of stimulation of the mind helps with that process. And that's so important.

So it's not just physical. The physical part is great. It reduces the chance of falls, which, of course, leads to a lot of other complications if you have Parkinson's. And it helps with the balance. Those things are really great.

And it's a team. It's a room full of people all doing exercises together. And I think it's much harder to exercise on your own for most people than it is to do it in a group. There's a certain social pressure there once you've been involved with a group for a while, where you don't want to miss a class. You know, you worry if somebody misses a couple of classes, one of your buddies doesn't come, these kinds of things.

But there's one caveat too, that I'll have to mention with regard to exercise, whether it's Rock Steady. Right now, I'm also going to a program called PWR!, which is Parkinson Wellness Recovery, at the local YMCA. That's not as rigorous as the boxing class, of course, but it also focuses a lot on balance, turning, twisting, sort of keeping the flexibility of your muscles.

But whatever the exercise program is, it's just like medicine. You've got to keep doing it. If you stopped your carbidopa-levodopa tomorrow, what do you think would happen to your symptoms and how your disease was doing? You can't start up exercise one day and stop it the next and expect to keep the benefit. So you may not have to exercise seven days a week. Usually three or four days is great.

And I think one final point on that is I think maybe veterans have a little bit of an edge on that because most veterans are accustomed to some level of discipline and self-discipline, and you can bring that up. That's actually an advantage for exercise programming because you've got the ability within you to stick with it. And that stick-to-it-ness is so important.

Dr. Vanessa Hinson 02:14:58
If you only go once, like I did to try it out, the boxing class, I was so sore. Oh, my God. Definitely stick with it. But you're right, Jay. It's incredible. I can see it in my patients when they come back to me and how excited they are about it. Terrific.

But, you know, sometimes these group classes are not for everybody. Some people don't like that type of interaction. I think, Eric, you've made a lot of efforts to bring exercise to your own home. You've, you know, I think you're pretty active in your garage there, right? In North Carolina, what's going on there?

Eric Arrington 02:15:27
Most definitely. In my garage, I do fencing. And what I do is, I'm not as fast as I used to be, but I use fencing for accuracy, strength and balance, holding one of three different weapons: foil, épée and saber. And it truly, tremendously helps because you have to totally concentrate to get the movements right.

And on top of that, I still go to physical therapy whenever I can. I mow my own lawn. I don't have that many acres, but I just went to the doctor two days ago. He said, you're doing your own exercise. You're doing your balancing. You're still doing tai chi. Tai chi, you can do it sitting down in a chair or standing up. And it tremendously eases the pain and helps out with your balance and your strength.

But LSVT BIG, that's the Parkinson's premier program, where you do different movements, a series of about eight different movements. And that helps with your balance and your strength also. And you can also go to the website and find a variety of different authorized and unauthorized videos that suggest they may help. And I've used them also.

Dr. Vanessa Hinson 02:17:08
Yeah, the LSVT BIG is a great program. The VA has many physical therapists who are certified in this method, and if your local VA does not, they can send you out to community care to receive the LSVT BIG treatment, which is very helpful.

Now, one thing about exercise is you have to have motivation and energy, and those sometimes can be difficult with Parkinson's disease because many patients have fatigue, low energy and a lack of motivation that we think also has to do with the Parkinson's biology that we call apathy. Lou, have you experienced any of that difficulty?

Louise Eisenbrandt 02:17:46
Oh, yes.

And for a long time, I blamed it all on fatigue. But then, a couple years ago, I actually teach a class on learning to live with, managing the emotions of living with a neurological condition. Big words. Long phrase. But basically, when you get up in the morning, what's your day going to be like?

And one thing that I've noticed is, if you get onto this program of exercise, for me, it's treadmill, walking outside, as long as the weather is good. We've had a couple rough weeks this winter, but now everybody is getting out. I still play golf, not well, but I play it.

But if you don't have a particular routine and you want to try something different and maybe something low-key and ease your way into it, things such as meditation, tai chi, as Eric mentioned, is excellent, yoga, simple yoga, all those things help balance, which happens to be one of my problems right now.

And so if you can find supportive people, whether it's a class, or it's your relatives, or it's a group of friends, that's very important psychologically as well as the exercise. I really learned how important friends are once I was diagnosed. And, you know, avoid negative people. There's always somebody, there's one in every crowd, who has it worse than you do. And no matter what you have, they've got it worse.

But when you get fatigued, or you have anxiety, or you have what I call fuzzy brain, my friends who have cancer call it chemo brain. It just means that you're not as sharp. And the exercise helps, as we mentioned earlier, really helps to keep your brain sharp. I have found sometimes I have difficulty concentrating, and that's tied in with depression.

Decreased memory recall. Now, of course, when I mention that, our friends all go, well, look how old you are. We're all going through this. But it's a different degree. It's a different degree. It's a difficulty selecting words. The word is in the back of my head, I just can't spit it out. But that's something that I think people don't associate, the mental and psychological effects along with the physical.

Dr. Vanessa Hinson 02:20:35
Yeah.

Louise Eisenbrandt 02:20:36
When you say Parkinson's to somebody, they think hand tremor, shuffling walk and things of that sort. But there's so much that goes on inside. And there are days that you just don't, you know what needs to be done, but you just don't have the enthusiasm to do it. And that was a big shock to me because I always had four projects going at once. And I've learned that I just can't do that. I can try, but it's not going to be successful.

Dr. Vanessa Hinson 02:21:04
I somehow doubt that with you, but you have success written all over you.

Let me follow up on that since you said, you know, focus and memory can be an issue, even though it's subtle sometimes. How do you manage to stay on schedule with your medication schedule, which can be complex? Some veterans take medicine for Parkinson's every four hours or every three, or even every two hours. But when we have trouble focusing. How do you manage to take your pills on time, Lou?

Louise Eisenbrandt 02:21:34
Well, since I'm now up to eight or seven or eight a day, depending on my day, I schedule mine every two hours. Now, that doesn't mean that if I'm involved in a project and time gets away from me, that when I try to get up out of the chair, it's slower than normal.

But some people actually set timers if their Parkinson's is such that they have great difficulty moving if they don't take their pills on a regular basis. So you can do that. I think the other thing that a lot of people don't know is if you're taking Sinemet or the carbidopa-levodopa, you really need to schedule it before you have a protein meal or two hours after, and not take them at the same time because the body synthesizes protein and the Sinemet at the same time. And so you can lose some of the effectiveness.

I think the most important, and everybody develops their own pattern, I have my pills in a little weekly container. And so when I get to three o'clock in the afternoon and I see there's still more pills in there than there should be, I think, oh dear, I guess maybe I didn't take it. But your body generally will tell you when you need to take your medicine.

But just as I once heard another person with Parkinson's say, you have to think about everything you do. If you want to turn around, you think, okay, I put my foot down, I turn. Put my foot down, I turn. So if you're feeling discombobulated, it's okay. It's okay. Just take it slow and easy.

Dr. Vanessa Hinson 02:23:25
I like slow and easy. That's really good advice for probably any of us most of the time. Speaking of pieces of advice, as we're closing this panel, I would like for each of you to give a small piece of advice or just encouragement to the veterans who are listening into this symposium and just pass that along to them. Why don't you start out, Jay?

Jay Phillips 02:23:50
Oh, okay.

Well, we've covered most of the high points here. I mean, I think for me, having the expert care, getting the right medications, remembering to take them on time, exercise is so important. But there's one other component that I think, Dr. Hinson, you mentioned briefly earlier, and that's the role of the caregiver.

The VA where I live has had some excellent programs for caregivers in the past. And as the disease progresses, it becomes as much a burden on the caregiver, and at some point, perhaps more of a burden on the caregiver, depending on especially things like dementia, than it is with the patient.

So my wife and I, we go to the doctor visits together. She looks after me. She makes sure I remember to take my meds on time. And, you know, we look after each other. And I know not everyone has a care partner. Most of us fortunately do. But with Parkinson's, that care partner is as much a part of your treatment as anything else is and will go through and live with you with it. And so that's great.

Dr. Vanessa Hinson 02:24:57
That is so important. Glad you mentioned that again, Jay. Eric, how about you? Any closing comments?

Eric Arrington 02:25:04
All I got to tell everybody is to make sure you do your own research. What helped me was the Parkinson's Foundation and the VA's website. They have some great information on there. And also make sure you request from the Parkinson's Foundation resource books so you can be ready and practice going to the hospital.

So you know what you need to ask and make sure you take your medication and then list the medication, your doctor's name, number, how they can get a hold of them. Because I have a deployment bag, a ready bag. It lists my medication, name and number of my doctor to make it easy on them, how many times I've taken the meds. Because you need your medication on time, which is critical. Sign up for eBenefits and put it all together.

Dr. Vanessa Hinson 02:26:15
I like your practical thinking. You're making it easy on the doctors. No, that's really, really important when you go into the hospital to be prepared, like you were saying. So thanks for sharing that. And we will let Lou close it out for us. Your thoughts?

Louise Eisenbrandt 02:26:29
Well, I want to reinforce the caregiver aspect, for caregivers are just indispensable. Patience. Remember that we cannot hurry anymore. So be kind when we're getting ready to go somewhere. I am no longer driving, so I have to rely on my partner to drive. And my final is what I tell everybody at least once when I talk to them. Each Parkinson's patient is just like each soldier. No two are alike. Get help if you need it, and do not compare your symptoms to anyone else.

Dr. Vanessa Hinson 02:27:12
Well, thank you to all three of you again for sharing your experiences of living with Parkinson's disease with us. And even though I said in the beginning that you have at least three things in common, we also found out that your stories are quite different, which is quite typical for Parkinson's disease. No one patient is just like another patient. So thank you again for sharing that. And thank you for your service. Take care.

Amanda Janicke 02:27:46
Thank you so much to Jay, Lou and Eric for sharing their experiences and thoughts with us today. We want to take this opportunity to thank all of our veterans and their families for their service to our country. We hope that you find today's discussions helpful as you navigate your Parkinson's journeys. We will have another Q&A session after this next panel. Now it's my pleasure to introduce our final panel for today that will focus on the resources available to you through the VA and the Parkinson's Foundation.

Thank you so much for joining us today. During this panel discussion, we will focus on resources available to veterans with Parkinson's through the VA and the Parkinson's Foundation. I would like to start by having each of our panelists introduce themselves.

Stacy?

Stacy Coulter 02:28:58
Good morning. My name is Stacy Coulter, and I am a social worker at the Charleston VA Medical Center. I have been with the VA for 20-plus years and currently work with the interdisciplinary team here at the VA in Charleston with Parkinson's patients.

Amanda Janicke 02:29:15
Thank you.

Raven Neal 02:29:17
Good morning. Thank you, Amanda. My name is Raven Neal. I'm also a licensed clinical social worker. I currently work with the Ralph H. Johnson VA Medical Center. Currently, I serve as a program coordinator for the General Caregiver Support Program, and I've been with the VA for close to eight years, a little over eight years now.

Amanda Janicke 02:29:38
Great.

Sean Katalinas 02:29:39
My name is Sean Katalinas. I'm an occupational therapist also at the VA. I've been with the VA for over five years now, and I also am involved with the interdisciplinary Parkinson's clinic as well.

Amanda Janicke 02:29:53
Thank you. Stacy, I'm going to start with you. What makes a veteran eligible for VA healthcare?

Stacy Coulter 02:30:01
First of all, a veteran has to have an other than dishonorable discharge, and if the veteran enlisted after September of 1980 specifically, then they must have served 24 consecutive months in the military or they must be discharged for a disability related to their service. So those things make a veteran eligible for VA health care.

Now, a veteran can apply online at VA.gov/health-care, or the best way to apply is visit your local VA healthcare center to sign up for healthcare benefits. At that point in time, they would assign you to a primary care provider with the VA. Now, some veterans will have a copay for healthcare and services through the VA, and some will not. And that's based on either income or service-connected compensation.

The other thing I wanted to encourage you to do is locate your DD214 because you will need that to register for VA healthcare services.

Amanda Janicke 02:31:17
Great. Tell us more about VA benefits for veterans with Parkinson's disease.

Stacy Coulter 02:31:23
Okay. First of all, the VA recognizes Parkinson's as a presumptive condition related to service in Vietnam and exposure to Agent Orange. The veteran can apply for service-connected compensation for Parkinson's if they have been exposed to Agent Orange in Vietnam. Our Veterans Service officers and veteran service organizations such as the VFW, the DAV and the American Legion can often assist veterans with applying for these service-connected compensation benefits.

The other thing I want to mention to you is a benefit called housebound or aid and attendance benefits. And a veteran who served during a wartime period can apply for those benefits if they require the assistance of a daily caregiver. Those benefits can help supplement a veteran's income. Now, there is also a limit as to the assets a veteran can have for aid and attendance. And you could get assistance with that through your local veteran service officer.

Amanda Janicke 02:32:38
Okay. Thank you.

And as far as where veterans with Parkinson's disease can receive specialized treatment, there are many fantastic options, including the Parkinson's Disease Research, Education and Clinical Centers, called PADRECCs. These medical centers treat PD using state-of-the-art clinical care, education, research, and national outreach and advocacy. PADRECCs also coordinate a network of consortium centers that ensure accessibility and specialized PD care for veterans. For those who don't have access to specialized PD care through a PADRECC or consortium center, they can also be treated via telemedicine.

Stacy, what services are provided through the VA for those who need assistance with daily activities or require a caregiver?

Stacy Coulter 02:33:28
Okay, so first of all, the VA healthcare providers can order durable medical equipment for our veterans if needed. For instance, wheelchairs, walkers, shower-tub transfer benches, handrails, things like that.

We also have what's called a HISA grant. It's spelled H-I-S-A. And those grants help pay for home modifications for veterans with disabilities, such as barrier-free showers, handrails outside the home. We also can provide ramps for veterans who have steps to enter the home that can't maneuver their stairs to get into the home.

And some of the other things the VA can provide are respite care services. The VA can provide respite care for caregivers in the home, and that's about 30 days per calendar year that we can provide for that. We can also provide home health aide services.

Now, the home health aide services provide assistance to veterans with things like bathing, dressing, grooming, and just assisting the caregiver with things like that. The other thing that we do is we contract with adult daycare centers to provide adult daycare to veterans that require that assistance. Say, for instance, if the caregiver has to work and the veteran has to have care during the day or has to have someone stay with them during the day, then we can contract with adult daycare centers.

So the Caregiver Support Program, Raven's going to talk about that a little bit. We also provide support to our caregivers through VA. And VA social workers can assist with connecting you with those services and resources through the VA.

Amanda Janicke 02:35:29
Is long-term care available through the VA?

Stacy Coulter 02:35:32
Long-term care can be available through the VA. Several of our VAs throughout the country have what are called community living centers, and those are embedded within the VA medical centers. They do provide long-term care services. Now, beds are often limited in those, and also there are some guidelines for admission to those facilities.

The other thing is that the VA does have contracts with local nursing facilities. For instance, we contract with certain nursing facilities in communities, and we cover the cost of care for veterans who are 70% to 100% service connected.

I also want to mention that the veterans homes, those are not within the VA healthcare system. However, they are covered by the state or they are embedded under state services. So veterans can apply. They don't have to be enrolled for VA healthcare to apply for the state veterans homes.

In the state of South Carolina, for instance, there are three veterans homes throughout the state that veterans can apply for for long-term care. And those services are provided at a much lower cost than what would be required for nursing facility care.

Amanda Janicke 02:36:59
Okay. What is the role of the VA social worker, and how do VA social workers assist veterans with Parkinson's?

Stacy Coulter 02:37:06
Okay. As I mentioned in my introduction, we have an interdisciplinary care team here at the VA in Charleston. We do provide services to Parkinson's patients. In that clinic, we meet once a month. I work closely with the neurologist, the therapist, PT, OT, and psychologists, neuropsychologists, and we all provide care as an interdisciplinary team to those veterans.

Social workers often act as liaisons. We act as advocates. We really assist with linking our veterans to both VA and community resources. We provide information on VA healthcare and services, VA benefits, and we connect people to the needed home care services and things like that. So we offer a variety of services. We assist our veterans in obtaining those services, and we support our veterans. And we also provide counseling services to veterans and their families and caregivers.

Amanda Janicke 02:38:22
Thank you so much, Stacy, for sharing information about the available resources and benefits for veterans with Parkinson's. The Parkinson's Foundation also offers resources for veterans with Parkinson's disease and their families, including our website information at Parkinson.org/Veterans, our toll-free Helpline staffed by information specialists who can address Parkinson-specific questions. We have a library of educational resources, webinars, podcasts and books.

We also have targeted resources at the Parkinson's Foundation 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. Sean, we're now going to switch gears and have you talk more about allied healthcare services like speech, physical and occupational therapy, all of which have been proven to be instrumental in the treatment of Parkinson's. Sean, as an occupational therapist, you focus on helping people with daily living activities. What are some of the most common challenges you see veterans face, and how can occupational therapy help address some of those issues?

Sean Katalinas 02:39:37
Sure. As an occupational therapist, we can evaluate a patient's upper extremity musculoskeletal range of motion and strength, as well as their sensory functioning, hand and wrist range of motion, as well as a patient's ability to complete his or her activities of daily living, which we call ADLs. OTs are trained to be cognizant of a patient's mental health needs as well as their cognitive status. When evaluating a patient's ability to complete his or her ADLs, OTs can provide a patient with specific adaptive equipment to make them more successful.

For example, for a person living with Parkinson's, this might include adaptive utensils such as weighted utensils or self-stabilizing utensils to help reduce the effects of a hand tremor. We can also evaluate the need for adaptable bowls or plates that might have a suction cup attachment or a plate guard to help minimize mess while self-feeding. As an OT, we could also look at the necessary bathroom equipment to make toileting safer and to allow for more independence. This might include a raised toilet seat, grab bars by the commode or in the shower, a bedside commode or tub transfer bench, or even a shower chair.

If qualified and approved, sort of what Stacy was saying, home modifications can be completed through the HISA grant application. This might include a barrier-free shower, ramp installation or a doorway modification. This is done through a different department, but an OT could help facilitate this. OTs can also complete a driving assessment and make certain recommendations for driving adaptations. We refer these to a different VA facility, but we could help facilitate that process as well.

OTs can also help evaluate and recommend different techniques for dressing yourself and provide certain equipment such as dressing sticks, reachers or a sock aid that might make these dressing tasks safer and easier for the veteran.

Amanda Janicke 02:41:40
Okay. And the role of physical therapy is to help you keep moving as well and as long as possible, and enhancing the ability to move. When should someone with Parkinson's start seeing a physical therapist, and how can they access that therapy through the VA?

Sean Katalinas 02:41:57
Sure. It is recommended that someone who is diagnosed with Parkinson's be evaluated by both physical and occupational therapy as soon as possible. The sooner we could talk to a veteran and see what their deficits may be, we could definitely point them in the right direction in terms of maybe starting therapy or looking at different equipment. But a physical therapist will be able to evaluate a patient's lower extremity musculoskeletal strength, as well as their range of motion, and look at their balance. They could provide a walking aid such as a rolling walker, rollator or a U-Step walking device.

A U-Step walking device is a specific device designed for people with Parkinson's that may make them steadier while walking. We offer outpatient physical therapy at our main hospital, as well as our community-based outpatient clinics, which we call CBOCs. If a patient is not close to any of these locations, they may qualify for therapy in the community through Community Care.

A patient or care partner can ask their primary care provider for a referral to physical or occupational therapy.

Amanda Janicke 02:43:05
Okay. And Sean, what about LSVT BIG therapy?

Sean Katalinas 02:43:09
Sure. LSVT BIG is a specialized, amplitude-based exercise program to help patients with Parkinson's, but also different movement disorders, improve the quality and size of their movements. That may be the quality of their walking, or it could also refer to their ability to get dressed on their own or toilet on their own. It is a specific four-times-a-week for four weeks structured exercise program that could be run by an occupational therapist or a physical therapist. The VA currently offers this at our main hospital in Charleston or in the community if a patient qualifies.

Amanda Janicke 02:43:48
Okay. About 89% of people with Parkinson's experience speech and voice disorders. What type of speech therapy services are offered by the VA?

Sean Katalinas 02:43:59
Sure. A speech-language pathologist can evaluate for speech and voice disorders and instruct exercises for strengthening vocal quality. They could also assess for swallowing ability and make recommendations for specialized diets. A speech pathologist can provide LSVT LOUD, which is similar to LSVT BIG, but this focuses rather on the quality and amplitude of a patient's voice rather than their movement. And the VA currently offers this through Community Care for patients who qualify.

Amanda Janicke 02:44:31
Thank you so much, Sean. The Parkinson's Foundation not only offers information and resources about these therapies and the benefits to people with Parkinson's, 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. 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.

Now I'd like to invite Raven to talk more about the resources available to care partners through the VA. Raven, what is the Caregiver Program, and what resources are available to family members through this service?

Raven Neal 02:45:22
Sure. Good morning again. The Caregiver Support Program's mission is to promote the health and well-being of caregivers who serve our nation's veterans. We provide education, resources and support services. Some of these include one-on-one coaching, telephone or virtual support groups, and web-based education and training. A caregiver can be a spouse, another family member, a friend, anyone that's assisting the veteran on a regular basis.

There are two programs under our caregiver program. We have the general program, which includes some of the services that I just mentioned, and then there's the Program of Comprehensive Assistance for Family Caregivers, which includes some additional benefits and a financial stipend that's awarded to the caregiver.

Amanda Janicke 02:46:14
Okay. How are caregivers referred to the caregiver program, and are there any fees for services?

Raven Neal 02:46:21
Sure. Caregivers can be referred by calling their local VA medical center. Veterans can call as well and ask to speak with someone from the Caregiver Support Program. Veterans can also be referred through their PACT team or any specialty clinic. They can make a referral directly to the Caregiver Support Program. Veterans that are interested in applying for the Comprehensive Program could go to the website caregiver.va.gov. There, you can print the application and mail it in, or you can apply directly online.

And there are absolutely no fees associated with any caregiver support services through the VA.

Amanda Janicke 02:47:04
Great. How would I know if my caregiver is eligible for compensation as a paid caregiver through the VA?

Raven Neal 02:47:12
There are some very specific criteria for the Comprehensive Program, which is the program that has the stipend attached to it. The veteran must be at least 70% service connected, and this is a combined rating, not 70% for one particular rating, but a total rating of 70%. The veteran must have served active duty either May 7, 1975, or before, or after September 11, 2001.

The veteran must need assistance with at least one ADL, and that's dressing, bathing, grooming, or have a need for supervision due to safety reasons. The veteran either has to have been receiving care from a caregiver for six months, or it is projected that the veteran would need care for six months continuously. If the caregiver is not a blood-related relative to the veteran, they must live with the veteran, or the veteran must live with them, to be considered for the Comprehensive Program.

Amanda Janicke 02:48:21
Okay. And as a caregiver, do I have to go to the VA for classes?

Raven Neal 02:48:26
Currently, due to the pandemic, the majority of the services that we're providing, at least at Ralph H. Johnson, I'm sure across the country, are virtual or by telephone. So as of right now, caregivers do not have to come to the VA to get the services that we provide. We are hopeful that once we get beyond the pandemic, we will be able to offer some face-to-face services, support groups and things at the local medical center. But currently, everything is virtual, so the caregiver would need access to a smartphone, a laptop or any type of tablet where they can have video capability.

Amanda Janicke 02:49:01
Okay. And Raven, is there a caregiver support line I could call after hours for support?

Raven Neal 02:49:08
Absolutely. There is a caregiver support line. It is attached with the VA. VA social workers respond on that support line. The number is 855-260-3274. That line operates Monday through Friday from 8:00 a.m. to 10:00 p.m. Eastern Standard Time, and on Saturdays from 8:00 a.m. to 5:00 p.m. The wonderful thing about the caregiver support line is the caregiver or the family member, the veteran - veterans can call in as well.

Those social workers will make direct contact with the local VA, whatever area that veteran is in. They will send a note over to that team for follow-up. So if the caregiver is under stress or just needs some additional resources or wants to connect with the local caregiver support team, they will make sure that we have notification so that we can follow up with that caregiver within the next business day.

Amanda Janicke 02:50:12
That's wonderful. Well, those are great resources. Thank you, Raven.

The Parkinson's Foundation also has a toll-free Helpline for Parkinson's-specific questions and concerns. That number again is 1-800-4PD-INFO or 1-800-473-4636. Our information specialists are available Monday through Friday from 9:00 a.m. to 8:00 p.m. Eastern and can answer questions in both English and Spanish. You can also email Helpline@Parkinson.org. For more information on the caregiver resources available through the Parkinson's Foundation, you can also visit Parkinson.org/Caregivers to access our Caring and Coping book, videos, our Parkinson's Hospital Kit, which can help you and your loved one with Parkinson's prepare for a planned or unplanned hospital stay. If you're not sure where to start, feel free to call the Parkinson's Foundation Helpline, and they can help you connect with the right resources to get started.

Thank you so much for joining us. Now we're going to take some questions from our web audience.

All right. We're ready to get started with some questions from our web audience. Welcome back.

So, question first, I want to start off with Stacy. I am a veteran with Parkinson's, and I have never signed up for VA healthcare. After I apply to the VA for healthcare, how long does it take to be approved? And are all vets approved, or is there a net worth requirement a veteran must meet to qualify for VA benefits?

Stacy Coulter 02:52:20
Okay. As long as you register with VA healthcare, they will tell you right away if you're eligible for VA healthcare. In the beginning, I kind of went over the eligibility guidelines for services. So if you have an other than dishonorable discharge, then you should be eligible for healthcare unless you joined after September of 1980, and then you have to have served 24 consecutive months. So you should be eligible right away.

Sometimes it does take a little while, probably up to a month possibly, to get a primary care provider or an appointment set up. Depending on the VA, there may or may not be a wait time for primary care. So you should get established with primary care first, and then they can refer you to the neurology or Parkinson's team at your VA.

Amanda Janicke 02:53:20
Okay, thanks. Yeah, I have another one for you actually. Any tips or suggestions on how to prove you were exposed to Agent Orange in a non-presumptive situation? And what are some of the other exposures that are linked to Parkinson's and additional benefits through the VA? For example, water contamination at Camp Lejeune.

Stacy Coulter 02:53:44
So, as far as I know, they have not identified any exposure at Camp Lejeune related to Parkinson's. I know that's fairly new. I would always suggest getting what's called a Gulf War examination through the VA, and usually our Compensation and Pension examiners, we usually have a person at each VA that can set up that appointment. So I would definitely request to register, or you can go online and register for the Gulf War benefits exam, and then they send that to your local VA.

You can always call your social worker at the VA or any social work department, if you don't have an assigned social worker, to obtain that information. Usually most of us know who to refer to for those benefits. You do have to have proof, of course, that you did have exposure to Agent Orange.

I think they're coming up with new diseases all the time linked to Agent Orange exposure, pesticides, herbicides and the water contamination. You can usually go online and find out new information that's been posted about that, or you can contact your local benefits service officer or benefits organization in regard to that.

Amanda Janicke 02:55:21
Okay. Thank you. Thank you, Stacy. And I'll mention here too that we at the Parkinson's Foundation, we do include a list of Parkinson's benefits and exposures on our website at Parkinson.org/Veterans.

All right, so we have another question coming through, and maybe we can all think about this one. My partner is reluctant to admit his diagnosis. How can I help him accept what is happening to him? What are your thoughts on this? Anyone on the panel? My partner's reluctant to admit his diagnosis. How can I help him accept what is happening to him?

Sean Katalinas 02:56:01
I think maybe a good first step would be presenting some just general resources to him and just reviewing some of the basic symptoms and asking if maybe he identifies with any of these, and going from there might be a good first step.

Stacy Coulter 02:56:22
Yeah. I think the other thing is just getting support for the caregiver sometimes. We offer, like Raven can tell you, caregiver support programs and services, and also the support groups in your local community can often help spouses and caregivers.

Raven Neal 02:56:48
And I would just add, just being patient and empathetic with the veteran. Getting a new diagnosis is not always easy, and so the veteran themselves is going through a process of acceptance. And so as a partner or a caregiver, I would say just being patient and empathetic. And as Stacy mentioned, caregivers can get connected with the caregiver team, maybe get some training and some support, and just supporting you as a caregiver and helping the veteran.

Amanda Janicke 02:57:24
Thank you. Thank you. Sean, I have a question for you next. It would be good to know what kind of living arrangement or house construction changes I should be making now if I intend to age in place. Do I need to put in some handrails, adjust the shower? What should I do now while I still can? And what is the amount that is available with HISA?

Sean Katalinas 02:57:49
Sure. That's a really great question. It's not always possible, but looking at a one-story home where we don't have to worry about steps, we want to think about no steps to enter the home or a very little threshold to enter the home. In terms of bathrooms, some basic changes to make in the beginning would be maybe some grab bars by the toilet, or maybe a piece of equipment called a toilet safety frame that puts two handles on each side of your commode. We want to think about, if you're looking at going into a new house, walk-in showers would be the best option. We want to kind of avoid a tub shower if possible.

The best option would be a barrier-free shower. That would be a walk-in shower without any sort of barrier to go over as you enter the shower. You want to think about grab bars in the shower as well, perhaps a long shower hose. Also, you want to think about maybe a shower chair in that walk-in shower.

And you do want to pay attention to the doorways as well. You want a decent-sized doorway to get through if you're thinking about a possible power wheelchair in the future or even just a rolling walker. Some of the older homes have very narrow doorways, and it's actually very difficult to even go through with a rolling walker. So you want to think about that. In terms of the amount of the HISA grant, I'll let Stacy answer that, but yeah, the HISA grant can actually make some of those changes for you. But if you're looking, if moving, you want to think about some of these things beforehand.

Stacy Coulter 02:59:29
Sure. As far as HISA goes, if a veteran is over 50% service connected, they are entitled to a lifetime amount of $6,800 through the HISA grant. Now, if they are below that service connection amount or non-service connected, it's only about $2,000, but it does help.

There's also a housing grant that veterans can apply for through the VA, and there are some strict guidelines, but those housing grants often allow, I think it's $70-some thousand, a lifetime amount to make home modifications. It's called the SAH grant, and you can always go online or talk to your benefit service officer about getting more information and applying for that grant.

Amanda Janicke 03:00:21
Okay. And Stacy, we have another question for you. Can having Parkinson's increase my disability amount from the VA? If so, how do I apply? And I currently have 60% disability, which was awarded prior to my Parkinson's diagnosis. Should I apply for an increase in my disability now or wait until Parkinson's progresses?

Stacy Coulter 03:00:45
Okay. So if you're service connected for Parkinson's, my suggestion would be to talk to your local service officer about maybe applying for what's called a permanent and total disability rating or a housebound disability rating. So those are additional benefits that can be paid to veterans who already have a service connection, but it has to be related to a service-connected condition to obtain those additional benefits.

If you didn't have exposure to Agent Orange and you're not service connected for Parkinson's, then likely they're not going to give you service connection for Parkinson's, if you didn't develop that during your military service or from exposure to Agent Orange. However, you could file for an increase for Parkinson's, I think, if you become more disabled, that type of thing, or apply for those additional benefits that you might be eligible for.

Amanda Janicke 03:01:49
Thank you. Thank you so much to our panelists, presenters, and to all of you for joining us today. As I mentioned previously, if there are questions that we did not address today, please call the Parkinson's Foundation toll-free Helpline or contact your local VA medical center. In closing, I would like to welcome back Shira, who will wrap us up today.

Shira Rosenfeld 03:02:16
Wow! What a tremendous program and opportunity really for us all to learn from these experts and to hear directly from veterans living with Parkinson's disease. On behalf of the Parkinson's Foundation and the Ralph H. Johnson VA Medical Center, I want to thank all of our presenters and panelists for their time and participation today. We also want to thank you, all of our attendees, for joining. We hope you learned so much more about navigating your journey with Parkinson's.

Also, a sincere thanks again and appreciation to our program sponsors, and we invite you to learn more about them and their Parkinson's therapies by visiting the link in the chat. We hope that each of you will reach out to the VA and to the Parkinson's Foundation for more support, resources and guidance on your Parkinson's journey, and know that both organizations are here for you, and we look forward to connecting.

Stay tuned for information on other upcoming veterans programs, including our event in April focused on social connection and empowerment, as well as our other online wellness and educational events through the Foundation's PD Health @ Home program series. Now, just a few last reminders. Today's program was recorded, and a link to the video will be mailed out to all event registrants in about a week. The resources and links for most everything we mentioned today are also included in your PDF of event materials, which will be emailed out again with the video.

Immediately following today's program, a survey will pop up on your screen, so please don't close out the Zoom window yet. Take a moment to complete the evaluation so we know how we can improve our programs in the future to better serve you. Your feedback is so important to us. In closing, thank you again for your participation and for your service to our country. We hope you enjoy the rest of your weekend.