Tracy Weistreich 0:00:01
Welcome to Understanding Parkinson's Disease and Mental Health in the Veterans Community. Today's webinar is proudly presented by the Parkinson's Foundation in partnership with the U.S. Department of Veterans Affairs, Parkinson's Disease Research, Education and Clinical Centers, otherwise known as PADRECCs, and the Veterans Health Administration. Hello, everyone. My name is Dr. Tracy Weistreich, your moderator for today's program. I'm the Nurse Executive at the Veterans Health Administration National Center for Healthcare Advancement and Partnerships, or HAP for short, under the Discovery, Education and Affiliate Network, or DEAN Office.
At HAP, we serve as a trusted resource and a catalyst for the growth of effective partnerships at the national, state, and community level and advance the health and well-being of veterans through exploration of innovative, safe, and ethical emerging therapies. Partnerships such as this one with the Parkinson's Foundation are force multipliers, enabling the Veterans Health Administration to improve the health and well-being of more veterans, their families, caregivers, and survivors. For those of you who are tuning in for the first time, we're so glad to have you here.
Since 2020, the VA and the Parkinson's Foundation have partnered in the effort to reach more veterans living with Parkinson's and their care partners in order to provide tools, information, resources, and support. The Parkinson's Foundation with the veteran community. After which, we will hear from a veteran living with Parkinson's about his experiences with mental health and accessing support through the VA. Then, during a presentation from a VA physician, we'll learn more about the relationship between mental health and Parkinson's disease. Finally, we'll end the program with a question-and-answer panel responding live to your questions submitted through the chat.
Before we get started, though, there are a few webinar tools and features I'd like to point out. The question-and-answer icon is located at the bottom of your screen. This is where you can type in your question or message us if you have a technical difficulty. We will answer as many questions as we can toward the end. If you open your chat box now, you'll find the link to download the slides for today's webinar. This webinar is being recorded and will be available on demand early next week. All those registered will receive an email notification with the link.
It will also be available on the Parkinson's Foundation website at parkinson.org/VA2022. If you would like to download a copy of the slides, please use the link that is in the chat box right now.
Finally, we're trying out a new closed-caption feature on Zoom. Keep in mind that this is not perfect and there will be errors, but we hope this option will help make our programs a little more accessible. If you are joining using a phone or tablet, you should already start to see the captions as I speak. If you are on a computer, hover the mouse toward the bottom of your screen and click Live Transcript or CC for closed caption. You can then click Show Subtitle. Now, it is my pleasure to welcome our first guest speaker, Shira Rosenfeld.
Shira is the Vice President of Strategic Initiatives at the Parkinson's Foundation. Shira leads the Parkinson's Foundation's partnership activities and is the point person in the Foundation's collaboration with the VA. Shira will speak today about the Parkinson's Foundation Veteran Survey.
Shira Rosenfeld 0:03:55
Thank you, Tracy. Good morning, good afternoon, everyone. Thank you so much for joining. I wanted to share a brief update on a recent survey the Parkinson's Foundation conducted focused on veterans with Parkinson's disease, which was, in part, the basis for planning today's webinar.
The veteran survey was carried out through the Parkinson's Foundation program PF Surveys. Just a little background on that: the Foundation launched PF Surveys several years ago to inform research on Parkinson's disease and to promote a better understanding of some of the most pressing needs and issues facing the Parkinson's community. PF Surveys is driven by the experiences and insights of people living with the disease and their care partners, and helps ensure that real experiences are directing and influencing research.
Estimates show that approximately 110,000 veterans with Parkinson's disease receive care through the Veterans Health Administration. But we also know that many veterans with and without Parkinson's receive their care through the VA and outside of the VHA network. The Parkinson's Foundation, as part of our partnership with the VA and our joint commitment to improving care for veterans with Parkinson's disease, conducted a survey in 2021 through our PF Surveys program of veterans living with Parkinson's.
For this survey, we were interested in understanding health status, care experience, and healthcare use by veterans living with Parkinson's who received care both in and outside of the VHA system. Questions of particular interest were related to mental health, health and wellness, referrals, and other areas of utilization and satisfaction with their care. One of the main goals was to better understand what areas of care can and need to be improved to provide the best care possible and support for veterans living with PD.
There will be a manuscript about the survey that will be released later in the year with many more details and discussion on some of the key findings, but it was clear from the research that there are some real gaps in knowledge and information as it relates to mental health and needed education, all of which were really drivers in planning today's webinar. The survey provided insights into the need to educate the veterans community on mental health symptoms related to Parkinson's and how to recognize those symptoms, where to go for mental health treatment and support, and what that treatment might look like.
It also highlighted the importance of talking to one's provider about their mental health on the good days too, and really having an open, honest dialogue. It showed the need for understanding and awareness of mental health resources for veterans with Parkinson's disease and care partners from the VA, as well as the Parkinson's Foundation.
We hope some of these calls to action are part of what you take away from today's webinar, including understanding the importance of getting early referrals and treatment for mental health, understanding the types of care that veterans with Parkinson's can receive and are eligible for, whether that be through the VHA or elsewhere, and where and how to access good mental health resources.
It was our goal to take some of this research and put it into action, which is what we are doing here today with our speakers and panelists from the VA, from the Parkinson's Foundation, and from the veteran community to share their experiences and expertise. I'll now turn it back to our moderator. Thank you.
Tracy Weistreich 0:07:57
Thank you, Shira. That was great. Next, we get to hear from retired U.S. Marine Corps Sergeant Dr. Patrick Welch. In this five-minute video, Patrick talks about his service experience, his use of VA's mental health services, and how these services impact his journey with Parkinson's.
Patrick Welch 0:08:23
Hello. My name is Patrick Welch. I am a Marine Corps Vietnam veteran. I have PTSD, and I have Parkinson's disease from my exposure to Agent Orange. In the next few minutes, I will talk a little bit about my mental health and Parkinson's disease journey.
No one, absolutely no one, goes to war and returns the same person. The things we see should not be seen by anyone.
When I came home, I did not talk to anyone about my time in Vietnam. My stock answer was what you hear many veterans say: "I'm fine." And we know that reply means they are not fine.
Each day, I would put on my business suit, my coat of armor, if you will, go out into the world and project confidence and an air of authority. Each night, when I came home and removed my armor, I would collapse from the weight of the day. It took me 19 years to finally accept that I was not fine. I sought help from VA mental health, and thus began my recovery journey.
Today, I still take medication for depression. I still continue with individual sessions with social work, psychology, and psychiatry.
Late in 2019, I started to develop tremors in my left arm. As I have severe nerve damage from my wounds, I thought this was just more of the same. Going into 2020, the frequency of the tremors increased, and so did the severity. In March 2020, when COVID hit, my ability to get into the VA for an appointment with neurology was canceled, as no one was allowed into the hospital.
I began to do more research and determined that I might have Parkinson's disease. There are 10 early signs of PD. Some of the symptoms I had were the tremor, loss of smell, trouble sleeping, and dizziness.
I found out that the VA had formed the Parkinson's Disease Research, Education and Clinical Centers across the country in 2001. The research led me to the Parkinson's Foundation. The Foundation had an office in my community, and I made contact with a gentleman named Chris Giomali, who provided me with a great deal of information and assistance.
In October 2020, I was finally able to get an appointment with VA Neurology and was diagnosed with Parkinson's disease. My reaction was how most of us feel when we receive a diagnosis of another disease. I became very depressed.
PD can have an extremely negative effect on your mental health. We know that your mental health also can be detrimental to your physical health. Now, we know that PD is not a fatal disease, but it can have an extremely negative effect on your quality of life. My VA doctor prescribed reserpine and later carbidopa.
A key factor in taking an aggressive approach to maintaining your quality of life is exercise. The VA and the Parkinson's Foundation offer many resources to get you engaged in exercise programs that will allow you to maintain a good quality of life. On the Parkinson's Foundation webpage, there is a great bit of information on exercise programs that can be done in the comfort of your home. The VA Whole Health Program provides many types of exercise that can also be done in the home or at a VA medical center. The VA also offers programs for the spouses of veterans with Parkinson's disease.
Exercise is a critical aspect of how you walk and your balance. Falling is a major negative aspect of Parkinson's disease and can lead to hospitalization. I personally am involved in Parkinson boxing therapy.
We know from VA statistics that there are approximately 110,000 veterans with a clinical diagnosis of Parkinson's disease. My role as a volunteer with the Foundation and the VA is outreach. Thank you.
Tracy Weistreich 0:13:25
Thank you, Patrick, for sharing your story with us. Patrick will join us again later in the webinar during the question-and-answer period. It is now my pleasure to welcome Dr. Laura Marsh. Dr. Marsh is the Executive Director of the Mental Health Care Line at the Michael E. DeBakey Veterans Affairs Medical Center and a professor of psychiatry and neurology at Baylor College of Medicine.
Dr. Marsh will speak today about recognizing mental health symptoms, treatment options, and communicating with your providers. Thank you, Dr. Marsh.
Laura Marsh 0:14:02
Thank you. Thank you for having me. I am putting my slides on the slideshow, and I will do the display settings. Just one second. How's that? Is everything okay? Yes, great.
Well, thank you for having me. It's really my pleasure to be here. I have a dual role where I am a psychiatrist who has spent her life working in Parkinson's disease and taking care of patients with Parkinson's and mental health issues. But I also have a role in which I oversee mental health care in our Houston VA. It's really a pleasure to be able to put all that together for veterans, whether you're getting seen at the VA or not at the VA.
Today, we'll be talking about how you, as a veteran, can recognize and manage your common mental health issues, what your role is, and how you can work with your caregivers to optimize that experience with Parkinson's. It's really important to understand how mental health symptoms emerge in the context of PD. I'll talk a little bit about that. I won't get into all the details of the biology, but I will mention that. I'll spend most of the time talking about treatment approaches and options for you, and then conclude with some thoughts about how to maximize and optimize your communication with your clinical team.
The first part, as I said, is to understand what symptoms are possible in the context of PD. Then I'll go over some common conditions so that, if you have observed them in yourself, you can bring those up with your clinician. What's important to understand first about Parkinson's, and why maybe there hasn't been this emphasis on recognizing mental health symptoms, is because initially they weren't recognized as part of Parkinson's.
When James Parkinson described the condition that took his name, he actually examined four patients, and two of them he had witnessed from outside his house, looking out the window at people walking on the streets of London. You can see here he talks about the tremor, the involuntary tremulous motion. He talks about the posture and how it tends to bend forward in Parkinson's. He talks about how people walk differently, but he says very categorically that the senses and the intellect were uninjured. The traditional view of Parkinson's continued on this way for quite some time.
But as people lived longer and we were observing things, as Parkinson's could be treated with medications effectively, it became quite apparent that the traditional view of Parkinson's did not match the lived experience with the disease itself. What you see is this progressive increase in attention and research on the mental health aspects of Parkinson's. When you look at the total number of articles, in the 1990s, when I started doing this, there were maybe 40 to 50 articles a year. Now, there are over 2,000 to 4,000 articles coming out just in the last two years.
We've really seen this nice increase, and I think the next step is translating it into everyone's care. I think that's why we're doing this today: to help everyone get on the same page. One of the first things you need to understand about Parkinson's is that mental health issues are also part of your Parkinson's. What we know now is that mental health symptoms occur prior to your Parkinson's diagnosis.
Laura Marsh 0:18:04
In order to have a diagnosis of Parkinson's, you have to have the three characteristic motor signs, which are tremor, rigidity, and bradykinesia, and the disease has to be progressive. But before that occurs, you have to have sufficient degeneration of those dopaminergic neurons in your brain.
Meanwhile, other things are happening in the brain that appear to be part and parcel of Parkinson's itself. What we now describe as premotor or prodromal symptoms include depression, anxiety, loss of sense of smell, even constipation. But depression and anxiety, particularly, have been reported for quite some time. As you can see, these articles that I cite, one of the first ones is coming from 1997.
What we see often is that, on average, a depressive syndrome will precede Parkinson's diagnosis by about four to six years. With anxiety, we see that even more often. This was something that I saw when I started seeing a series of Parkinson's patients. Two to three years before they had the onset of Parkinson's, a patient would present with panic attacks or claustrophobia, etc. As an adult psychiatrist, I know that those disorders don't come on when people are in their late 50s. They typically come on in adolescence or young adulthood. This seemed very strange.
Then I was seeing more and more people who had these kinds of reports. The symptoms will either coincide with PD onset, or they'll present up to even 20 years before the motor signs. When you look at large samples of people in the general population, a 12-year follow-up of 35,000 men, even those people had high anxiety and reports of anxiolytic use, medicines like Valium or lorazepam, Ativan, that people used to treat anxiety—not that they should, but they have used it. Those were all associated with a relative increased risk of developing Parkinson's eventually.
This is data that we keep seeing again and again. Prior to PD diagnosis, you see these symptoms. Even at the initial time of diagnosis, we can see symptoms that are consistent with a mood disorder. This is data from 1967, which is shortly after we started having levodopa available. People started writing more descriptions of Parkinson's in a way that used actual data and were sort of parsing things out.
When I look at this, I look at tremor, gait disturbance, and stiffness. Those are all pretty classic for Parkinson's, its initial symptoms in these 183 people. But other symptoms like slowness, muscle cramps, aching, depression and nervousness, in particular fatigue and decreased facial expression, are all things that can go along with just the initial presentation of a depressive diagnosis. Not every patient has depression or nervousness, but some people do, and one can imagine that it can be difficult to separate what is Parkinson's versus what is depression.
The reason is you can't separate them, because they actually are going together. They are part and parcel of Parkinson's, and it's related to the brain changes that are occurring with Parkinson's.
Laura Marsh 0:21:40
When I looked at different conditions, specific psychiatric diagnoses that I would treat as a psychiatrist, in a sample of patients, I had a study I was doing back when I was working in Baltimore. We looked at 250 community-based individuals with Parkinson's. They did not have a dementia diagnosis, and we conducted full psychiatric interviews on these folks. Anyone could participate. What we found is that, at the time we met these individuals, 80% had at least one psychiatric diagnosis.
The 20% were just lucky. I mean, they did not have any prior or current psychiatric diagnoses. The most common psychiatric diagnosis was some sort of mood disorder, in particular major depression. The next most common was anxiety disorders of various types, at 40%; psychosis of various types, present in a little bit over 20%; impulse control disorders, about 15%; and 10% for the current. Very few people actually had substance use disorder.
When you see this, it really emphasizes that it's important to have the mental health component be addressed as part of your ongoing care. What makes that even more important, that we're moving in that direction, is because the data show that the mental health issues have tended to be undertreated.
That data that I showed you was from before 2010, and out of those 250 people, 97 had a major depressive disorder. These are people, if I saw them, I would treat them with medications, but also psychotherapy, exercise, a whole panel of treatment options that I'll be talking about. But these were not my patients. There were only 10% of those people, so about 10, who were totally completely well-treated, asymptomatic, nothing more to do with them. They were doing fine.
Sixty-three percent were partially treated, and that's a big problem. I had a patient one time who said, "Well, I got treated for depression. The doctor said depression was part of Parkinson's. He started me on an antidepressant, and I continued to be depressed because I figured it was part of my Parkinson's, just like you might still have some tremor." But in mood disorders and many other psychiatric conditions, we actually treat to get them under complete control, or so that they can be managed. We really want to get this group of people who are partially treated fully treated.
Even more so, there were 27% whose condition wasn't recognized at all. We see that, if you look at the average duration of folks, it's quite a long time. 182.4 weeks is several years that people had been suffering. One of the reasons that's particularly important is because untreated mental health symptoms have a greater effect on quality of life as compared to the impact of motor symptoms themselves on quality of life.
We also know, and as Patrick had said, that when you have mental health symptoms, they aggravate your motor and cognitive deficits. They make disability worse over the course of PD. It doesn't matter what medical condition you have, whether it's heart disease or lung disease: if there is a concurrent depressive disorder, that makes your medical condition worse. It also increases your risk of other psychiatric conditions and economic strain, caregiver distress, but fundamentally as well, just the suffering that the person goes through. That's what we want to alleviate.
Just to recap that, what I'm emphasizing is that when you think about your mental health conditions that are occurring in the context of Parkinson's disease, it's really important to think about how they're occurring over the entire course of PD. It's not just a cross-sectional time. What we see here is, if dopamine neuron loss starts back in your, say, 30s, and by the time you get Parkinson's you're about 60 years old.
Laura Marsh 00:26:21
You wouldn't get your motor symptoms until later, but during that time you might have episodes of depression or anxiety. You might have sleep disturbances, including something called REM sleep behavior disorder, which is a very particular kind of nightmare or sleep disturbance that people can have. Then your motor symptoms begin, but people may also begin to experience pain, fatigue, or cognitive symptoms. Over time, there are other symptoms that occur as the disease progresses, in particular other cognitive problems and the development of psychosis.
It depends on where you are in the course of Parkinson's, in your journey, that we can look for things and try to limit their appearance, as well as treat them so they can be better managed and your life is less affected by them. Looking at how we recognize these, and what you can do on your own, what are the things that you need to think about? The first is that when we're looking at depressive disorders, it's very important to remember that isolated emotions are not the same thing as a mood disorder.
Patrick said when he got the diagnosis of Parkinson's, it led to him feeling depressed. Some people will get the diagnosis of Parkinson's and say, "I was so glad because I thought I had cancer." Those are isolated emotions. Those do not equal a mood disorder. Mood disorders vary in severity and type, but the key feature is that the symptoms are pervasive and persistent. What you have to have, though, is a change in your mood or a change in your ability to enjoy yourself or be interested in things.
I often find that for many people, it's not about whether you can be happy, because some people can be happy in the moment but still have a depressive disorder. Often what they'll experience is a decreased ability to enjoy things that normally they enjoy. It might be as simple as seeing one's grandchildren. When someone gets to the point that they can no longer see their grandchildren and enjoy them, that's really too far. If the only thing they're enjoying is their grandchildren in their life and everything else is still pretty blue, we need to really make sure that person gets treated for their mood disorder.
Looking at decreased interest and pleasure is very important. You can have depression without specific sadness. There are physical symptoms of depression that are in PD as well as in depression, such as appetite and weight changes, eating more, eating less, losing weight, gaining weight, sleep disturbances, sleeping too much or sleeping too little, moving slowly, fatigue, loss of energy, decreased ability to think or concentrate, being indecisive, questioning oneself, and self-doubt. That can be in both conditions. With depression, what you're going to see is a certain kind of agitation, or pacing in a way that's also associated with the emotions; feelings of worthlessness; excessive guilt; or thoughts that one's life isn't worth living, thoughts of death, suicidal ideation, or even attempts or specific plans, along with the depressed mood or decreased interest or pleasure.
Laura Marsh 00:29:52
To recognize a depressive disorder, it's really important to look for the emotional features, ask about them, or look to see whether you have them. I've mentioned sadness, decreased interest, and decreased enjoyment. Sometimes people have more pessimism. They're thinking about everything that's going to go wrong. "I have Parkinson's now," even though they're doing very well and their Parkinson's motor symptoms are managed well. When they're depressed, they can be extremely pessimistic.
What's always been most remarkable to me is how I can see someone who is minimally affected by Parkinson's but has a horrible depressive disorder early on. Their mood disorder gets treated, and five or six years later their Parkinson's has progressed quite a bit, but they are able to enjoy themselves. They're not pessimistic. They feel like they're handling themselves. A mood disorder really changes the lens that you look at the world through. People can also have inappropriate guilt, a negative view of their sense of self, feeling unable to cope, or the idea that you have no bootstraps.
Sometimes I say that a depressive disorder is the absence of bootstraps. As someone starts to get better, their bootstraps start to recur. Irritability might be there. Again, these physical symptoms will also worsen with active depression, but it can be hard to distinguish whether those changes are part of PD or whether they're part of depression, and to make the diagnosis.
Anxiety disorders are also common in Parkinson's, and we call them clinically significant. People can get anxious about all kinds of things, but we know that when someone has an anxiety disorder, it's not just an understandable reaction to having Parkinson's or, "Can I get across the street? There's traffic coming and I move slowly." It's not that. It's more persistent, pervasive, problematic, clinically significant anxiety. We already know it can occur before Parkinson's even begins.
That in and of itself suggests that it's not only an understandable reaction to Parkinson's disease itself. We also know that anxiety can occur along with depressive disorders and other mental health disorders, or it can be secondary to anxiety symptoms. If someone is having memory difficulties or concentration difficulties as part of their Parkinson's, they can get anxious when they're put into situations that require them, say, to do their checkbook or do mental math, whereas they're not anxious at other times. That's more of a specific or situational anxiety, but not necessarily a phobia, as I'll talk about.
We have several types of both typical anxiety and, what's interesting, Parkinson's-specific anxiety. An episodic type of anxiety disorder would be something like panic disorder, where out of the blue, for no good reason, someone has a panic attack. You get worried and anxious, and then you have physical symptoms like feeling restless, facial flushing, et cetera. That occurs in Parkinson's independent of Parkinson's, but Parkinson's can also have symptoms that look just like that.
Situational anxieties include a phobia, being afraid to be in crowds, or being afraid to cross a bridge. As I mentioned, I've had several patients who, as they were in their late 50s or 60s, developed these claustrophobic situations where they couldn't sit in a crowded church. They would become extremely anxious.
Some anxiety conditions are continuous, things like generalized anxiety and PTSD, where someone can have symptoms such as worrying about what to worry about, which is what we see in generalized anxiety, or being vigilant about things that might be happening to make you anxious. Then we see these PD-specific conditions, and that's something we've really become aware of over the years. It took a while to convince the neurologists that we were seeing these conditions in Parkinson's, and I'll talk about that a little bit later with some other slides. It's important to think about these PD-specific conditions. They're relatively common.
Laura Marsh 00:34:03
In our sample of 250 patients, 22% of those who were affected had anxiety disorders that really didn't fall into the usual categories, and that's when we started calling them PD-specific. Others have had 11%. We've now developed Parkinson's-specific anxiety scales that can be used to evaluate anxiety in PD. All of the other ways that we had to evaluate it didn't really apply to Parkinson's, so we often wouldn't even detect anxiety. If you're doing a panic disorder scale and it's not asking about off-related symptoms, you're not going to necessarily pick that up.
In looking at anxiety disorders in particular and how to distinguish them from depression, it's important to look at what the particular features of anxiety are. Often, they can be overlooked, and people say, "Oh, it's just a depressive disorder." But a person with an anxiety disorder in the absence of depression is not going to have the sadness. They're not going to feel like they're not worthy. They're going to be interested in things, and they're not going to have those morbid thoughts or guilt. What they do have is apprehension. "Should I bring 13 Kleenex to the appointment, or should I bring 12 Kleenex?" They anticipate the negative.
If I go do this, something disastrous is going to happen. I'm not going to be able to get in the parking lot and get to the appointment. They can be overly detailed, pretty reactive to things, fearful, and have a lot of somatic concerns, thinking about their body. The complaints that people will have when they're anxious about their Parkinson's may actually be greater than what the clinician would observe on their exam. Sometimes what happens is people are getting extra Parkinson's medicines because they're having physical complaints, but that's really part of their anxiety. It's really important to make sure that anxiety gets addressed.
What is the trickiest part? I put the stars here with avoidance because that's what often people don't realize about anxiety. If you're anxious about something, the best way to not be anxious is to avoid what makes you anxious. If you're afraid to go out, you just stay home. Someone says, "Are you having any problems with anxiety?" The patient says, "No," because they're not doing what makes them anxious. We often have to ask very carefully, "What is it you're avoiding or not doing because you're feeling more anxious?" This avoidance is what, for example, often keeps people who have PTSD from coming into treatment. Why would you want to spend time talking about what's making you terribly anxious? We really look for this avoidance. That's something that I think often leads to overlooking anxiety or missing that diagnosis.
Another condition is apathy. About a third of the time, it can be part of a depressive disorder. Ten percent of the time, it can just be on its own as an independent disorder. What you see, again, is loss of motivation, emotional indifference, and a reduction in taking part in activities, not because they can't due to their Parkinson's or intellectual difficulties, but because they just don't have that motivation or inclination. It can be associated with cognitive changes. The big thing about apathy is that the patients who have it don't complain. They're apathetic about it. It's usually the family that complains. "My husband won't do anything. He sits around all day. He's not interested in it. He's not unhappy. He'll go wherever if I bring him along, but he's not motivated like he used to be."
Another problem that we see quite commonly in neurological conditions, and you see it in up to half the patients with Parkinson's, is something that we call emotionalism or pathological crying. You see it in depressive disorders when they're more acute until they're treated. You can see it when someone has delirium or a confusional state. You can see it when people take certain kinds of benzodiazepine-type medications, like Valium. What you see here is this heightened, excessive sentimentality that's very brief but often brings tears.
Laura Marsh 00:38:39
Someone says it's like if someone does a kind deed, or if someone thinks about their grandchildren or their love for their family, they'll have very sudden tears that then go away very quickly. It's not really a sustained emotional state. It's inappropriate. The person is often embarrassed by it, and they don't have any control over it. Some people will think, "I must have a depressive disorder. I must be depressed because I'm crying all the time." But what you don't see in people who have this emotionalism in the absence of a depressive disorder are all the other changes, like feeling worthless or not wanting to be alive. You just see these very quick, brief tears that are often embarrassing.
Parkinson's psychosis consists of hallucinations and delusions. I want to first talk about the overall presence of it. It really depends on your definition of psychosis. It depends on who has Parkinson's in your study and who has some other condition that looks like Parkinson's, like dementia with Lewy bodies, or whether they have cognitive impairment. The overall rates are about 8% to 40%. Over time, symptoms will become more persistent and progressive, but there's something that I think is incredibly important to look for and talk about with your clinicians if you notice any of these. Certain medicines with Parkinson's, like dopamine agonists, can increase that risk, certainly as people age with the progression of PD.
Looking at hallucinations, a hallucination in its simplest definition is a perception of something without something actually being there, without a stimulus. You can have them in any sensory domain. Visual hallucinations are most common in Parkinson's, but hallucinations can also be auditory, through your ears hearing something, or tasting something, smelling something, or feeling something touch you. In other psychiatric conditions, it's more common to have auditory hallucinations. In Parkinson's, it's most common to have visual hallucinations.
We talk about various types. One is called minor hallucinations. They're not technically hallucinations, but it's a sense of presence, this vivid sensation that someone else is there. Someone will say, "My brother has been deceased for five years, but often I feel his presence sitting in a chair next to my bed at night." It's brief, it occurs, and it's often not disturbing to people.
Passage hallucinations are brief visions in one's peripheral field, seeing someone walk by or maybe seeing a cat walk past the door even when you don't have a cat. Illusions are sensory distortions. It's where you might look at the curtains and the way they're blowing at night, and it looks like maybe there's some other kind of animal or a bear showing up in there. You have a distorted sense. Then with hallucinations, someone can have insight or not have insight. Often when you first see something that's a hallucination, you don't have insight, and you have to check to see, "Okay, is that really there?"
They can be unformed, like a puffball that just floats around, or they can be more formed and complex, like a little girl sitting at the end of the bed. Sometimes people have seen entire groups of people out on their lawn. As I mentioned, they can be any sensory domain: taste, or a sense of your physical sense of where you are in space, which are kinesthetic hallucinations.
Laura Marsh 00:42:44
It's important to know what the rates of these are. These are people who are treatment-seeking for hallucinations or delusions. A delusion is defined as a fixed false belief that the person has despite any evidence to the contrary. They're going to believe that no matter what. You can't convince them. You can't talk them out of it. Hallucinations, as I mentioned, were most commonly visual. In this particular treatment-seeking sample, almost 100% of the folks had visual hallucinations, about half had auditory hallucinations, a quarter had tactile hallucinations and could feel something touch their skin or something crawling on it, and another set had olfactory hallucinations, smelling something that wasn't there.
The delusions in this sample were about 76%. Most common were the idea that someone was stealing something or that they were not in their own house. One symptom that's very common is beliefs about spousal infidelity. This is often very difficult for family members to handle. If you're taking care of your loved one and they maintain that you're actually having a relationship with someone else, it's very, very hurtful. But this is something that does occur as part of the psychotic syndrome. Others may actually believe that their spouse is not who their spouse is, that there's an imposter coming in: "You look like Jane, but you're not Jane."
Last, I wanted to go over these PD medication-related mood syndromes. I mentioned that earlier when I talked about the different types of anxiety. One is something called off states or early morning off. A person wakes up in the morning and has extreme anxiety, extreme low mood, and often along with that some urgency with their urine, some drooling, or numbness and tingling, or paresthesias. This is something that people can have. When you have that, the treatment is actually to figure out how you can not wear off. It wouldn't be to treat a primary anxiety problem like panic attacks. It's really important to sort that out.
Dopamine agonist withdrawal syndrome, or DAWS, is where people are coming off a drug like Requip or pramipexole and they start having new-onset panic attacks, particularly anxiety. They can even have severe depression or suicidality. I've had several patients who've had drug cravings for dopamine agonists that really ended up looking like substance use. One patient actually admitted himself to a substance use program, and he said, "You know what? I didn't think I belonged here, but I realized all the things I'm doing for my Mirapex are the same as what these folks are doing for cocaine." It was a very enlightening statement that he made.
Then there are folks who have these on-off motor and non-motor fluctuations. That's this roller coaster ride where people start taking their medicines in the morning, say six o'clock. Their mood is okay, not great. Maybe they have that early morning off. As the day goes on, the yellow is their Sinemet, so they become neutral in mood and neutral motor, then become dyskinetic. But then their mood goes back down when they wear off, and then it goes back up as their motor symptoms get better controlled by the medicine. If I see you at noon, you're looking pretty good. Your Parkinson's is controlled. Your mood's pretty good. But by 3 o'clock, your Parkinson's medicine has worn off, and your mood is going down to the pits there.
Patients often don't recognize this difference, but their families definitely do. You have this fluctuating mental state that's like a roller coaster ride. People get very depressed or anxious with the fluctuations in their motor situation. Along with those fluctuations, you have these autonomic symptoms: drenching sweats, hot sensations, flushing, things like you might see with a panic attack. A male patient of mine said he developed menopause at his age. These are the autonomic symptoms he was having. People can also experience, during those motor off periods, slowed thinking along with anxiety and other sensory symptoms.
Laura Marsh 00:47:08
Next and last, we have these impulse control and behavior disorders, which can occur. Certainly, they're associated with medications, and I mentioned compulsive medication use in that setting. Individuals have developed gambling problems, hypersexuality, pathological shopping, and then punding, which is a behavior where someone does a needless activity over and over again, like taking apart flashlights and other mechanical equipment and then putting them back together again, or taking books off the shelves and fiddling with things, spending a lot of their time doing that.
What are the treatment approaches and options? What I want to emphasize is that mental health treatments are only effective when they're pursued, and sometimes you have to get the whole course too. You can't just do it one time. It's something you've got to stick with. We want them to be targeted, individualized, and collaborative. We often use multiple interventions and multiple disciplines involved in those interventions. It might be medications, talk therapy, or rehabilitation therapy of various sorts.
I'm going to give you an example of what I might do. Here's a 70-year-old veteran. He has Parkinson's disease, a history of PTSD, a history of major depression, which is not active right now that I can tell, and a history of alcohol use disorder, but it's not a problem right now. Suddenly, he comes in with new-onset panic attacks. I'm looking at my possible treatment options. The first thing we do is collaborate to try to figure out what he's actually having. I ask him to take a 24-hour diary and do this for about a week. Record hourly what's going on with your mood, what's going on with your anxiety, whether you're sleeping, how your motor symptoms are, whether you're taking your medications, when you're taking them, and what the circumstances are.
If a person who makes you anxious is coming in when you have these panic attacks, the treatment is going to be different than if you're actually having non-motor fluctuations, like I mentioned. These are folks who maybe are a good candidate for deep brain stimulation. But I don't want to start treating you for panic attacks if all we need to do is make sure we set a timer so you're taking your medications on time.
We spend a lot of time educating and supporting, getting a healthy medication and daily schedule. We do various behavioral interventions and some stop-gap approaches, breathing in particular. It's totally free. I love it. It helps whenever you're having anxiety. Distracting activities, mindfulness training, physical therapy, and physical exercise, as we mentioned, can be very helpful. Then we might do specific psychotherapies, cognitive behavioral therapy, or maybe a PTSD-specific therapy.
Then we will look to see whether maybe we need to adjust an antidepressant if there are depressive symptoms. Maybe we need transcranial magnetic stimulation or even ECT. Maybe we need alcohol use disorder treatment because the alcohol use problem has come back. It's much more than just saying, "Take a pill. We're going to get you on this antidepressant." That's kind of the last thing that we do when it comes to treating patients with Parkinson's and their mental health issues. We kind of do everything before that.
Laura Marsh 00:50:36
That's where I came up with this idea. I was talking with a veteran one time, and he said, "I just want to take this medicine. What do I do with this? Do I take two of them? Do I take three of them?" I was thinking to myself, this is kind of a mess. The idea is, if your treatment is a MESS, you won't be a mess. The acronym is Medications or medical, Education, Skills, and Support. You need all of those.
The M is for adjusting, adding, optimizing, or actually taking the medications you're prescribed. Often, especially with psychiatric problems, people don't take the medicines. They say, "I took it for three weeks and I was better, so I stopped." Of course, you're going to get worse again then. We want to adjust and do all those kinds of things, and then avoid certain medicines that tend to make people worse: benzodiazepines, antihistamines, drugs that are anticholinergics, things like Detrol, and even anticholinergics that some people take for their Parkinson's. Over time, they're not a good idea because they affect memory and cognition.
Education, just like you're doing today, means learning about your Parkinson's and learning about your symptoms so you know what you're dealing with. Lifestyle interventions include looking at your home and identifying what you can do to make your home safer and more compatible with who you are now. Learning certain skills is important. Psychotherapy is about skills learning. It's work. I don't make you better just by listening to you. It is learning skills that can help you manage symptoms and prevent those symptoms from coming back, just like you do when you go to rehabilitation therapies, physical therapy, occupational therapy, speech therapy, et cetera.
What I love doing is having people go into the home and see how they really are doing things and where their problems come up. Last, and it's so important, is social support: support groups, plus exercise, plus fun. That's key. Support, exercise, fun. Things like singing, dancing, yoga, et cetera. Make sure that the other people around you are also getting that support.
I added one more. The more I work in the VA and with veterans, you also have to be attentive to safety: safety related to falls and safety in terms of harm to self or others. I won't talk about falls because we're talking about mental health issues, but I can say that once someone falls, there's also a cascade of mental health issues that come. I spend a lot of my work with the patient making sure their fall risks are addressed and prevented as much as possible.
Laura Marsh 00:53:00
The other safety issue is looking at suicidal ideation and suicide behaviors. It's not insignificant in Parkinson's. In one study, almost a third of people had thoughts about death a lot, some people had suicidal ideation, and 4% had a lifetime attempt. We don't have any evidence that deaths by suicide are any different than the general population, but we haven't looked at that specifically in veterans. What we do know is that when people have major depression, they are more likely to have suicidality, and they can be at greater risk of harm to themselves in that context. Since major depression is common in Parkinson's, we definitely want to make sure we treat it and treat it until it's better, until it's remitted, not just until it gets a little bit better.
When someone has risk of harm or violence to others, of course it can also increase when there are hallucinations, delusions, or cognitive impairment. Safety and suicide prevention are really important. One of the things we do in particular at the VA is something called safety planning, and you can ask your clinicians to help you do that. You can find one online, but typically we do this with the veteran, where you become aware of what your distressing triggers are, symptoms or thoughts, things that are internal to you that only you know about. You can think, "That little symptom or thought has come to me, and when that happens, I'm going to do this."
If things continue on and bubble up, maybe you need to do a little more if that internal coping strategy hasn't taken. Maybe you need to think about, "What else could I do? Maybe I need to go to a movie or listen to some music. Maybe I need to contact a trusted friend who knows what to do." We're really looking at avoiding crises. So often, mental health treatment has focused on waiting until someone is in the crisis. What I want to emphasize with Parkinson's is that part of your advanced safety planning is identifying these conditions very early on so they can be managed and you don't have to get to the crisis.
For suicide prevention, remember that time and distance are on your side. Many people who end up dying by suicide, or who have attempts, have attempts that occur within an hour of when they first had that thought. Time can go on, someone can distract you, or you can't get to whatever your means of attempting to harm yourself are, and you are less likely to act on it. If you're concerned about someone, whoever it is, you want to stay with them for that time or until you know that person is safe. We do something clinically, and anyone can do this. It's lethal means counseling and finding out whether someone has weapons in their home or what other means someone might use to harm themselves.
Laura Marsh 00:56:07
Whether it's medicines that they might try to take an overdose on or some other way that they might try to harm themselves, we try to prevent them from having that available to them. We really, really recommend using gun locks and having them for routine safety just in general. People have children around their homes, etc., but also when somebody is in more of a worse state, to temporarily remove those weapons from the home. Of course, the most important suicide prevention measure is to treat mental health conditions, and in the VA, we have specific psychotherapies that we use for suicidality.
In fact, we're doing them with the group up in New Jersey that works on Parkinson's-specific therapies. Then there's the Veterans Crisis Line, which is available to anyone. You don't have to be getting your treatment at the VA. When you get these slides, if you would like to get some gun locks, you can email Corey Terhune, and he can send those to your house. The key thing is, a locked firearm can mean the difference between a tragic outcome and a life saved.
Just to finish up with talking about mental health issues, we know that mental health issues, like any other medical condition, can impact your overall physical health and well-being. Your Parkinson's symptoms will get worse. Your cognitive symptoms get worse, etc. But your clinician may not realize your mental health issues are important or relevant if you don't bring it up or if you look pretty much the same as usual. Many won't ask. It's kind of a don't ask, don't tell. Well, we want to be telling. If you have concerns that you want to address, bring those up first.
Some people use this phrase: it's called the hand-on-the-doorknob sign. As the person's getting ready to leave the room, they say, “Oh, by the way, doctor, I think I'm going to be, you know, not feeling like I want to keep living.” We want to bring that up very first so it can be addressed. You don't have to wait until you have an appointment weeks to months away. Call if you're experiencing changes. Often they're not actually related to mood disorder. As a geriatric psychiatrist, it's very common to identify urinary tract infections or a side effect of medication that has affected someone's mental state. It's not just their mood disorder or whatever else I'm treating.
The best practices really involve regular screening for mental health symptoms. I know VA and most other places will do regular depression screening, but if you have anxiety, that might not get picked up on the depression screen. If the tool isn't picking up on the problem that's keeping you from having the life that you should have or want to have, then you need to bring that up. Some other tips for starting a conversation, really, again, mainly just say it if you don't have another way, but you can always call ahead of time and say, “I want to make sure that Dr. Marsh knows I want to talk about this.”
There are families that would send me emails or call the clerk and say, “I can't be at the meeting with John, but this is what I want you to know about him.” Often we talk about people having an informant or collateral information, and knowing who that person is for you so that they can speak up for you if you're not feeling comfortable.
Laura Marsh 00:59:43
Now, one of the things that's so important about VA right now is they've really, as Patrick mentioned, the VA Whole Health program. That is a way that they will definitely be asking about how you're doing, how your mood is. This is promoting these whole health principles focused on the patient's goals and looking at not necessarily saying, “Oh, I would like to get my depression treated so that I only have a bad mood three out of eight days,” or something. No, this is about, “I would like to be able to go on a trip to the Caribbean on a cruise, and I want to have the best time possible.”
The purpose of Whole Health is that you would be working on what it is you need to do to do that. The goal becomes something that's more about your life and your whole health rather than just about symptoms. We practice that in psychiatry as well. The components of Whole Health are really you, your self-care, things that you do, your professional care and also your community, which is why I love the fact that we're doing this program that's involving the VA, the community, Parkinson's Foundation, you and other professionals.
Again, this is just the idea. You're in the center of your care and being aware of what's happening with you, aware of your body, your personal development, your nutrition, etc. Just to summarize, I've talked about mental health conditions and symptoms. They occur over the course of PD, including before it's diagnosed. We need to be thinking about that. We need to recognize there's a variety of mental health conditions, each with distinguishing features. You can have more than one. Each gets its own treatment, and when treated, there are many options and approaches. The overall experience of Parkinson's will improve, and people live a better quality of life.
At VA, we have a number of resources: outpatient care, psychotherapy services. We have psychotherapists who are specifically trained in working with Parkinson's disease and that are doing that virtually with us down to Texas and getting folks treated. We have additional resources if someone needs to be hospitalized. We have vocational rehab, homeless services, etc. We have a lot of resources. It's really wonderful to work at the VA where I feel I have unfettered abilities to take care of people.
We also have Veteran Service Centers for veterans of combat zones or who've experienced any sexual trauma. That's another place to go for counseling or to have your family come in. They can also work with the VA and coordinate, but your care can also be separated. I believe that's it for me. I will end my slideshow. Thank you.
Tracy Weistreich 01:02:27
Thank you, Dr. Marsh. That was fantastic. Your coverage of the different symptoms and the ways that they present in possible co-occurring mental health conditions has generated a number of questions.
Next, we're going to hear from Gretchen Glenn, who will answer some of the questions we got through the chat box about service connection and evaluation. Gretchen is a social worker and associate director of education of the Philadelphia VA Parkinson's Disease Research, Education and Clinical Center, or PADRECC, as I mentioned earlier. She's also at the Corporal Michael J. Crescenz VA Medical Center and chair of the National VA Parkinson's Disease Consortium Education Subcommittee.
Gretchen Glenn 01:03:09
Hello, everyone. I'm trying to find where I can see these questions.
For those of you who may not know, Parkinson's disease and parkinsonism are considered presumptive service-connected conditions for veterans who served in the Vietnam era and were exposed to Agent Orange. You must have a Parkinson's disease or parkinsonism diagnosis before you can file your claim. That was one of the questions.
It's also a presumptive service-connected condition for veterans who were stationed at Camp Lejeune due to the water contamination, and also for veterans who may have moderate to severe traumatic brain injury diagnoses. If you feel that you fall into any of those categories, you should go on to the VA website, and I'll post it in the chat box so that you can all see it, so that you can see where and how you can go about filing a claim for service-connected benefits through the VA.
To be eligible, this is just a side note, to be eligible to receive care at a PADRECC center for your movement disorders, you must be also registered for VA healthcare already. Be within the VA healthcare network and receiving care. I can post those links as well for those who may be interested.
Sorry, I'm reading, making sure I didn't miss anything. Those are the only instances that I mentioned before about Agent Orange and Camp Lejeune. There may be other instances as more research goes on that the VA may service-connect for other veterans of other eras. The best thing that I can suggest doing in the meantime is connecting and doing an environmental health registry evaluation at your local VA. I can post that in the chat box as well. Basically, that's an examination that's done at the VA that you might have concerns about being exposed to certain toxins, such as burn pits, which is a big one.
Some of the other different gases that you may have been exposed to. If in the future, it's good for the VA to have that information for research purposes, and then if in the future they become presumptive service-connected for Parkinson's disease, they would reach out to you to let you know. I can post that in the group as well.
I think that may have answered the questions. I don't know if anybody saw any others in the chat that you might want to point out to me if I missed them. You could also send a message to the Parkinson's Foundation directly if you have any questions about registering for VA healthcare or Agent Orange, and the Parkinson's Foundation can send them to me afterwards and I can answer them in email form. Thank you.
Tracy Weistreich 01:06:27
Thank you, Gretchen. We will use the rest of the time, approximately 20 minutes, for the questions that came through the chat. Coming together to answer your questions are Dr. Laura Marsh, Dr. Patrick Welch and Amanda Janicki. Amanda is a licensed clinical social worker and Parkinson's disease information specialist on the Parkinson's Foundation Helpline.
Our goal during this Q&A is to provide broadly applicable information and resources so that you feel empowered as you navigate the available resources and services options. Please understand that given the complexity of today's topic, we won't be able to respond to every question or scenario that was submitted. If we did not get to your question or you think of a question after the presentation, you can contact the Parkinson's Foundation Helpline at 1-800-4PD-INFO. That's 1-800-473-4636.
Thank you so much. At this point, we're going to turn it over to Amanda for the first question. Amanda, can you tell us about some of the resources available through the Parkinson's Foundation for veterans and care partners? Where would you direct people who are looking for information about managing symptoms?
Amanda Janicki 01:07:45
Sure, thank you. My first suggestion would be to call the Helpline. We can do some of the legwork for you in terms of finding the most appropriate or relevant resources, so that would be my first suggestion.
Otherwise, our website does have a lot of information in different formats. If you're someone who likes to listen to something or watch something, we have podcasts, we have webinars, we also have a lot of reading material, free booklets we can send you on the topic of mood. So, website, Helpline. We also, as far as care partners go, do have some courses specifically for care partners. That would be something else we can guide you to. I'd say reach out to us and let us do some of the hunting for you to find some resources that really would make an impact for you depending on what your situation is.
Tracy Weistreich 01:08:35
Thank you. Patrick, the next question I have is for you. What would you say to a veteran who is thinking about reaching out to VA for mental health support or who may be experiencing depression and/or anxiety?
Patrick Welch 01:08:53
Thank you, Tracy. I think the first thing is the realization that a person has, you have to acknowledge that you do have an issue. I would suggest two ways of looking at it. First of all, if you are a combat veteran, reach out and find a Vet Center in your particular area. The Vet Centers are staffed by combat veterans, and the information that you discuss at a Vet Center is private. I like to call them the little VA.
They're usually in a strip mall or something like that, as opposed to the big VA, which is multiple-story buildings. The second thing would be to go to the VA. If you're not registered with the VA healthcare system, go into the service center at the VA medical center, bring your DD214, get registered with the VA, and then in that meeting with the service center people, they will be able to assist you in setting up an appointment with a clinician.
There's also the OIF/OEF offices in many of the medical centers, which is another place for someone to go. So, there's three or four different areas for a person to get involved in the VA healthcare system.
Tracy Weistreich 01:10:20
Thank you so much, Patrick. We'll make sure that those resources are available to the listeners today.
Dr. Marsh, can you talk about the possibility or probability of a veteran of the Gulf War and Iraqi Freedom and other campaigns throughout the last 20 years developing Parkinson's due to their service in these overseas locations?
Laura Marsh 01:10:41
Yes. I've been checking out the questions, and I'm really impressed with the depth of them. They're excellent. That particular question is something that we are asking at our VA and looking at longitudinally. There are certain things that... There are plenty of people who went to Vietnam or who will go to Afghanistan or Iraq who do not develop Parkinson's. It's not everyone who gets it, but there are other things that increase one's risk of having it. We know that if someone has had a head injury, that's associated with increased risk of Parkinson's.
We know that people with anxiety disorders appear to have increased risk. I'm going to add in this other question, which is about the dreams and the nightmares. One of the things that has been fascinating to me is I work on the sixth floor and our neurology clinic is on the second floor. We were finding that people who came up to the sixth floor were diagnosed with PTSD because of their nightmares. On the second floor, they were diagnosed with REM sleep behavior disorder, which is this condition where you have nightmares. Normally when you're dreaming, your muscles don't move.
When you have REM sleep behavior disorder, you get up and you're able to have muscle tone. We don't always know, and this is a question we're asking very specifically: what is that overlap between REM sleep behavior disorder and patients with PTSD? When we look at people who have REM sleep behavior disorder, we know that REM sleep behavior disorder increases the risk of someone having a synucleinopathy, or what I mean is someone with Parkinson's kind of brain pathology.
Laura Marsh 01:12:37
A head injury and REM sleep behavior disorder are two things that might be part of it. Does that mean that you're going to get Parkinson's? Not necessarily, but it's something that we want to be monitoring for. However, in addition to monitoring, if you have symptoms of any mental health issue, you don't have to wait until you have Parkinson's to get treated. Because what we also don't know is if we treat your psychiatric problems when you're 40 and you exercise and you have good nutrition, can we actually stave off the processes?
Any kind of disease, what happens, as you saw on that slide where I had, you've got all these other parallel processes that are going on in your brain that are helping you to compensate. Well, what if we shore all those up? Just like you're in combat, right? You're not going to have just one team going in; you're going to have all kinds of approaches.
Maybe what we can do is either prevent that transition to actually having full-blown Parkinson's, that would be the idea. You could be reversing the disease process, or we can slow that disease process. That's really why early identification, early screening for symptoms, identification, recognition and early interventions and treatment.
Actually, with Patrick Welch, our veteran who's here, I wondered if maybe because he was getting his depression treated at the VA and getting it treated very effectively and getting his PTSD treated at the VA very effectively until he started having the diagnosis of Parkinson's, maybe if he hadn't done that, he would have developed his symptoms earlier. I'm just speculating. But I think this is why I really encourage everyone to, if you have these psychiatric symptoms, get them treated.
Tracy Weistreich 01:14:37
Thank you, Dr. Marsh. Turning to Amanda, does the Foundation have any specific resources for veterans who are recently diagnosed with Parkinson's?
Amanda Janicki 01:14:48
We do. We have a newly diagnosed kit. That's one resource that we can mail out to you that's specific for people newly diagnosed. Several of our webinars, educational webinars and other booklets are really relevant. We would be glad to get you in touch with that.
Again, touting the Helpline, but we get so many calls from people that have just been diagnosed, and they don't even sometimes know what to ask. What do I start with, with this new diagnosis? They're trying to wrap their head around it. We can talk with you through that and get a sense of what are your concerns, and let's answer some of those questions, and let's connect you with local resources so that you're starting to build your local community.
The answer is yes, we do have some newly diagnosed resources, a special page on our website that's just dedicated to people newly diagnosed. We have some tips on our website actually written by someone with Parkinson's for someone newly diagnosed. There's a lot out there for you to find on our site or for us to guide you to.
Tracy Weistreich 01:15:51
Does that include information for loved ones or caregivers of veterans diagnosed with PD?
Amanda Janicki 01:15:58
Absolutely. There's a whole caregiver section on our site. Some of it's specific to people newly diagnosed. But same thing, our site's got a lot of info, but I say call us. Let us know what's on your mind. Someone's just been diagnosed. And like Dr. Marsh said, you don't have to wait for a crisis. Call us when things seem okay, but just to get a sense of what to expect or to feel a little more prepared, a little more confident, so that you know what's out there, what resources are available to you.
Tracy Weistreich 01:16:27
Thank you. Patrick, can you tell us about the things you do to raise awareness about Parkinson's within your community and why this work is so important to you?
Patrick Welch 01:16:39
I got involved with the Parkinson's issue even before I was diagnosed with it. A female fellow veteran had called me one time and asked me what I could do to help in her struggle with Parkinson's because she knew of my advocacy work. So, I began doing the research, as I mentioned in the piece that I did.
What has happened now is I've taken my advocacy to new levels. I've gotten involved with our local media. We've had our Buffalo News, in what they call their Refresh section of the newspaper, do a feature story on Parkinson's disease and veterans with Parkinson's disease. We've had radio stations doing interviews with me, giving me an outlet there. I'm offering to speak at any programs where people want to hear more about Parkinson's disease, what it does to veterans and what the VA is doing to assist veterans in those regards.
Tracy Weistreich 01:17:43
Thank you. That's amazing. I also had received a question that asked about the use of VA Whole Health Services, which for those of you who don't know, include things like tai chi, yoga, mindfulness and weight management. Patrick, can you talk about how you learned about these programs, as well as the impact they've had on your PD management?
Patrick Welch 01:18:05
Yes, I serve on the medical center's director's advisory board. I've served in that capacity for about the last 30 years through many different directors. We have presentations at our bimonthly meetings where different departments of the VA come in and tell us what they do. We had the lady who runs our Whole Health program come in and do a presentation. I got involved with her in finding out exactly what Whole Health does, what I thought might benefit me.
We're having those discussions, and I'm looking to get enrolled in. I've done tai chi in the past. One of the things, because I've got leg injuries, I can't do a lot of yoga stuff, but they have a chair yoga program that, for people with disabilities like I have, is also a very good thing to do. We're also publicizing that. Then the auxiliary area that is run is for the spousal support out of the Whole Health department, where they get engaged in providing information to the spouses of people with Parkinson's disease and help guide them in how to care for that person. It's been a very, very good experience. They're very knowledgeable, and they do a very good job.
Tracy Weistreich 01:19:30
Thank you. Final question to Amanda. Are these services, or are there services available to veterans who have Parkinson's disease but who are not combat veterans?
Amanda Janicki 01:19:44
Yeah, absolutely. Let us know what you're looking for, what would make your life easier, more enjoyable, lighter, more connected, and we'll help you find what resources might be out there. Like I said earlier, we'll do some digging for you to see what makes sense for you and try to partner with the VA if we can, see what the VA offers. There's a lot out there, and with things being virtual nowadays, there's so many more options that if it's not available locally in your community, you might be able to access it online. I would say yes, and just reach out and let us know what you're struggling with, what you're thinking of might help, or we can help you with that.
Tracy Weistreich 01:20:25
Thank you so much. In fact, thank you so much to Dr. Marsh, Patrick and Amanda for the information that you've shared here today. Thank you to everyone for viewing and participating in today's webinar. We know that additional questions have come in, and while we were not able to answer them live, we will follow up with you to ensure that your questions are addressed.
Before we wrap up, I'd like to highlight a few resources that are available. Specifically, the Parkinson's Foundation resources that you see on this slide. Make sure to visit parkinson.org/veterans to learn more.
On this slide, we have some additional information that is available through the VA. Be sure to go to parkinsons.va.gov to learn more information about the resources you see on this slide.
Finally, once we close the webinar, an online survey will pop up on your screen. Your feedback is extremely important to us and helps us improve future webinars for the veteran community. You can even suggest future topics. We're very open to listening to what you have to say.
Once again, this webinar is being recorded and will be available for viewing early next week at parkinson.org/va2022. You will also be receiving a link to the recording via email. Thank you for being with us today. We look forward to connecting with you again very soon.
