Crista Ellis 00:00:01
Hello and welcome to the Parkinson's Foundation's webinar, Veterans and Parkinson's: Managing Anxiety, Depression, and Apathy. I'm Crista Ellis, your host for today's webinar. Helping me behind the scenes are my colleagues Jenny Fearday, Danielle Agpalo, Laura Cameron, and Michelle Shepherd. We are recording today's presentation. You'll receive a follow-up email from us with a link to today's recording and other resources in the coming days.
The mission of the Parkinson's Foundation is to make lives better for people living with Parkinson's. Whether you are living with Parkinson's, caring for someone with Parkinson's, or working to end the disease, we are here to support you.
To achieve our mission, we pursue three goals: improve care for everyone with Parkinson's, advance research toward a cure, and empower and educate our global community. Today's program is a great example of one of the things we are doing to help us meet these goals.
The Parkinson's Foundation provides weekly education and wellness programs virtually through our PD Health at Home series, which includes Mindfulness Mondays, Wellness Wednesdays, Fitness Fridays, our Expert Briefing series, and Episalud en Casa. You can learn more and register for these programs by visiting Parkinson.org/PDHealth.
Part of the Foundation's commitment is to reach every person living with PD. A critical way we do that is through our partnerships. With more than 110,000 veterans living with Parkinson's, the Foundation is proud to have established a formal partnership with the Veterans Administration. This partnership has the overarching goal to improve the quality of life for veterans living with Parkinson's disease and their care partners through greater access to education, resources, and support.
Please visit our webpage and explore the resources offered by the Parkinson's Foundation that can support your navigation of living with Parkinson's as a veteran. That website is Parkinson.org/Veterans.
This year's webinar series for veterans is presented with support from the Don and Lorraine Freberg Foundation. We want to take this moment to thank the Freberg Foundation for helping to make these programs possible.
Today's discussion will focus on the managing of non-movement symptoms related to Parkinson's disease, such as anxiety, depression, and apathy. Our webinars for veterans will continue on October 26, which will offer tips and means of support to help us prepare for the future. To conclude this year's webinars for veterans, we will host our final event on December 14, where we will discuss how, for some veterans, environmental exposure and toxins can increase the risk of PD. You can learn more about these events and register to attend at Parkinson.org/Veterans.
We understand the vastness of navigating Parkinson's disease as a veteran, which is why we have designed this educational opportunity as a series. Today we will focus highly on managing anxiety, depression, and apathy. If you have a question outside of today's topic, please plan to attend one of our future events, watch an archived event, or contact our Helpline at 1-800-4PD-INFO to connect you with the resources you're asking for.
As we begin the formal webinar, please know that we are recording today's presentation. You will get a follow-up email from us with a link to today's recording and other resources.
I'd like to take this moment before we step into announcing our speaker. We have two watch parties in the area, one in the Syracuse area and also in Cherry Hill, New Jersey. I want to give a shout-out to the Katz JCC and the Ciceron Legion. Thank you for joining us today and uniting your community to join this live broadcast for our veterans.
Joining us today is Dr. Megan Gomez. Dr. Megan Gomez is a staff psychologist at the Tibor Rubin VA Medical Center in Long Beach, California. She provides psychological assessment and treatment interventions to veterans enrolled in the home-based primary care program and also provides psychology support to their family caregivers. She works primarily with veterans over the age of 65 who have chronic and complex medical and psychological conditions.
Dr. Gomez completed her first—oops, sorry, I lost my bio. Dr. Gomez, thank you so much for joining us today. Really appreciate you over there on the West Coast connecting with our veterans living with Parkinson's. Thank you so much.
Dr. Megan Gomez 00:05:00
Thank you so much. It's a pleasure to be here with all of you today. Thank you for making time to tune in to our talk. This is a topic that I know a lot of us are interested in, so let's go ahead and get started.
First, disclaimers. I am a clinical psychologist, meaning I have my PhD in clinical psychology, and I'm a licensed psychologist. I'm not a medical doctor, nor do I have prescription privileges. I have no financial disclosures to report, and this presentation is based on my professional opinions, which are based on research and my clinical practice.
A little bit about me. First, my grandfather had Parkinson's disease, and he and I were very close. He was diagnosed with Parkinson's when I was in high school, and I moved in with him and my grandmother as his Parkinson's progressed. I lived with him for the last seven years of his life, being a caregiver alongside my grandma to him. Parkinson's is a near and dear condition.
In terms of my professional situation, I got my bachelor's degree at USC here in Southern California, and then I went on to get my master's degrees in psychology and theology from Fuller Seminary, where I also got my doctorate. In terms of my work, I worked in several institutions here in the Southern California area. I did my postdoctoral training at Keck Medicine of USC in the neurology department, working with people with Parkinson's.
I've also trained at Cedars-Sinai, Rancho Los Amigos, which is a national rehabilitation center, UCLA, and I am currently at the VA in Long Beach, as was mentioned. Here is an outline for my talk for today.
I want to start by talking about the non-motor symptoms of Parkinson's disease and then describe what depression, anxiety, and apathy are, followed by the causes of these disorders, the impact on quality of life for the person with Parkinson's and also the family, and then finally discuss the treatment of depression, anxiety, and apathy. I'm going to breeze through these first two topics so that we can spend the bulk of our time together talking about the causes, impact, and treatment.
Non-motor symptoms of Parkinson's. We all know what Parkinson's disease looks like. We know those classic symptoms that are visible.
When I talk about Parkinson's, I'm talking about the whole spectrum. We know that Parkinson's disease is one of those that falls under that umbrella. There's also essential tremor, restless leg syndrome, dystonia, Lewy body disease or Lewy body dementia, PSP, MSA, and CBD.
We talked about those motor symptoms, what Parkinson's looks like, and of course, we know that there is a slew of non-motor symptoms involved in Parkinson's disease. These are the invisible symptoms that can be equally or more so distressing than some of those motor symptoms.
Dr. Megan Gomez 00:08:52
As a psychologist, I work with people to address those invisible symptoms, namely the cognitive aspects of Parkinson's, the mood symptoms of Parkinson's, anxiety, apathy, and the behavioral components. Of course, when we're talking about any of these, there's oftentimes so much overlap, and it can be really difficult to talk about one specific symptom when we know that there are oftentimes symptoms that go hand in hand or clusters of symptoms.
This is a non-exhaustive list of some of the non-motor symptoms that we see in Parkinson's disease. Of course, there are a lot of them. Some of the more common ones can be the sleep disturbances, sexual dysfunction, urinary dysfunction, pain, fatigue, and cognitive disorders. Today, obviously, we're going to focus on the anxiety and depression.
Let's start talking about how we define or diagnose these symptoms. The DSM is the book that has all of the mental health diagnoses. This is the book that we use to diagnose someone with any of these conditions. Taking a look at depression, you can see that there are quite a few depressive disorders. I'm not going to spend too much time talking about each one.
I think it's most important to talk about what these depressive disorders have in common, which is the sadness, emptiness, or irritable mood, reduced interest or pleasure in activities, and also somatic and cognitive changes that significantly affect the individual's capacity to function.
The differences between these depressive disorders are the duration, so how long the person has been experiencing the depressive symptoms, and also the timing. When did the depressive symptoms start, what was going on at that time, and also the cause? These differences help us differentiate which type of depressive disorder someone has.
In the general population, upwards of 33% of people will experience an episode of major depression at some point in their lives. The numbers vary in terms of people with Parkinson's reporting depressive symptoms. On the higher end, it can be more than half of people with Parkinson's will experience a depressive disorder.
There is, of course, a difference between being in a bad mood, which can last a couple hours, to having a bad day, to then meeting diagnostic criteria for a depressive disorder. Just because you have a bad day or a bad couple of days doesn't mean that you meet criteria for a depressive disorder. Usually, that would require you to have feeling depressed or down with those other symptoms that I mentioned for most of the day for at least two weeks.
There is a lot of overlap in depressive symptoms and Parkinson's disease symptoms, so it can be difficult to tease apart what is Parkinson's and what is depression. Some of those overlapping symptoms include difficulty concentrating, weight loss, fatigue, early morning waking, so maybe popping up wide awake at 2 or 3 a.m., and physical restlessness or slowness. These symptoms can occur in Parkinson's alone, in depression alone, or in both.
Dr. Megan Gomez 00:13:11
Let's talk about anxiety. There are even more anxiety disorders, and I want to also mention obsessive-compulsive disorder and trauma-related disorders, which are very tied to anxiety disorders. Again, some of the common features that we see in anxiety disorders would be excessive fear, and we can have those physical changes, right? That increase in heart rate, breathing, changes in our digestion, and anxiety disorders also have a thought component of feeling that there is immediate danger and withdrawing.
These disorders also have anticipation of future threat, which can cause muscle tension, vigilance, which is being acutely aware of your environment, and also avoidance behaviors. You may not be doing things such as watching certain movies, going to certain places, being around specific animals, or being around crowds. They also cause distress or impairment in functioning.
Differences in the anxiety disorders include types of objects or situations that induce fear or avoidance behavior and the associated thoughts.
In the general population, approximately 30% of people will have an anxiety disorder, and when we're talking about people with Parkinson's, that number can be as high as 55%. Again, just like with depression, just because you're nervous before maybe taking a flight, nervous before a doctor's appointment, or nervous before a date, and of course we all have stress, that doesn't necessarily mean that you meet criteria for an anxiety disorder. That would, of course, again entail the severity of those anxiety symptoms and the duration as well.
Depression and anxiety both have these four components to them. There are feelings or emotions that accompany these diagnoses. There are also thoughts, physical sensations, so things that are occurring physiologically in our body, and behavioral aspects that are changed as a result of anxiety and depression.
Apathy is actually not a diagnosis in the DSM, but it is something that people with Parkinson's can experience as a part of the depression or as a result of the reduced dopamine in our body. Apathy is defined as diminished motivation and reduced goal-directed behavior, decreased emotional responsiveness, and a lack of spontaneity, interest, or emotional expression.
Oftentimes, medical providers are hearing from family members that the person with Parkinson's has apathy. It may not be as common for the person with Parkinson's to report apathy, but it can be very concerning to the family. I have this picture here of this person sitting in the chair, and I hear often from wives that their husband with Parkinson's is content sitting and watching TV all day. They can get frustrated that the person with Parkinson's isn't having that pep in their step, isn't being that go-getter, doesn't have a list of goals that they want to do, and isn't being as productive as they once were.
Dr. Megan Gomez 00:17:21
The difference between apathy and depression is that whereas apathy is considered a disorder characterized by a reduction in self-initiated, goal-directed activities, depression has those elements of sadness or the loss of interest or pleasure in activities. I'm going to be talking and giving a lot more examples of these as we go on.
I provide clinical services at the VA, so I work with veterans one-on-one to help them address anxiety and depression when they have Parkinson's. I also work with family caregivers. Some of the common fears that I hear are that fear that something awful may happen, fear of losing control, fear of being a burden, and fear of being abandoned. Of course, with Parkinson's, it makes sense why people would have some of these fears.
Common feelings that veterans explain are feeling unhappy, having a loss of hope, loss of courage, or a lack of confidence, feeling annoyed, feeling irritable, or feeling guilty.
I often hear that the person with Parkinson's doesn't necessarily get that boost in mood when something good happens. Sometimes there's a belief that life is meaningless or they have extreme skepticism. One of the common examples I hear is that your doctor tells you to exercise, your family tells you to exercise, but sometimes the person with Parkinson's says, "What's the point of exercising? I have a neurodegenerative condition that's only going to worsen. Exercise isn't going to help me."
An unwillingness to speak or smile. Sometimes the veteran with Parkinson's can seem kind of despondent. Maybe they don't laugh at jokes. Maybe they don't present visually as approachable or someone who's in a good mood. Of course, sometimes that can be a result of the masked face, but sometimes it can be, again, a result of that lack of dopamine, which we're going to talk about.
Again, that loss of pleasure in activities. Maybe the person used to love to go watch their grandchildren in their sporting events. Maybe they used to really look forward to going to their games, and now they haven't been to a game in months. It just doesn't seem like something they're motivated to do.
Let's talk about the causes of depression, anxiety, and apathy for people who have Parkinson's.
On that list of depressive disorders that I gave earlier, one of the types of depressive disorders is due to another medical condition. That DSM that I showed you has specific mention of a depressive disorder due to Parkinson's disease. The reason for that is there is an abundance of research that shows Parkinson's disease has an impact on the brain, which causes symptoms of depression.
Dr. Megan Gomez 00:20:56
We know that because people with Parkinson's oftentimes will say that they experienced depression six years before they even received the diagnosis of Parkinson's. I think there sometimes is a misconception that people are depressed because they have Parkinson's, and it's a reaction to the diagnosis. But because those symptoms can be present before the diagnosis of Parkinson's, we know that that can be a result of the brain changes and the neurochemical changes that are occurring in the person who goes on to have that diagnosis of Parkinson's.
Depression is related to the direct physiological effects of Parkinson's disease rather than a reaction to the diagnosis.
We know that the prevalence of depressive symptoms is higher in people with Parkinson's than it is in other chronic and disabling disorders. When we look at conditions like multiple sclerosis, ALS, and Alzheimer's disease, people with Parkinson's have higher rates of depression. We know that, again, it's not just a reaction to the diagnosis, but it's in fact the brain chemical changes that are occurring.
Depression may result from the underlying disease process rather than solely a reaction to the motor disabilities.
Even though depression is very common in people with Parkinson's, only about 26% receive treatment for depression. We can talk and hypothesize about why that might be.
This slide illustrates the fluctuations associated with dopamine levels. A lot of us have heard about the on and off state in Parkinson's disease, where the peak is when our dopamine, our medication, is working at its best. The dopamine level is higher, and then we see that dip in dopamine.
It's important to remember that when a person is diagnosed with dementia, they have lost 80% of the dopamine in their brain. We know that the carbidopa-levodopa medication that we take increases the level of dopamine, but we only have that window of time where the medication is effective. That varies person to person based on a variety of different factors, some of which are how long the person has been on the dopamine or the Parkinson's medication and how responsive the person is to the medication. These fluctuations in dopamine are very important to keep in mind.
Dr. Megan Gomez 00:24:07
I also want to say that for a person who does not have Parkinson's disease, they have a reserve of dopamine in their body, right? Their brain is producing dopamine, and there are things that they do behaviorally that cause spikes in dopamine. Oftentimes, dopamine is thought of as the reward chemical in the brain.
I want to explain to people that yes, it's linked to reward, but there's also a spike in dopamine when a person without Parkinson's has a craving. For example, if I have a craving for water, I notice, wow, I'm really thirsty, and I get a spike in dopamine with the craving. We get a spike in dopamine when we want something. Then I immediately get a decrease in dopamine where I fall below regular levels, and my body and my brain do that intentionally.
I want something, I get this spike, and then I have a deficit in dopamine. The reason that happens is so that I feel pain. I feel the pain of wanting water and not having it, and that dip in dopamine is what propels me to go get a glass of water. That happens anytime we have a craving. Say I'm craving a cup of coffee. I feel that spike in dopamine when I feel the craving, and then I dip and I say, I really want a cup of coffee now. I have options.
I can go to the coffee machine and make a cup of coffee. I can get in the car and go to Starbucks and get a cup of coffee. Then my dopamine level rises again when I experience that consumption of the coffee, or the consumption of the water, or it can be anything. But I think it's really important to recognize that that spike in dopamine first happens when we want something. Then we get that trough of dopamine, which makes us move, motivates us to get what we want, and then we get the spike when we experience it.
For someone with Parkinson's disease, where they have a depletion of dopamine, it makes sense why they would have apathy. They're not getting that natural spike when they want something. In turn, it may feel like they don't care what they have for dinner. They don't go for that glass of water on their own. You sometimes have to tell them, cue them, remind them to get the glass of water.
Sometimes they don't have the desire to go out and get sunshine. They don't have that desire to exercise. If we think about the person with Parkinson's having that depletion of dopamine and not having that natural craving for something, it makes sense why they're more content or can be content sitting in a chair watching TV. Whereas someone without Parkinson's is constantly having these natural peaks and troughs in dopamine, which make you do things.
Dr. Megan Gomez 00:27:45
I'm going to talk about neurotransmitters a bit. We know that Parkinson's disease mostly affects dopamine, but it also affects the other neurotransmitters, such as serotonin, which is linked to mood and depression, and GABA, which is linked to feeling calm or feeling anxious. Again, a lot of times in talks, we try to oversimplify things to get our point across.
Neurotransmitters oftentimes work hand in hand, and it's hard to isolate just one. But I'm going to try, for the sake of the talk, to mostly talk about dopamine. Keep in mind that a person with Parkinson's can have disruptions in many of these neurotransmitters.
This illustration demonstrates where dopamine goes in the brain. There are different pathways in the brain that transport dopamine. The one on the top, the motor somatosensory, is responsible for movement. It is responsible for initiating movement and stopping movement, which are correlated with the motor symptoms of Parkinson's. Then there's that prefrontal pathway, the frontal-striatal circuit.
This is responsible for a lot of different things. Dopamine helps us regulate our body temperature. Dopamine helps us regulate our sex drive. Dopamine helps us regulate our impulses, so it can help us pump the brakes on some of those impulses that we have. We know that impulse control disorders are very common in people with Parkinson's.
That frontal pathway is also responsible for helping us think of context. There's always a time and a place for things, right? What we do in the bathroom by ourselves, we would never do if we were on stage giving a lecture.
Context is very important for helping us determine appropriate behaviors, when to do certain things, and when to not do certain things. In Parkinson's, that can be disrupted because that part of our brain is not getting the dopamine that it needs.
People who suffer with low levels of dopamine often experience hopelessness, worthlessness, and struggle to handle stress. These individuals will often isolate themselves from others and have self-destructive thoughts and behaviors. Again, this is for anyone who has that dopamine deficiency. There are certain medications known as dopamine blockers that, if I were to take, I would feel very down, very depressed, very pessimistic. Why bother? What's the point? This would happen for anyone who has that deficiency or depletion of dopamine.
Dr. Megan Gomez 00:31:23
The opposite would be someone who is on cocaine, for example. My stereotype of someone who's on cocaine, which acts upon dopamine, is that when we take cocaine, we get that flood of dopamine in our body. My stereotype of someone who's on cocaine is that they have a lot of energy and feel like they can take on the world.
They're very productive. They don't need a lot of sleep. They can have a lot of things on their to-do list and check them all off. That's someone with a lot of dopamine. The opposite would be someone without a lot of dopamine, which would be the inverse response.
Addiction and the brain, factors that influence addiction. We see a lot of addiction in people with Parkinson's. The reason being that reinforcement of certain activities. Sometimes people can get addicted to shopping when they have Parkinson's because they get that spike in dopamine.
A lot of times, people with Parkinson's won't get the spike in dopamine from little things, like a nice meal or a nice walk. Sometimes it takes something a lot bigger for them to feel that rise in dopamine. It may be going on a huge shopping spree, buying something like a new car, having sex, or doing something that would give that huge spike in dopamine because sometimes, when they're depleted, they need that huge spike.
We talked about motivation and dopamine and how dopamine can be huge in providing us with that drive and focus needed to get things done. Dopamine is also involved in the pleasure system, as I mentioned, and giving us that sense of continuing to do something even when it's hard.
Dopamine is released by behaviors. It's also a result of chemicals. Coffee releases dopamine. Cocaine, of course, does. Our Parkinson's medications do. Foods high in tyrosine do. Tyrosine is basically that L-dopa, so any type of food that's high in tyrosine would give us that dopamine effect. There are different ways of getting dopamine. But again, I want to hone in on that spike that happens when we crave something, and then we feel that deficit, the pain, which motivates us to move. Then we experience the high when we get to engage or indulge in whatever it was that we were craving.
Dr. Megan Gomez 00:34:27
We know that people with Parkinson's are basically getting those, not artificial hits of dopamine, but they're caused by the medication. They're not caused by behavior, right? It's almost like an artificial inflation of the dopamine at times because we're taking our medication. Most of us are taking the medication maybe every three hours, every five hours, and we're getting that rise in dopamine because we're taking the medication. The medication wears off, we take the medication, and it wears off.
It's very different for someone taking the carbidopa-levodopa or the Parkinson's medications when they're getting their spikes and it's not matching with their behaviors.
Dopamine again causes the pleasure and the pain, right? We get the pleasure when we think of something we want, we feel the pain of not having it. It propels us to take action. People with Parkinson's don't have that same rhythm of the dopamine. A lot of us understand that after a big experience where we have that surge in dopamine, like our granddaughter or grandson is born, we can naturally have a depletion of dopamine afterwards. That's the way our body is designed.
We get so much pleasure and excitement leading up to a wedding, and then sometimes people will feel that post-wedding blues, or the excitement of planning and going on vacation, and then when the vacation is over, we feel down. Or again, the shopping. I want to also emphasize that the planning gives us that rush of dopamine in people who don't have Parkinson's. When you do have Parkinson's, you don't get that excitement or anticipation when you're planning something.
When we think about just biology and nature, and this is an example of a tiger where they see their prey, right? They get that increase in dopamine, and then they feel like, I don't have the prey, which motivates them to go get it. They're looking at their environment to see, am I on the right track? A lot of times we look to our environment to tell us, you're on the right path, which keeps us going. Then we get the reward, right? In the tiger's example, it's they catch their prey.
It's really important to think about how this is disrupted in people with Parkinson's. It's disrupted because they don't have that craving, so therefore it's difficult to feel motivated to do an activity.
They oftentimes don't get the spike when they get the reward. Oftentimes, they get the reward, and they don't get that dopamine rush unless they just took their medication. It's like, why did I bother? For example, if we go outside and sit in the sunshine, sometimes we'll do it because we know it's good for us and we'll feel better afterwards. But sometimes the person with Parkinson's will go outside and they don't feel better afterwards because they don't get that dopamine spike. It can affect our desire for things.
It can also affect how we feel once we get something good, the reward that we want.
Dr. Megan Gomez 00:38:23
Dopamine and addiction. A lot of times people with Parkinson's have trouble with delayed gratification, right? They want it now because their brain is so deficient in dopamine. They want the things that will give them those quick dopamine hits, like sex, video games, pornography, substances, computer use, and social media. Those things give us those quick hits that we want, rather than putting in a lot of work and effort into something like exercising or doing something like planning a date night.
Those things oftentimes don't give us that quick hit, right? Sometimes with Parkinson's, like an addiction, we have that progressive narrowing of things that bring us pleasure. Sometimes we used to have a lot of interests, a lot of hobbies, a lot of things that would make us happy and bring us joy, and now it may feel like maybe one or two things make us feel good.
Again, just talking about what it is that makes us want to do something again. Oftentimes, it's knowing that we'll feel better after we do it. But sometimes that experience is stripped for people with Parkinson's. They go to physical therapy, they go to the gym, and they don't feel better after. So why would you do it? It makes a lot of sense.
Let's go ahead and take a break here, and then we'll talk about impact on quality of life and some of the treatments available. Okay.
Crista Ellis 00:40:07
Thank you, Dr. Gomez. This is a comprehensive overview of what we can potentially anticipate in the future of our progression of Parkinson's or perhaps what we're already dealing with. Thank you for offering that to us today.
Dr. Megan Gomez 00:40:20
Of course.
Crista Ellis 00:40:22
We did get quite a few questions from some of our attendees and lots of interest in the fluctuations. How are fluctuations associated, you know, fluctuations in symptoms, different for a veteran who has DBS, deep brain stimulation? Is that something that you can speak to?
Dr. Megan Gomez 00:40:44
Yeah. Again, I'm not a movement disorder specialist, but my understanding is that deep brain stimulation helps minimize some of those fluctuations. Rather than having those big peaks and valleys, the DBS can help it seem not as intense, those highs and lows. Of course, people don't have to take as much Parkinson's medication. I think the goal or the hope is that DBS can reduce the magnitude of some of those fluctuations.
Crista Ellis 00:41:20
Thank you, Paul and Alice, for that question. I hope you got the answer you were seeking. Charlotte is asking us, is it useful to do a test of dopamine levels every now and then just to assess non-motor symptoms, having that level of dopamine baseline understanding and how it's changing?
Dr. Megan Gomez 00:41:40
Yeah, good question. I know the DaTscan can help us see how much dopamine is in your brain, and oftentimes that's used as a diagnostic tool to help inform the Parkinson's disease diagnosis. I don't know if people regularly can check that or if that would be covered by insurance, but it would be very interesting to see. There is a lot of research that looks and sees what types of behaviors give us the biggest hits of dopamine. Something like drinking coffee will double your dopamine levels.
Something like having sex will increase your dopamine levels by a thousand percent. I know there's research, but in terms of looking at your own specific levels, I don't know if that's available. But I think the question kind of speaks to wondering, where are we with our dopamine levels at baseline and then also when we're taking the medication?
Crista Ellis 00:42:45
Yeah. A good question to perhaps talk to their doctor about.
Dr. Megan Gomez 00:42:50
Yes.
Crista Ellis 00:42:52
Martha is wondering, what kinds of foods can I incorporate into my diet to help stimulate dopamine production?
Dr. Megan Gomez 00:43:01
Yeah, that's a great question. I know it's as simple as Googling what foods have tyrosine in them. I know there's a lot of beans that have tyrosine in them, but I don't know exactly. I know there are certain foods that you should eat to help you, and then there are other foods that you should avoid that can interfere with your Parkinson's medication. That's a great question. I think that's worth researching.
Crista Ellis 00:43:29
Thanks, Dr. Gomez. If one of our staff members who are joining us could respond to Martha with some of the nutrition webpages and resources that we have and share that with Martha. Thanks, Martha, for bringing that to our attention.
Could you speak on what signs veterans can look for for anxiety and depression and what kind of strategies have been effective in managing these types of symptoms for veterans?
Dr. Megan Gomez 00:44:03
Yeah, we're going to get into the nitty-gritty of that in the next part, but those fluctuations when you feel like you're coming off of the medication. A lot of times it's when you can feel that brain fog, where you feel like things just aren't clicking the way they're supposed to mentally.
Everyone describes it differently. Some people describe an unsettled feeling internally. Some people feel suspicious when they're coming off of the medication, wondering, are people doing things or conspiring about me behind my back? You can start lacking trust in some people. Then you take the medication and then those kind of subside. It's really person-specific in terms of how they describe what they feel when they're coming off of the medication. For some, it's more depression; some, it's more anxiety; some, it's more of the cognitive deficits; some, it's more the spaced out; some, it's more exacerbation of their chronic pain. It just really varies person to person.
Crista Ellis 00:45:17
Thanks for bringing awareness to that. Parkinson's is such a unique disease person to person, and it's important that we continue to talk about that uniqueness of the disease and the trajectory of it. Thank you for sharing that.
Patty's asking, how does PTSD impact Parkinson's, specifically for our veterans?
Dr. Megan Gomez 00:45:41
Yeah, that's a great question. At the VA, a lot of times the symptoms can overlap, just like in depression. Sometimes it can be hard to decipher. The person doesn't want to go to the party. Is that because of their PTSD symptoms? Is it because of the Parkinson's? Is it because of the depression? I think it really, again, requires someone to ask the questions. What is it about this party that you aren't looking forward to? It may be an identifiable cause.
It may just be those low levels of dopamine again, which don't make anything feel appealing. The PTSD and the Parkinson's can both cause disruptions in sleep. A lot of times when someone is meeting criteria for PTSD, it depends: is the person having nightmares? We know that people with Parkinson's can act out those nightmares. We see a lot of overlapping challenges regarding sleep and also that irritability, of course, being more rigid, not having that cognitive flexibility.
I think one thing to keep in mind is that if you see a psychiatrist for PTSD symptoms, sometimes some of the medications prescribed to treat PTSD are dopamine blockers, which can in turn negatively affect your Parkinson's. If you do have PTSD and Parkinson's, I think it's worthwhile to have a pharmacist do a medication reconciliation just to make sure that those PTSD meds aren't negatively affecting the Parkinson's, because sometimes the prescriber is thinking of the PTSD but not the impact on Parkinson's. That's something I see quite often.
Crista Ellis 00:47:45
Is there a resource at the VA or, you know, a specific expert that you might suggest reaching out to in managing PTSD and Parkinson's disease?
Dr. Megan Gomez 00:47:59
That's a good question. I know here at Long Beach there is, but in terms of a national person, I would start with the PADRECC and see what resources are available there. I can't speak to a national expert on that, but that would be wonderful if there's someone who's versed in both.
Crista Ellis 00:48:20
I was thinking perhaps a neuropsychologist can see that bridge between a movement disorder specialist or neurologist and someone who's treating PTSD.
Dr. Megan Gomez 00:48:32
Yeah, that's a good idea.
Crista Ellis 00:48:35
We got a lot of questions during registration, Dr. Gomez, about anxiety. I just appreciate you offering a more in-depth, foundational knowledge and understanding of what anxiety looks like in Parkinson's and how it impacts our lives. If anyone here has any questions to propose to Dr. Gomez specifically about anxiety that she has not answered in her presentation yet, please feel free to submit your questions.
Let's see. Oh, we did get a question about caregivers. Are there any words of advice or suggestions, guidance that you might offer caregivers who are actively building their skills and navigating the progression with Parkinson's? Not the person with Parkinson's, but how the care partner can also navigate this change in their lifestyle, perhaps, and in their relationship with their loved one?
Dr. Megan Gomez 00:49:34
Yes, I think that is such a huge and important topic. I would encourage everyone, every spouse or family member who has someone with Parkinson's, to seek their own mental health treatment. I was talking with a caregiver just earlier this week about how sometimes you're so enmeshed at times with the person with Parkinson's. We were laughing, saying it can sometimes feel like Parkinson's by proxy because you can be so attuned to those fluctuations.
I remember when I was with my grandpa and he was on, whoo, I was good. I knew he was feeling good, moving good, thinking well. Then when I could physically see him coming down and going off, I myself would get anxious just empathizing with how he was. He was more likely to fall then, and he was more likely to say mean things then, and he was more likely to be impulsive then.
It can feel like an emotional roller coaster for the family watching the person with Parkinson's have those fluctuations, and you can almost mimic that in your own body. That helpless feeling of when they're off but knowing it's not time for their next dose and tolerating that. I think self-care is so crucial for family caregivers, to not try to get so symbiotic with the person with Parkinson's, taking that time away. For the person with Parkinson's and the family, remember the next dose is coming.
They'll likely feel better, but just focusing on yourself, getting out of the house. Even if the person with Parkinson's doesn't want to go on the walk, you should still go. Even if they don't want to go to the party, you should still go. I think having a place where you can navigate those feelings of guilt, should I go by myself? Should I stay at home? There are just so many conflicting thoughts and feelings that I think it's important to have a space for the families to process that.
We know caregivers have much higher levels of depression and anxiety than people who aren't in that caregiver role.
Crista Ellis 00:52:04
Can't stress enough getting our own support, right? For those of us who are supporting others, supporting ourselves.
Dr. Megan Gomez 00:52:12
Yes.
Crista Ellis 00:52:14
We had a question in here. I'm trying to find it again in the Q&A. They were saying how, and this came from James, but I believe it's his wife who's writing in on his behalf, her husband is not experiencing these fluctuations as you described, these ups and downs and on and off periods between medication, and it's making it challenging for them to identify when he should take his next dose of dopamine. Do you have any words of wisdom to share to help guide these non-fluctuation signifiers that aren't happening for them?
Dr. Megan Gomez 00:52:52
No, I would just recommend taking the medication as prescribed by the neurologist. Usually there's that set schedule, and I think being diligent about following that schedule is really important. If you don't have those fluctuations, I think that's great. If you do feel more even-keeled and balanced, I think that's the goal. I think sometimes when we are having those on and offs, that's when we do want to bring it up to our doctors to see how we can minimize those fluctuations.
Crista Ellis 00:53:29
Great. That was the final question that we've gotten relative to... Oh, here's another question. Charlotte's asking, what if a patient refuses to take their medication? What would you have to offer?
Dr. Megan Gomez 00:53:46
Yeah, that's a tricky one, but one that comes up a lot. Again, I think what I could do from my perspective is really try to understand why the person is refusing to take the medication. Sometimes it can be, again, that suspiciousness that you're trying to poison me, this isn't really my medication.
Sometimes people don't like the way the Parkinson's medication makes them feel. Sometimes they feel nauseous. Sometimes they have that low blood pressure that makes them feel dizzy. I think there are a lot of reasons why people don't want to take the medication. Sometimes people just emphasize how exhausting it is to have to take medication every few hours, how it impacts your mood, having to take so many pills throughout the day. I think it would depend on why the person doesn't want to take their medication and trying to work with them to come up with a plan of action.
Crista Ellis 00:54:57
Frank from Buffalo, Wyoming, is asking, how insistent should a caretaker be in getting a person with Parkinson's to exercise if there seems to be an apathetic attitude on the part of the person with Parkinson's? How insistent should this caretaker be on getting their loved one to exercise?
Dr. Megan Gomez 00:55:18
Million-dollar question. I think caregivers are constantly having to toy with, how much do I push? I don't want to be a nag. I'm tired of reminding them. I'm tired of being a cheerleader. If they don't want to do it, how much should I push, and how much should I lay off? Oftentimes, I'll ask the person with Parkinson's, what do you want? Do you need that kick in the butt to get you going? You know what's good for you. What's the best approach? What's the most effective approach?
I think that's a real issue. How much do I push? When do I push? I think time of day can impact that. If you feel that the person with Parkinson's does better in the morning, try to exercise then. If you find a type of exercise that the person is less resistant to, try to encourage that exercise. If there's someone that they like exercising with, try to pursue that. But I think that's so common. How much should I push the person to exercise? How much should I push them to stop using certain substances like alcohol or smoking marijuana? It's such a fine line and delicate thing to know how to approach.
Crista Ellis 00:56:53
Thanks, Dr. Gomez.
I know we're getting a lot of questions about supplements. If our staff members present here could offer some resources in the chat for navigating the use of supplements and Parkinson's disease, that would be helpful so we can stay on course with our non-movement symptoms webinar today. Here's a good reminder: if you haven't had any water yet, stand up for a few moments, drink some water, and Dr. Gomez is going to continue us through the second part of her presentation today. Dr. Gomez, thank you for your time. We will have another question and answer session with her following her presentation on treatment, so I'll see you on the other side.
Dr. Megan Gomez 00:57:47
All right. Here we go. Let's talk about quality of life, and this is something that I know was coming up in some of those questions. I wanted to just bring some attention to the stages of grief for chronic illness. This is not specific for Parkinson's disease, and we see these stages of grief for lots of different types of chronic disease, including Parkinson's. Of course, at first, denial can be a really common response to getting a diagnosis of Parkinson's. Then there can be the pleading, bargaining, and desperation.
I'm willing to do anything if it will take this Parkinson's away. The next stage can be anger, and of course, these don't have to occur in sequence. You can skip. You can go back. You can start at different points in the grief process, but anger is a big one. I think not trying to repress the anger and learning positive ways of addressing anger is a big one. Anger in and of itself is not a bad emotion. It can be a really helpful emotion, and I think learning ways to channel that anger in a way that isn't destructive or hurtful to ourself or to our loved ones is really important. I think anger serves a lot of functions.
Anxiety and depression, again, as I mentioned, in Parkinson's can be a part of the grief, but it can also be a part of those physiological changes and the drop of dopamine and other neurotransmitters. Loss of self and confusion, which is going to be something we go into more detail about. Then reevaluation of life roles and goals. What am I going to do? What is my life going to look like with Parkinson's? What type of husband or wife am I going to be?
What type of grandparent am I going to be? What type of friend am I going to be? What are my goals? What I had envisioned for my retirement is now completely shattered, and I have to reinvent what these years of my life are going to look like. Then finally, acceptance. Rather than pulling on that tug-of-rope and putting a lot of energy into fighting this disease, sometimes we get to a place where we drop the rope and we stop fighting, and we find that we can use that energy in more meaningful ways.
Responses to disease, again, not specific to Parkinson's. One is that the Parkinson's disease disrupts all domains of your life. Every area of your life is affected. Financially, it's affected. You had to stop working because of the Parkinson's. Relationships are affected. All of this stress and your symptoms are causing a negative impact on your life. Socially, you've pulled back from your friends. You've isolated from them.
Dr. Megan Gomez 01:01:20
There can also be the rejection, neglecting and avoiding the disease. If I don't pay attention to it, it's not there. I'm going to carry on with my life as if I never got the diagnosis and pretending that all is well, not going to think about it, not going to pay attention. Acceptance when you incorporate it as a part of your identity. I say part of identity because it doesn't assume your whole identity. When you feel like you're able to accept it, you're not as overwhelmed by it.
Then enrichment. The Parkinson's has enabled me to make positive changes, and it's enabled personal growth. That's the goal, right? When we feel like Parkinson's has changed our perspective in a more positive and meaningful way, where we're not wasting our worries on things that really don't matter, maybe instead we have really identified what the most valuable parts of my life are and how I can really focus on those parts in order to have that be an enriching experience.
Let's talk a little bit about identity. I hear a lot of folks say, how the hell did I come to be like this? Because this isn't me. I don't recognize myself when I look in the mirror. I don't recognize myself in photos. I can't believe that I'm in a wheelchair now. I can't believe that this is my life.
I think of the stereotypical identity crisis, which is very common for people in the general population. I think people with Parkinson's, maybe you're not buying that red sports car, but you do have to reevaluate who you are and what your roles are, what you can contribute, and how you can feel like life is worthwhile even when you have Parkinson's. Again, for some people, they are able to accept the diagnosis and keep trucking along without much difficulty, and for other people, the diagnosis really seems to turn that life upside down.
Again, emphasizing how it's so different for everyone. Caregivers go through this same identity crisis. It's not what they envisioned for their retirement. They never thought that they'd be back in a caregiving role. Maybe they have already grown their children and they are thinking, oh my gosh, now I'm having to be a caregiver all over again. Is that something that I can do, that I want to do? I think the identity crisis is both the person with Parkinson's and the family members who love that person.
How much does my disease define who I am? How does your Parkinson's fit in with the story of your life? How will your trajectory, how will your life, look different because of the Parkinson's? Again, some people are very thoughtful and like to think about these types of things, and some people avoid any such discussion or even the thought of these topics.
When your body stops working the way it used to, how do you respond to that? I don't look the same, I don't act the same, I can't do the same things that I used to do. There can feel like a real loss of self and suffering as you feel like things are slowly being taken away from you.
What is the most challenging loss to accept? I think this really varies person to person. For example, if you were a college professor, maybe your speech, your voice, being able to express yourself, articulate ideas, teach, having that ability to verbally express yourself is very important. Maybe being in a wheelchair, using a walker, or using a cane, that's not as big of a deal because you're still able to engage in your professor role, right? In contrast, if you were in construction, if you were a handyman, if you were able to fix all things around the house and now you're having to pay someone to do things that you could very easily do before, that would be really difficult for you.
Dr. Megan Gomez 01:06:25
Maybe you're a painter and maybe the tremor or the reduction in your motor coordination is hard for you. I really think that challenges are specific to the person and what was wrapped up around their identity. For some, it's the intellectual aspect. The cognitive changes are the most difficult because their intellect is what gave them that sense of pride and made them feel like they were them. So I think depending on your identity and your life, your occupation, your hobbies, what gave you that sense of accomplishment, if that is touched, I think that can be really tough.
Of course, we always feel that sense of isolation, right? Why do my friends get to do what they want to do, go on vacation and travel and still get to work and be physically active, and I can't?
I think it's very easy to compare ourselves to other people. Or you feel self-conscious when you go places. You feel like people are distracted by your tremor or by the way you eat if you go to a restaurant. I think there are a lot of things that can contribute to feeling isolated. Maybe you don't feel like you're being invited places as much because people feel like it would be too hard for you. Or sometimes you can feel isolated from your family. Maybe they don't know how to respond to the Parkinson's, or maybe they pretend like it doesn't exist, or they don't want to hear about it because it can make them feel sad or anxious.
Again, we know that Parkinson's is incredibly complex in terms of not everybody's the same. Some people never experience certain symptoms. Some people progress quickly. Some people progress very slowly. Some people are very responsive to the medication. Some people have really nasty side effects of the medication. Some people seem to still have a great quality of life despite the Parkinson's. For some people, it really takes a toll on them.
I think it certainly can impact research in Parkinson's because it is so complicated and people respond so differently to it. That's why I love being a psychologist because I get to work one-on-one with people and with families to see how they're doing with all of the complexities of Parkinson's.
Jordan Peterson says that the fundamental problem of life is complexity, that life can get so complex that you'd rather be dead, right? Of course, we can't talk about depression without thinking about suicidal thoughts. Things can get beyond your control. Multiple catastrophes can happen at the same time. Life can feel like it gets too complicated and there's no way out.
I think acknowledging Parkinson's is complex and sometimes it feels like we're just buried under all of these stressors, and it can be paralyzing in some ways, knowing how to move forward.
Dr. Megan Gomez 01:10:21
Again, those fluctuations can also add to caregiver burnout. The things changing from day to day, hour to hour, it can be difficult to make plans, it can be difficult to commit to things because it may sound good now, but it may be a really hard day when the activity comes up on the calendar. Again, the medication wearing off, it can worsen depression, anxiety, cognition, fatigue, irritability, pain, and motor symptoms.
Fluctuations can be different in various settings with different people. Sometimes I'll hear from family members, he's so apathetic when he's with me, and then so-and-so will come over and he perks up. It can be confusing as to how that happens or why that happens. It can be hard to have consistent expectations because someone who is on may be able to do something, but then when they're off, they have challenges. So it can be really hard to know, going back to that caregiver question of how much do I push?
I also hear from caregivers, how much should I help? How much should I offer to do something, or should I let them try to do it on their own? I think there's both ends of the spectrum.
Impact on the family. I use this slide in almost every talk I give because I hear these questions so much. Is this John? Is this Parkinson's? Is he just not trying? Is he being manipulative? Is he faking? Are these genuine things that he's struggling to do? Are these complaints authentic? It's hard to know when to push and when to lay off. Should I be mad at him? Can I not blame him?
Is it the disease? How much personal responsibility should they assume? Is it outside of his control? Does he just not care? I don't want to be insensitive. How much should I try to help? Again, I think these are all completely normal and common questions that families are often asking, and it can feel like you're tiptoeing. You want to be helpful, but sometimes it seems like your attempt to be helpful can be irritating to the person with Parkinson's. Sometimes they respond well to your offer to help, and sometimes they're offended by your offer to help, which again, I think is so hard for families.
Again, I think it's so important to understand that those levels of dopamine can really impact all of these things.
We talked about those fluctuations. Talking about marriages in particular, we know through the statistics that three out of four marriages end in divorce when one spouse has chronic illness. It's because it's stressful. It's hard. There's so many adaptations that need to happen. Roles are changing. Lifestyles are changing. Routines are changing. It can really impact every aspect of a marriage. Intimacy looks different. Communication can look different. That initiation of conversation, I hear often from spouses that if I don't ask them how they're doing, they won't ask me how I'm doing. Or it feels like it's all about the person with Parkinson's. Some people will say there's three of us in this marriage. Parkinson's is the third element in a marriage.
I think couples therapy can be super helpful, as well as the person without Parkinson's being in their own psychotherapy as well.
Dr. Megan Gomez 01:14:46
Questions come up about meaning making. Sometimes people will say, what is the meaning of all of this? This kind of speaks to the theology background. Why do bad things happen to good people? How did God let this happen? What does my faith in God look like now? It can change your spirituality. All of these existential questions can come up.
Let's talk about treatment. I encourage everyone to talk about these issues: talking with your family, talking with friends, talking with medical providers, and being honest. I think that's really the first step.
There are a lot of different treatments available. Of course, talk therapy and medication are some of the most common, most helpful, and sometimes if you can do the two in conjunction, that can be really helpful. We talked about how people with Parkinson's have that low level of dopamine. They can also have those low levels of other neurotransmitters such as serotonin or GABA. Sometimes medication like an SSRI can boost the serotonin levels or boost the GABA levels. Not everything has to be focused on the dopamine.
I encourage everyone to have a daily practice, figuring out the sleep. We know that people with Parkinson's sleep less hours than people without Parkinson's, their quality of sleep is reduced, and they wake up more frequently than people without Parkinson's. Really focusing on sleep can be crucial. If you don't sleep well, you're not going to be in a good mood the next day, you're not going to be motivated. That's only going to compound these symptoms.
Diet, of course, is very important. We know that there are some theories that Parkinson's is a result of inflammation. Eating a diet that is low in those inflammatory responses. Of course, things like vegetables, fruit, meat are much better than processed foods, which are having that response of inflammation in our body, in our brain.
Sunlight is so crucial. I've been doing a lot of research lately on sunlight and how important it is on a sunny day to spend at least five or ten minutes in direct sunlight without sunglasses on. I know this can be in particular difficult for people with Parkinson's because one of the dopamine pathways is directly to our retina, and our retina needs dopamine in order to regulate the eye, so in order to not make it so bright when we're in the sun.
A lot of people with Parkinson's feel like it's too bright when they're in sunlight, or they feel like they can't see when it's dark. That dopamine in the retina can really impact the way our eye automatically adjusts to light. Nevertheless, getting that direct sunlight in the morning in particular is so important for the way our body is working, for our sleep cycles, for our mood, for our alertness. I could go on and on. Then physical exercise. I think if there's four things to focus on, it would be these.
Dr. Megan Gomez 01:18:32
Remember pain and effort go hand in hand. When we feel that pain of wanting something, that dopamine gets us motivated to do it. A dopamine spike is needed to crave something, and then there's that dip in dopamine to motivate us to move. Did we get the dopamine spike when we experienced what we wanted? Sometimes we have the ice cream and it never really felt all that great. Sometimes we did the thing that everyone's telling us to do is good for us, and we don't feel any better.
All of these things inform whether we repeat activities or stop the activities.
Remember your next dose of the medication is coming when you're feeling off and you start to feel anxious, you start to feel suspicious, you start to feel panic, you start to feel cloudy. Knowing that next dose is coming, and don't wait to do something until you feel like it, because the reality is you may never feel like doing it.
The grass isn't greener on the other side. It's greener where you water it. I think this is really important to remember. Everyone is dealing with something. Sometimes it can feel like we have it harder than other people. So there's choices, right? You can have the choice or make the decision that nothing you do means anything, and therefore you don't have to do anything and nothing is your responsibility. Or you can decide everything you do matters. If you make a mistake, if you betray someone, you must be responsible.
We know that the more responsibility we have, the more meaning our life has, the more purpose we have.
This talks about whether we feel like things happen to us, like we're the victim, or if we make things happen, if we are going to take control and sort of be the driver of our life.
This is a quote by Charles Darwin. It says, "It's not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change." We know that Parkinson's is constantly throwing us curveballs, and our ability to roll with the punches, to be flexible and to adapt, is really crucial. So how do we reinvent our identity? New activities and a new sense of self. What can we still do? What kind of activities will support your new identity?
I think we can go down a really negative rabbit hole: I can't do this, I can't do this, I can't do this. I think shifting to the things that you can do.
For the sake of time, I'm going to breeze through some of these. I want to say, don't believe everything you think. Just because you have a thought, doesn't mean it's true. Just because you have the thought, I would be better off dead, doesn't mean it's true. Just because you have the thought, I'm a burden, doesn't mean it's true. Just because you have the thought, my future is doomed, doesn't mean it's true. In psychotherapy, oftentimes we work to create distance between the thought and what you believe.
Sometimes people think, I have the thought, it must be true. A lot of times, it's not.
We develop negative coping skills because they work to help us survive. Sometimes we're workaholics. Maybe something happened in our childhood that made us feel unworthy or inadequate, so we became workaholics. Maybe we became addicted to exercise. We worked out. We had an amazing physique. We ran marathons. Now we're having to learn new coping skills. Maybe we can't be the workaholic. Maybe we can't be the athlete we used to be. A lot of times we're having to switch our coping skills. Maybe they worked then, but because of our Parkinson's, they don't work now. So learning new ways of coping.
Dr. Megan Gomez 01:23:09
I think it's really important to create a structure for your day. Don't wait until you feel like exercising because you might not feel like it. Schedule it in. Reserve a time with your trainer so that you do it because it's scheduled and you have to pay for it either way. Oftentimes, we start with asking, do you have a job? If you don't have a job, it can be really hard to get motivated, to get dressed, to take a shower, to get going. Unless you have somewhere to be, it can be really tough to get that push to get going.
Lessons learned: being present in the here and now. Life is not about being happy. I think sometimes we strive to be happy. My encouragement would be to find what's valuable. What are your values? Is it to be a generous person? Is it to be a source of encouragement for your grandkids? Is it to be a good partner? Is it to do community service? Is it to write a check to organizations that are doing good work? I think it's really important to not have happiness as the litmus test or what other people are doing around us, finding out what is most valuable and meaningful to you.
What matters most to you? If you didn't have Parkinson's, what would you be doing? Really trying to come up with behaviors and actions that you can do that are in line with your values.
With that, we will stop. I will be happy to take any more questions that we have.
Crista Ellis 01:25:03
Thank you, Dr. Gomez, so much. I know we got several questions coming in as you were closing your presentation, so we'll jump in just for the sake of time that we have. We're so limited in time. There's always so much to cover.
Joe asked us, what are some methods to help us get reinterested in activities that we used to love?
Dr. Megan Gomez 01:25:26
I would challenge that question a little bit and ask, what are new activities that we can do? I think sometimes we get stuck in things we used to love or be able to do. I think sometimes it's starting here. What are our capabilities now and what are things that we can do that are in line with those values, right?
Maybe it's a value of being a really good neighbor and thinking of things we can do that are in line, in service of being a good neighbor, and really using that to shape our goals, using that to come up with our to-do list. Starting with the values and then coming up with behaviors that are in line with those values.
Crista Ellis 01:26:21
Yeah, so there are these formerly loved activities, right? It was a version of your former self, your former identity, the things that you formerly liked to do. I love that you're encouraging us to try something new, try new things.
Dr. Megan Gomez 01:26:35
Yes, we know that novelty is so important in giving us those feel-good chemicals. Doing something new, I think, is where I would focus on.
Crista Ellis 01:26:49
Joe says thank you so much, Dr. Gomez. I just saw them write in there.
Kathy is asking us, so they're having some trouble with some friends, and it sounds like they're wanting to learn how they can cope with friends or family sort of disappearing from their life because they can't deal with the fluctuating symptoms. Now it's just you and their care partner, their spouse. They feel alone, isolated, and lots of loneliness. So there's a difference between alone and loneliness. How do we deal with friends and family disappearing because they just can't deal with their Parkinson's?
Dr. Megan Gomez 01:27:28
Yeah, I think I would focus on we can't change anyone except ourselves, right? I think allowing yourself to feel the emotions as a result of that and then figuring out other ways to get that social support and engagement. Maybe it's fostering new relationships. Maybe it's if you have a church community, maybe joining a Parkinson's support group or a caregiver support group.
I think there are so many ways of focusing on other relationships because I don't know if the investment is necessarily worth the payoff in pursuing those relationships that have been hurtful. Again, maybe those relationships, I mean, if it's family, it's different. If it was a friend, I think it's absolutely okay to say, they were great friends for that phase of my life, and now I'm in a new phase, and how can I get that social support and connection with where I am now?
Crista Ellis 01:28:34
Orlando says, as someone living alone with Parkinson's and I have no caregiver, what are some resources for how to communicate with others when my symptoms are fluctuating?
Dr. Megan Gomez 01:28:46
That's a great question. I think preparation is key, and I learned so many ways that my patients prepare for things. Preparing for how to communicate when you're off. Maybe they'll have prepared something in advance. Maybe they have something that they either wrote or printed out, if they're having difficulty expressing themselves, just having their thoughts on paper already. Really being creative and planning ahead. Of course, it doesn't always work out as planned.
Trying to do things when you anticipate that you'll be on, but of course, things can turn on a dime and it's not always like that. I think trying to think of how you can prepare in advance so that you don't kind of fall apart in the moment. I think preparation is really important with Parkinson's, anticipating those off symptoms and figuring out what you'll do in those situations ahead of time.
Crista Ellis 01:29:56
Our final question for today's webinar from an anonymous attendee, and they say, would you recommend pairing a rewarding or sort of a motivating action after a therapy session or exercise? It sounds like positive reinforcement is what she's asking about.
Dr. Megan Gomez 01:30:13
Yeah, absolutely. If that's going to motivate you to do it, absolutely. It doesn't always have to be like, sometimes it could be an ice cream, but I think sometimes it can be watching a TV show that you enjoy, or maybe you got a magazine in the mail but saving it until you feel like you deserved it. Whatever things you enjoy, absolutely save it until you've done something that you don't want to do, and then you'll get it.
Crista Ellis 01:30:45
Thank you, Dr. Gomez. Before I do closing announcements, are there any final words or another quote you might want to share with us before we jump into closing?
Dr. Megan Gomez 01:30:56
Yeah, I think the thing that comes to mind is that you guys are veterans. I think there's such a level or sense of camaraderie between veterans where it's like maybe you don't know each other, but you know that you have each other's backs. It warms my heart when I see the veterans in my Parkinson's support group, when they know someone's having a bad day, they attended the support group, and they give that person a call afterwards, hey, just wanted to check in, to let them know that they aren't alone.
I think if you can participate in a veteran support group for people with Parkinson's, that is even better because there is that sense of brotherhood and sisterhood where you already get each other, and there are such shared experiences from your time in the military. I think knowing that there are people that care about you, you just have to get connected.
Crista Ellis 01:32:00
Thank you, Dr. Gomez, and thanks to everyone who joined us for today's webinar. I really thank you, Dr. Gomez, for all the time that you put into this presentation, showing up today and being so generous with your knowledge and time. We really appreciate you.
Dr. Megan Gomez 01:32:18
Thank you so much.
Crista Ellis 01:32:21
Join us for our next webinar for our veterans, Planning for the Future. During this webinar, we will offer tips and means of support to help us prepare for the future and what that might look like. You can learn more about our veterans webinars and register to attend at Parkinson.org/Veterans.
If you had a question today that was not answered, please reach out to our Helpline by calling 1-800-4-PD-INFO or emailing Helpline@Parkinson.org. You can use that same contact info to order our free resources, educational book series, and our hospital safety kit. We thank you for joining us today, and I hope to see you again soon. May you be well. See ya later.
