Crista Ellis 00:00:00
Hello and welcome to the Parkinson's Foundation's webinar, Environmental Exposures in Veterans with Parkinson's. I'm Crista Ellis, your host for today's webinar. Helping me behind the scenes are my colleagues Jenny Fearday, Danielle Agpalo, and Laura Cameron. We are recording today's presentation. You will receive a follow-up email from us with a link to today's recording and other resources in the coming days.
The mission of the Parkinson's Foundation is to make the lives better for people with Parkinson's. Whether you are living with Parkinson's, caring for someone with Parkinson's, or working to end the disease, we are here to support you.
To achieve our mission, we pursue three goals: improve care for everyone with Parkinson's, advance research toward a cure, and empower and educate our global Parkinson's 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 @ Home series, including Mindfulness Mondays, Wellness Wednesdays, Fitness Fridays, our Expert Briefing Series, and EP Salud 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 Parkinson's. A critical way we do that is through our partnerships. With more than 110,000 veterans living with Parkinson's disease, the Foundation is proud to have established a formal partnership with the Veterans Administration. This partnership has the overarching goal 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 Webinars for Veterans is presented with support from the Don and Lorraine Freeberg Foundation. We want to take this moment to thank the Freeberg Foundation for helping to make these webinars possible.
As we begin the formal webinar, please know that we are recording today's presentation. You will receive a follow-up email from us with a link to today's recording and other resources in the coming days. I'd like to shout out and acknowledge those who are joining us from a watch party. Welcome Parkinson's Group of the Ozarks, the Cedar Rapids Metro Parkinson's Association, the Jewish Community Center of Greater Kansas City, the Buffalo VA Medical Center, the Katz JCC of Central New Jersey, and the Dakota Medical Foundation in Fargo, North Dakota. We'd love to know where everyone is joining us from. Please share with us in the chat. I'm tuning in from the Appalachian Mountains of Western North Carolina.
Today we welcome Dr. Caroline Tanner. Caroline Tanner is a professor of neurology and vice chair for clinical research in the Department of Neurology at the Weill Institute for Neurosciences, University of California, San Francisco. Her clinical practice specializes in movement disorders. Her research interests include descriptive epidemiology, environmental and genetic determinants, biomarkers, early detection, non-motor disease features, and clinical trials for all stages of disease. Dr. Tanner, thank you for sharing your time and knowledge with us today.
Dr. Caroline Tanner 00:03:37
Thank you very much. Let me find my screen to share. Here, and hopefully that's working well for everyone.
I'm really delighted to be able to speak with everyone today, and I'm going to talk about environmental exposures and how they relate to people with Parkinson's who have military service. To start, I'll just talk a little bit about what causes Parkinson's, and I want to point out that some of our best understandings from this also came from veterans. In fact, veterans, given their service commitments, have really participated in many research studies and helped to advance our understanding of Parkinson's.
This is one example I was privileged to be part of, where back before the days when we had analysis of genetic material, we were curious to know whether Parkinson's was primarily due to inheritance, things in the DNA, or the environment. The way we did this was we worked with a panel of veteran twins who had been assembled: more than 30,000 twins who worked or were service members in World War II. We looked at twins who were identical and twins who were fraternal. The identical twins have almost all of their shared genetic material, and the fraternal twins about half.
We looked to see, if one twin had Parkinson's, what about the other one? What we found was that, except for people with a really young age at onset, the relationship between one twin having Parkinson's and the other was similar in identical and fraternal twins, suggesting that it's not a strongly genetic component in most people. That was back in the late 1990s that we reported that in these men who were then in their 70s and 80s. Then we were able to recently do a follow-up 20 years later.
In our follow-up, what we found was the same thing, basically. At this point, most people had passed away. Some people were still living, and the relationship between having Parkinson's, if one twin had it, to the second twin having it was pretty much the same. So a little bit higher in identical twins, but basically fairly similar, especially in people with an onset after the age of 50. That led us to believe that we were right to be looking for environmental determinants of Parkinson's, as we had been doing based on that early finding 20 years before that.
Having said all of that, since that time, of course, our understanding of genetics and DNA has just dramatically increased. We know that there are some people who do have a strong inherited component to their Parkinson's, just as we saw in the twins. Some of them are younger age at onset. Not all of them are younger age at onset. More than that, there are lots of very small genetic changes that probably contribute to the risk of Parkinson's, even though they're not strongly causative all by themselves.
The combination of those variants in your inherited characteristics and what else you do, your environment and behavior, may contribute to Parkinson's. I highlight that because the Parkinson's Foundation is leading a really important initiative called PD GENEration that many of you have probably heard about. You can go to the website and find out about it, but it's important because if you are one of those people who does have a gene that has a strong association with Parkinson's, you might want to know that in general, but it might be especially important in terms of the possibility of certain kinds of very specific treatments. I just refer you to the website to learn more about this.
Dr. Caroline Tanner 00:07:38
I'm going to focus on some of the environmental determinants. By environment, what I mean are things that are not inherited. They're not inherent to being passed from one generation to the next. They're things that you might do or you might be exposed to over the course of your life, and how they relate to Parkinson's, with a special emphasis on ones that are particularly related to people who have had military service.
The first one I'll talk about is pesticides. This is the first one we really explored. This is a graph that shows this midline is like nothing's going on, and everything to the right of this shows that there is an association between pesticides as a big category and risk of Parkinson's. When you sum these all together statistically, what you find out is that maybe there's about a 70% increased risk all over the world, all different populations, if you have a pesticide exposure.
Of course, the catch here is that pesticides are a huge category, and there are all these different types of chemicals in there: insecticides, herbicides, fungicides. Focusing that a little bit more seems to be an important thing to pursue. My colleagues and I looked in a population of farmers and their wives that had been set up by the National Cancer Institute in the U.S. to explore the relationship between their use of pesticides and Parkinson's disease. These were farmers in the U.S., in Iowa and in North Carolina.
When they registered to use pesticides in their farms, we were able to track them. They volunteered for research, and then we went into their homes and examined them to see if they had Parkinson's or not. What we found was an association between two specific pesticides. One was paraquat, which you've probably heard about more because that has come up in a number of other populations. The second was rotenone. These both showed about a twofold increased risk of Parkinson's if you had used these in an occupational sense. More importantly, they had what we call biological plausibility.
We think it wasn't just a coincidence because when we studied it in the laboratory, we could see changes that were similar to the changes we see in people with Parkinson's. Of course, we're not going to test this out by giving some toxic chemical to a person to see if they're going to get Parkinson's. This is the best we can do when we're looking at these kinds of associations in populations.
The next thing we did is we looked at another population, and here again we found paraquat. The one I want to highlight today is we also found 2,4-D to be associated with Parkinson's. 2,4-D is a common herbicide. People can buy it and use it in their house, but more importantly, 2,4-D is one of the three chemicals that is part of Agent Orange, which anyone who served in the Vietnam/Korean War era will be familiar with. People who had very specific types of military service could have been exposed to this chemical, and it was determined to actually be associated with Parkinson's in veterans with certain specific types of service connections.
Later in this webinar, we're going to hear from Gretchen Glenn, who's going to talk very specifically about disability compensation and health care veteran benefits for veterans. This is one of the exposures that military people have that can be, in fact, related to their service.
There are lots of other pesticides in the world, and many of these are also exposures that people can have in military service. None of these at this point has what's called a presumptive association with Parkinson's, although in certain kinds of populations outside of the military, there have been suggestions that these are associated with greater Parkinson's risk and, in the laboratory, suggestions that these can cause Parkinson's-like change.
This includes a lot of people who are Gulf War era veterans, wore uniforms that were impregnated with specific pesticides like permethrin, or used repellents, or lived in tents where they were sprayed or the camps were sprayed. This is to prevent disease, but it also may have put people at risk of Parkinson's. This so far is still an area of research, and I'll talk briefly about that later.
Dr. Caroline Tanner 00:12:31
The next area I want to talk about is chlorinated solvents. The first observation about a relationship between chlorinated solvents and Parkinson's came from Don Gash and colleagues, who were studying people at a small plant in Kentucky where these solvents were being used in industrial processes. They had three people with Parkinson's who all did pretty much the same job, and they got interested and went and evaluated people in the factory and said a lot of the other people doing that job had mild signs of Parkinson's, although not the diagnosis.
Other people who didn't have that job didn't have it, and they found the common factor was a degreaser called trichloroethylene, which is a chlorinated solvent. Then we followed this up with our World War II veteran twins population, and we looked at twin pairs where one twin had Parkinson's and the other did not. We took really detailed occupational histories. What did they do? What were their jobs? What were their tasks?
We worked with an industrial hygienist who didn't know whether the twin had Parkinson's or not, just looked at the history and said, this person had that exposure, this person had that exposure. It was as objective as we could be. We found a relationship between two chlorinated solvents, trichloroethylene and perchloroethylene, its kind of cousin, to be associated with a six- or tenfold increased risk of Parkinson's. Again, a really big increased risk if you use this in your occupation.
In the animals, we found again changes very similar to those that we would see in someone with Parkinson's, so that biological plausibility again. This is important for people in the military who served at Camp Lejeune. The history here is that the water at Camp Lejeune was contaminated by trichloroethylene and perchloroethylene, or perc, for a long time, from 1953 to 1985. It was recognized in 1980. The wells that were the source of the water for a big bunch of Camp Lejeune that's represented here were closed in 1987, but as many as 100,000 people who lived on base or served there were exposed, military and civilians, right? The exposure level for TCE, for example, was more than 70 times higher than what the EPA said should be the maximum safe level to be in the water. It was a really big magnitude of exposure.
There was a study done in 2014 by the Agency for Toxic Substances and Disease Registry, which looked at everybody that they assembled for a period of time who had been at Lejeune, and they found excess mortality in service members. They weren't looking at Parkinson's. They were looking at other outcomes like cancer and things like that. This was a pretty young cohort at the time. We worked with them to see whether there was an association between living at Camp Lejeune and having an increased risk of Parkinson's.
We compared them, as they did in their study, to people who lived at Camp Pendleton in Southern California, where there wasn't this kind of contaminated water. We said very simply, are there more people with Parkinson's at Lejeune than Pendleton? We looked at people who had exclusive service, not at both places. What we found, we went through VA records, Medicare records, the death index, and looked at charts to be sure of the diagnosis, was that people who served at Lejeune were about 70% more likely to have Parkinson's than people who served at Pendleton.
We weren't looking at dependents here, just military. This suggests that even the exposure to the contaminated water in Lejeune was associated with Parkinson's risk. There are a couple of other things we also found. We found that there seemed to be an increase in what we think of as some of the earlier stages before the diagnosis of Parkinson's disease, people with loss of sense of smell, things like that.
We also looked at the people diagnosed with Parkinson's to look at their progression, and found that people who had Parkinson's and had served at Lejeune seemed to progress a little bit more rapidly than people who had Parkinson's and had served at Pendleton. This is still a young population. We hope to be able to do more follow-up in this in the future and to understand a little bit more about it. Based on various different types of research, the VA has decided that people who served at Lejeune are entitled to benefits, including for Parkinson's.
Dr. Caroline Tanner 00:17:27
I want to talk just a little bit about TCE because while it's really important for people who served at Lejeune, it's also really, really common. This is just some examples from googling around on the website that show what we call pollutants, where trichloroethylene is what we call a persistent organic pollutant. It sticks around. Here's a place where it's in Mountain View, California, right under the Google campus. It's in a lot of different places. Many times you don't even know it's there. It's estimated to be in about 33% of U.S. water supplies.
It's also tricky because it's not just the water. It's what's called a volatile organic compound, so it kind of evaporates and can concentrate in a building. This is a schematic for how it can come from the pollution, go up into the building and just kind of be there in the air, and you can be exposed that way from breathing it. This is a recent study of a law office where a bunch of attorneys got Parkinson's, and they said, "This is kind of weird. Why would this be?"
They did some exploring and found that there was a dry cleaning facility that had contaminated the ground next to their building, and it kind of evaporated into their building. At least it suggested that that might be the cause of the Parkinson's and the trichloroethylene-associated cancers that were found in the people working in that building, compared to people working in other buildings in the same town. This was in Rochester, New York, who didn't have that problem. Again, a suggestion that this may be an important factor not just in military, but in other people as far as Parkinson's risk.
As I said, we always look at biological plausibility. The interesting thing here is that all of these things seem to have similar actions that relate to what we know as a cause of Parkinson's in a sort of mechanistic way. Again, the suggestion that this is, in fact, something that is a real association and not just sort of happenstance.
The next thing I want to talk about is traumatic brain injury.
Again, back to the World War II veteran twins. We looked at twin pairs where one twin had Parkinson's and one did not, and we asked whether they had had a head injury. Here we went back and we got medical records, and we documented that they were real head injuries and not just they remembered it more because now they have Parkinson's and they're looking backwards to see what they can remember. These were true head injuries, and what we found was that there was, in fact, about a three times bigger risk of having Parkinson's if you had a head injury.
The twins with Parkinson's were much more likely to have head injuries than the twin without Parkinson's, and then we looked further and found that if you had more than one head injury, it was even greater. So as much as a five times increased risk if you had two injuries or more. This again leads to the idea that this is something real. One is bad, two is worse. That kind of makes sense. We think of that as something that is what we would call a dose-response relationship that scientifically makes sense to us.
The other thing we found that was very interesting was that people who had variants in one of the genes that is strongly associated with Parkinson's, called alpha-synuclein, that makes a protein called alpha-synuclein, people who had variants in that gene and had a head injury were at much more increased risk of Parkinson's. The numbers somehow didn't show up here, but this is 11 up here, and this is sort of 1.5 and two. These are lower risks: the risks from the gene, the risks from the head injury.
But if you have both, you have a really big risk of disease. This is a principle that we found, I won't have time to explain today, but that we have found in many, many different settings. It's what we call gene-environment interaction, right? That's the technical scientific term. What it really means is we say genetics loads the gun, but environment pulls the trigger, right? You may have a genetic predisposition, but if you don't also have the environmental exposure, it may not be manifest. There are lots and lots of examples of this I can't describe to you today.
Dr. Caroline Tanner 00:22:10
It's another reason why paying attention to both sides of the coin is very important, not just to understand cause, but we hope that understanding cause means we're going to be able to give people very specific kinds of treatments in the future as well. Traumatic brain injury is another one of the conditions that is, by the VA, considered to be presumptive of a service connection as a secondary factor. Gretchen can explain all this to you. In the absence of clear evidence for some other cause, it is felt to be a secondary—Parkinson's is a secondary result of TBI.
That's the end of the presumptives, but I'm going to touch a little bit on some other things because they relate to research that is now ongoing that my group and I are involved in. The first thing I'm going to talk about is air pollution. These are studies that have recently been published. This comes from a group at Washington University in St. Louis, and they looked at U.S. Medicare beneficiaries, and they looked at air pollution levels that had been measured around the country, and particularly a certain element of air pollution called PM2.5, or particulate matter 2.5, which is a kind that can often be associated with injuries of certain types, mostly respiratory illnesses. This line here shows the relationship between increased amounts of this PM2.5 and individuals who are at risk of Parkinson's according to having that diagnosis in U.S. Medicare. So, an increased risk of Parkinson's associated with living in a place where PM2.5 is more common.
It suggests there's a relationship, and there are a lot of other studies. This is just one I chose to show. We found something similar in the Agricultural Health Study. This is a schematic that Jeff Bronstein and his colleagues put together to show what that means. You get the pollution, it gets into your lungs, but then it gets into the rest of the body because these are little tiny particles, and they cause inflammation. They may themselves penetrate into certain parts of the body, organs, into the nervous system, and cause injury. So that's a theory. It's a diagram they drew that suggests that exposure to these particulate matter may be associated with increased risk of Parkinson's or other neurodegenerative disorders.
This is a study, a map of the U.S., that the Parkinson's Foundation supported. We looked here at the distribution of people with Parkinson's across the U.S. You can see the purple, that's where there are lots of people, and the green is where there aren't so many people, adjusted for the population, so percentage of people given the whole population, their age and their sex distribution. There are pockets of Parkinson's around the country.
Is this because of differences in either pollution or pesticides or, you know, chlorinated solvents? We don't really know, but it's a suggestion. This is just another reason to pay attention to these things. The reason I bring this up in part is because there's a lot of interest in understanding the health effects of military burn pits and exposure to particulate matter during military service, including people who served in the Gulf War era who may have been exposed to sandstorms as well.
Burn pits have a lot of waste, as well as a lot of particulate matter, a lot of toxic chemicals, volatile aromatic compounds as well. The PACT Act of 2022 gives health benefits for respiratory illnesses and cancers, but Parkinson's isn't mentioned at that point, and it hasn't been proven to be associated. I'm bringing it up, one, because there's a burn pit registry in VA, and I think it's important for people to participate in these because it's how we learn and understand. Two, because I wanted to point out that there is work going on, and some of the people in the audience may be part of this.
Dr. Caroline Tanner 00:26:30
This is the Millennium Cohort. It's a Department of Defense-established population. Participants in this answer questions and tell us about their health and disease over time. These are all military service across all the different services, all the branches. People are asked wave one, wave two, wave three, wave four to tell us stuff about their health, and it's going to go on to 2068. Most of these people are still pretty young, and Parkinson's is much more common after the age of 60. We're starting to study Parkinson's in this Millennium Cohort.
Some of the things that we can explore include burn pits, oil well smoke, petroleum product exposure, as well as some of the things I've just discussed, like exposure to solvents, jet fuels, and pesticides. We're in the middle of doing some preliminary work in this. This is work that will be going on over time, but it's another way to be able to understand the possibility, at least, that some of these exposures that we know from civilian population studies appear to be associated with greater PD risk could also possibly affect people who are military service veterans.
This is just the last thing, some of the other things that we're exploring that are novel, haven't really been thought about in Parkinson's risk, are combat stress, which is sort of ubiquitous, but over many decades, including in World War II era veterans, has been thought to be associated. I want to refer you to the VA public health website because they have a lot of details there. It's open to the public. You can just access it, about some of these different exposures and also who might be eligible for presumptives and how to get benefits. Then Gretchen, of course, will give us an overview of this as well at the end.
Just to mention, presumptive diseases are what the VA has decided are related to a veteran's qualifying military service. That's the catch, and you can read about that from the website as well. The ones that we have at this point are Agent Orange, service in Camp Lejeune, and traumatic brain injury.
I also want to just end with a little bit of hope for the future. This is always good, to have optimism, to know that a lot of research is going on that's likely to make things better. The first thing I want to point out is that there are things you can do for yourself, whether you have Parkinson's or you don't have Parkinson's, if you think you might have been exposed and could be at risk for Parkinson's. What we found is that physical activity and eating a healthy diet are associated with either a lower risk of getting Parkinson's, even if exposed, or a slower progression of your Parkinson's, even if you've been diagnosed. These are things that you can do for yourself. I know the Parkinson's Foundation website has a wealth of resources for you that will help you to be able to address these issues. That's a really important thing that anyone can do to help themselves. The other thing I mentioned earlier is the idea of precision medicine.
Dr. Caroline Tanner 00:29:54
Combining the exposures and behaviors that might have happened to you in life, as well as maybe your genetic makeup and your family history, putting all of those things together to give your own individual profile, we hope soon will help us to be able to actually target very specific treatments that will work for your Parkinson's and be much more effective than treatments we have now. Hopefully, we'll be able to slow or stop progression. This is just a little schematic about one of the proteins that we know is associated with Parkinson's, called alpha-synuclein. I mentioned it before.
Alpha-synuclein, we know now, starts back here, and Parkinson's diagnosis is up here. This is five, 10, more years. If we can get back here and start targeting people then and give them interventions that slow or stop disease progression, we'll be making a huge dent in the number of people with Parkinson's. This is our goal. This is what we're working on.
There are a number of different groups. This is a group that's been convening every couple of years to get together to try to identify ways to do these really early prevention studies before the diagnosis of Parkinson's. There's another type of study that's going to be happening similar to that within the context of a big cohort of people who are being followed for biologically defined risk factors for Parkinson's called Parkinson's Progression Markers Initiative.
There are some studies in Europe that are happening looking at physical activity. Lots is going on in this world that we hope will soon make it much easier to slow or even stop progression of Parkinson's. This is a cartoon that shows, from a review article that was recently published, all the drugs. Every word that you see on here is a drug that's being evaluated. The top are drugs that are being evaluated as disease-modifying therapy.
These are things that target the different things that we understand from the laboratory are mechanisms that, in at least some people, lead to Parkinson's and ways to stop that from happening. I show this not because you can look at it or we can talk about it, but because there's so much there that it's very hopeful to see how hard people are working to be able to come up with ways to really modify the progression of the disease or even prevent it.
With that, I'm going to stop and take questions. I wanted to first of all emphasize we could not have learned any of the things I've talked about without volunteers and research partners, people with Parkinson's and people without Parkinson's. We're tremendously indebted to everyone. It takes a village to do research, and we couldn't learn anything without your help. We have many, many different sponsors to our work, and that of course is also very important. I also want to acknowledge the many, many colleagues who've contributed to the various studies I've talked about. It's really always a group effort to learn this all.
Thank you very much.
Crista Ellis 00:33:18
Thank you, Doctor. The sun started moving on me. Let me close my blinds there. Wow. I mean, I know that our community has been asking these questions of environmental exposures, and I just thank you for the way that you've described and explained it to me and our community present today. It means a lot for us to understand where this is coming from, from the perspective of exposures. Thank you so much for your presentation.
Dr. Caroline Tanner 00:33:48
My pleasure.
Crista Ellis 00:33:49
A question. We've gotten several questions about other exposures that could be potential exposures. Particularly thinking about industrial-strength cleansers, degreasers for mechanical machines, wondering if any research has been done on Parkinson's disease and exposure to these industrial-strength cleansers.
Dr. Caroline Tanner 00:34:09
Yeah. I think part of the issue here always is: what were people really exposed to? Trying to understand the specific chemicals that they were exposed to. It's tricky work.
The solvents that I described, the chlorinated solvents themselves, are often used as degreasers, and a lot of times there are mixtures that are used. You may not even have the same mixture from one year to the next, even if you're working in the same job, in the same company and with the same brand name, because the companies will sometimes change the constitution of it. I say all of that to preface how challenging it is sometimes to be able to look at that.
The ones that so far have been identified are the ones that have been associated specifically with the chlorinated solvents. The other one that has been identified is carbon tetrachloride, which isn't used very much anymore but was a lot in the past. That doesn't mean that we aren't continuing to look at these exposures and trying to characterize other ones, but at least to my knowledge, those are the ones that have been most clearly associated with Parkinson's risk right now.
Crista Ellis 00:35:33
Thank you for clarifying that and giving us a little more perspective on what is being looked at in more depth. Appreciate that.
Curious about fumigation agents used in military aircraft. Do you know if a link exists between Parkinson's disease and fumigation agents used in military aircraft?
Dr. Caroline Tanner 00:35:56
Not yet. Again, fumigants that have been suggested to be associated with Parkinson's risk include carbon tetrachloride, which was used as a fumigant in grain silos and things like that. There are a couple of studies from a couple of decades ago that have found what appears to be an association there. There also are suggestions that either fumigants or jet fuel exposure could be associated with greater Parkinson's risk.
It's been suggested that working in aircraft, where you're in an enclosed space when you're doing the cleaning or degreasing, might be especially associated with greater risk. Those are some of the things we hope to be able to look at more carefully in the Millennium Cohort, because we'll be able to get much more detailed information from people there. So far, the way this work usually goes is that you'll have one population where someone will say, gee, it looks like there's something going on here. But then to be able to get enough information to really make a convincing case requires looking over a long period of time and a number of people where you can be sure about the exposures. It's hard work to get the data.
Crista Ellis 00:37:31
Not yet is what I've heard in the two responses so far. Thank you, Dr. Tanner.
Continuing on exposures. We've got very specific questions today about other types of exposures. Is there any research connecting triple F foam used in firefighting? Is this something you're familiar with?
Dr. Caroline Tanner 00:37:51
Okay, again, it's interesting because almost all of these have been suggested in one way or another. Not so much the foam, but the idea of being a firefighter.
There are a couple of studies that have suggested that firefighters are at greater risk of Parkinson's, and there are a number of reasons why that might be. You just heard me talking about being exposed to burn pits and toxic chemicals and fumes and particulate matter, and those are all things that firefighters, too, may be exposed to. There have been studies that have suggested firefighting as a category might be associated with a greater risk of Parkinson's. I don't know of one that has suggested a specific foam versus toxic inhalants or particulate matter.
Crista Ellis 00:38:50
That's new information for me, and I'm sure for many of those who are listening in, so thank you for sharing that.
Also, I'm just grateful to hear that we are finding more understanding of how Parkinson's disease is manifested in our community. Thank you for bringing awareness to that and our firefighters and EMS.
Coming back to TCE, has there ever been TCE testing done on drinking or bathing water that is offered on ships?
Dr. Caroline Tanner 00:39:25
Ah, I don't know.
I know that when people look, they find pretty often, as I said, in U.S. drinking water, it's like 33% of water supplies. Anecdotally, I know of a number of people with Parkinson's who tested their water and found they had TCE in it, but about ships, I don't know. It's a good question. Not sure.
Crista Ellis 00:39:53
Yeah, something to continue to be curious about.
Dr. Caroline Tanner 00:39:55
Exactly, yeah.
Crista Ellis 00:39:57
Thinking about TBIs or traumatic head — yeah, traumatic brain injury.
If you've already been diagnosed with Parkinson's disease and then have a traumatic brain injury, is there a timeline of progression or manifestation of Parkinson's disease?
Dr. Caroline Tanner 00:40:28
You've already been diagnosed with Parkinson's and then you have a head injury, that's the issue, right? Yeah. On some level, that would probably be individual. What we and others, the scientific world, have found is that head injuries do make a lot of changes in the brain. They can increase what we call inflammatory processes. They can affect what's called the blood-brain barrier, which protects the brain from external toxicant substances.
Breaking down those different things or increasing inflammatory mechanisms in general is not a good thing. What we know in general is that if you have Parkinson's and something increases inflammation, that may make your Parkinson's progress a little more rapidly. We also know, though, that you can do things to help mitigate that, including what I just said: physical activity, healthy diet, trying to eat an antioxidant diet, etcetera, can be something that could be beneficial for people even if they have had a head injury.
Those are kind of the two sides of the coin. To my knowledge, there's no systematic study that's taken people with Parkinson's after diagnosis to see if having a head injury makes the Parkinson's progress more rapidly. That is, to my knowledge at least, something that still needs to be explored.
Crista Ellis 00:42:08
Yeah. These are really tremendous questions of how much we still don't know about Parkinson's disease and how much we still need engagement from the community, as far as research participants, doctors, people involved in the research field, to help us find answers.
Dr. Caroline Tanner 00:42:28
Yeah. This is why the contribution of people as research volunteers is so important, because these are things we can only learn from talking to lots and lots of people with Parkinson's and studying their experiences and their histories and learning more about them.
Crista Ellis 00:42:46
You mentioned permethrin, just a little snippet of exposure to mosquito repellent, and one of our viewers is asking about mosquito fogging. Do you know if there's any relation to Parkinson's disease and mosquito fogging?
Dr. Caroline Tanner 00:43:03
Yeah. It's suggested but not proven. Again, some of the things that we hope to be able to explore in the military, the Millennium Cohort, are some of the, we know where things were done, we know who was there, who was deployed at certain points. We may be able to make some more precise suggestions.
Crista Ellis 00:43:29
Really interesting question here. I'm curious, Dr. Tanner, if you've had any experience with neurological problems from pilots with high-altitude cabin exposure.
Dr. Caroline Tanner 00:43:41
Hmm. No. But that is a really interesting question, isn't it? Yeah. I have not. The idea of pilots and being around jet fuel and things like that has come up, but the high-altitude cabin exposure, I don't think, is something I've heard people talk about before. But it does sound like something that might be interesting to explore.
Crista Ellis 00:44:04
Mhm, yeah. One of our viewers is asking if you know whether there are genetic blood studies done by the VA.
Dr. Caroline Tanner 00:44:14
I believe you can get certain types of genetic testing through VA. I'm not sure. It'll depend on the time of the season, the place, in terms of which specific genetic panels could be done. But I would imagine that you could have testing for the primary Parkinson's genes for sure. Of course, as I mentioned, PD GENEration, the Parkinson's Foundation, is also a way that you can have the testing and learn about your own genetic characteristics.
Crista Ellis 00:44:51
Yeah, so there are ways to do genetic testing not through blood samples, and PD GENEration offers a really simple cheek swab if you're interested in participating in genetic testing. One of my colleagues will put the link in the chat for you guys to check out, and you can do it from the comfort of your home.
Dr. Caroline Tanner 00:45:09
Yeah.
Crista Ellis 00:45:11
We got a question from someone asking if you could please speak to the relationship of PCBs to PD. I'm not quite sure what a PCB is.
Dr. Caroline Tanner 00:45:23
Okay, I will talk about that. PCBs are polychlorinated biphenyls, and they were used, I'm not sure how much they're used now, in certain industrial processes that I'm not an expert in, but that involve freezing and stuff like that. The person who asked the question could probably give us a much better description of it.
There is a suggestion of an association between PCBs and Parkinson's that came from some studies that were done in some industrial plants. They are also environmentally persistent. We have done some work that looked at people where PCBs may be bioconcentrated. There are certain areas where they can be very high in the environment, and there's a suggestion that people in those areas may have a greater risk of Parkinson's. It's another setting where there does appear to be that possibility. Again, there's a little bit of plausibility from the laboratory as well.
Crista Ellis 00:46:42
More questions about specific exposures, and this one of our community members is asking about arc welding. Is there a relationship between arc welding fumes and Parkinson's?
Dr. Caroline Tanner 00:46:56
Yes. There has been a suggestion that exposure to welding fumes and — well, take three steps back. One of the very earliest observations, which was, I don't know, maybe 70 years ago or so, a long time ago, was that miners, manganese miners, were at greater risk of developing a form of parkinsonism called manganism. It's not exactly like Parkinson's, but it affects some of the same brain areas.
Then that led to the worry that people who were welders and were exposed to manganese in the course of welding and fumes might also be at greater risk of Parkinson's. There were several studies that were done that did show a relationship between people who worked in certain types of welding and increased risk of Parkinson's. Other studies didn't replicate that. It's very hard to know why one study did find it and another study didn't find it, knowing exactly what people did all the time on the job, whether or not you use protection, what kinds of exposures, whether you were in an enclosed place when you were welding or not — all are probably things that contribute.
I would propose that the last thing is your own genetic makeup, right? Some people are going to be more vulnerable to it than others, just like some families get heart disease and other families don't get heart disease, right? It's not that everyone gets it, but it's a multifactorial condition. The same thing, I think, for some of the vulnerability to these exposures. That's a long answer to the quick answer that yes, there's some evidence to suggest there's a relationship.
Crista Ellis 00:48:46
Yeah, I really appreciate you bringing light to so many of these possibilities that could be linked to Parkinson's. As you're saying, there are suggestions related to Parkinson's disease. Thank you, Dr. Tanner.
Someone's sharing that there's a large number of bases that have reported jet fuel contamination in the ground and water. Can these be linked to Parkinson's?
Dr. Caroline Tanner 00:49:11
Possibly, and one of the things we are specifically going to look at in the Millennium Cohort study is jet fuel exposure. Yeah. That's been proposed in civilian populations in the past.
Crista Ellis 00:49:28
Something along more general lines of Parkinson's disease, and not so much about exposures to toxins, except some might consider this particular beverage a toxin, but we're asking: what are the impacts of alcohol intake on Parkinson's disease?
Dr. Caroline Tanner 00:49:49
Yeah, that's an interesting one because there isn't a strong association between alcohol intake and risk of Parkinson's. People have looked at this pretty systematically over many, many different populations, and mostly there's not a strong association. Heavy use of alcohol does damage some of the same brain areas that are affected in Parkinson's, but it causes a different kind of damage.
You can get really bad brain disease from too much alcohol, but it isn't what we think of as Parkinson's disease per se. It may have some of the same symptoms of Parkinson's disease. It's not as if it's good to excessively drink alcohol because it can be bad for you, but not so much for just classical Parkinson's disease.
Crista Ellis 00:50:46
Yeah, and this continues to be a question: how much water should people with Parkinson's be drinking?
Dr. Caroline Tanner 00:50:54
Yeah, that's a really good question because I think a lot of people with Parkinson's don't realize that you may be just a little bit more vulnerable to even mild levels of dehydration because you can have a very subtle change in what we call the autonomic, or the unconscious, nervous system that regulates things like keeping your blood pressure when you stand up or when you've been standing for a long time, or levels of sweating, things like that.
That can be just a little bit less effective in people with Parkinson's, and staying hydrated and being really attentive to the amount of water that you drink is a really good idea because it can protect you from getting lightheaded or feeling like you're a little bit faint, or even falling or passing out, which of course we wouldn't want. Being thoughtful about being in a warm environment and drinking, I don't know if there's exactly a prescription, some people say eight ounces eight times a day, but certainly being really thoughtful about making sure you have plenty of hydration all day long.
That means not caffeinated beverages because they're liquid, but in fact they're what we call diuretics, so they cause you to eliminate water, not to retain it.
Crista Ellis 00:52:21
An invitation to take a drink of water at this time.
Dr. Caroline Tanner 00:52:27
That's right. Exactly.
Crista Ellis 00:52:30
We've had a few questions about being a service member on ships submerged underwater. Is there any relationship or correlation to long periods of time serving in a submarine environment?
Dr. Caroline Tanner 00:52:46
Yeah, to my knowledge, that's not been studied. Again, important questions to explore, but I'm not aware of anyone who's studied that.
Crista Ellis 00:52:56
I really appreciate your transparency, Dr. Tanner. There's so much to explore in the field of Parkinson's and our veterans. I really admire these thoughtful questions and very intentional questions that we're getting from our community today. We have someone who's asking again about TBI, traumatic brain injuries, and just want to ask if you would speak briefly about evidence and increased prevalence of Parkinson's disease for those who have participated in sports, like football, or have experienced multiple head collisions.
Dr. Caroline Tanner 00:53:38
Yeah, I will. Before I do that, though, I just want to make one comment about the question that was just asked about being in a submarine and all the other ones that I said I don't have an answer to. It's really important that people ask these questions because asking the questions is what kind of gives us the fuel to move forward and try to explore these specific issues. So thank you for the questions.
Now to talk a little bit about traumatic brain injury in sports. There have been several studies that have looked at that. Just recently, I was part of a group that published one that was looking at American football and the relationship between having a head injury in the context of that sport and having a risk of Parkinson's, and there is an increased risk. People who played sports and had head injuries are at somewhat greater risk of Parkinson's disease, and just like we showed in the twins, there's probably a certain amount of a dose response.
Dr. Caroline Tanner 00:54:50
But the other thing that's interesting about traumatic brain injury is that people have done studies where they've looked at the metabolic function of the brain after what's thought to be a really severe head injury by the traditional classifications and a mild head injury. When you look at the functional studies, the changes aren't that different. So perhaps even mild repeated head injuries in the context of sports could be a relative risk for increased Parkinson's. It's definitely been associated. It's been seen in more than one population and more than one kind of sport that involves repetitive head injury. If you have children who are involved in sports, it's always good to make sure they take a long enough time out after having a head injury and not just pop right back in after 10 or 15 minutes. At least that's my maternal grandmaternal advice in that regard. When my daughter played soccer, she used to say, “Don't tell them you're a neurologist, Mom.”
Crista Ellis 00:56:03
Yeah, because you're extra cautious, right? You've been trained and know the severity of brain injuries. So, yeah.
Dr. Caroline Tanner 00:56:06
That's right.
Crista Ellis 00:56:14
We have one final question I'll ask before I ask for closing remarks from you, Dr. Tanner. Is there a relationship between Parkinson's disease and missile launch officers? This is from our viewer Howard.
Dr. Caroline Tanner 00:56:29
A good question that we will, again, asking these questions are the reason we can then go back to our populations and try to look at things systematically. To my knowledge, nobody's explored that question.
Crista Ellis 00:56:43
We've gotten several inquiries on how we get involved. How do we get involved in research? How can I sign up or learn more about the studies that are available either through the VA or perhaps another organization?
Dr. Caroline Tanner 00:56:55
I would say the Parkinson's Foundation is a great resource for learning how to be involved in research and figuring out which populations may be relevant for you. Thank you to everybody who is already involved.
Crista Ellis 00:57:18
Thank you, Dr. Tanner. Just letting everyone know that you'll be hanging around with us for a little while for the end of our closing statements and final question-and-answer session that we'll be sharing with Gretchen and with Dr. Welch. Thank you so much for your time today.
Dr. Caroline Tanner 00:57:33
Thank you. I should stop sharing, right? Okay.
Crista Ellis 00:57:41
And now we hear from the voice of a veteran living with Parkinson's.
Dr. Patrick Welch started his military career at 17 when he enlisted in the U.S. Marine Corps. While serving as an infantry squad leader in Vietnam, he was severely wounded in action and was hospitalized for over two years recovering from his wounds.
Dr. Welch was an international hospitality industry executive for 48 years, has worked in over 50 countries, and has been a chief financial officer, chief operating officer, chief executive officer, and owner of several businesses. He has served as director of veteran services for Erie County, New York, and as an adjunct professor at Daemen College. In January 2008, Dr. Welch became involved in the Buffalo Veterans Treatment Court as one of the first veteran mentors in the country. In 2010, he founded the Center for Veterans and Veteran Family Services at Daemen College in Amherst, New York.
Now retired, he concentrates his efforts working with veterans involved in the criminal justice system, with the Buffalo Veterans Treatment Court, Justice for Veterans, and is a Parkinson's Foundation ambassador. Dr. Welch, thank you so much for joining us today and taking the time to share your story.
Dr. Patrick Welch 00:59:07
Thank you, Gretchen. Thank you, Doctor. Greetings to everybody out there in Zoom land. We're very grateful for your participation in this webinar today.
I want to thank all of my fellow veterans who are joining us today for your service to our country. I also want to thank the spouses for putting up with us for all of this time. I also want to say hello to all my friends at the Buffalo VA, which is where I get all of my health care today.
I want to start out by giving you some statistics as to why these webinars and outreach by the VA and the Parkinson's Foundation are so important in the work that we do.
The Foundation estimates that there are about a million people with Parkinson's disease, and the VA has indicated that there are about 110,000 veterans who have Parkinson's disease. That puts the veteran population at about 11% of the total.
That means we've got over 110,000 veterans. It also means that every six minutes each day, someone is diagnosed with Parkinson's disease. So what we're talking about is that about 240 people a day are diagnosed with PD, and that equates to about 26 veterans a day who are diagnosed with Parkinson's. So it is incumbent upon us to constantly be educating and reaching out to those in the communities, in academia and in the medical community about Parkinson's disease.
I started having symptoms of Parkinson's disease about six years prior to my official diagnosis in October of 2020. I've been doing public speaking my entire life, and it was a period about five years ago that when I was doing lectures across the country, I'd break into a sweat that I just couldn't control, not knowing that that was one of the early symptoms of Parkinson's disease.
I also noticed that my handwriting was getting smaller. Usually, I write very large. That was beginning to decrease, again, not knowing that that was one of the symptoms. Then I began to lose my sense of smell.
I didn't know about these early signs until I became involved with the VA and the Parkinson's Foundation. What I want to touch on today is just a few of the things related to motor symptoms, non-motor symptoms and exercise.
Balance is a huge issue for those of us with Parkinson's disease. As we age, not only not having Parkinson's disease, but having it makes that susceptibility much greater.
We know that we spend in the healthcare industry about $50 billion a year treating people who have fallen, who have broken a hip, broken a leg, broken an arm, and the medical costs associated with that. Postural instability is one of the technical terms for it.
Another issue is slowness of movement. We begin to move slower. We start shuffling with our gait. That is another thing that we need to deal with, and part of that fits into the exercise that I'll talk about in a little while.
Dr. Patrick Welch 01:03:11
Another issue, and I'm starting to incur this, has got to do with slurring of the speech and breathing and hoarse voice.
I was at a meeting last night, and I was giving a presentation and my voice started to just trail off. I know some of the people who have more advanced Parkinson's, their speech is very hoarse when they talk. That's another thing to look at. These are all quality-of-life issues that we need to be aware of. The shuffling gait, I mentioned also, about short steps and stooped posture. We start to tend to stoop over in our walking.
Those of us who have to use a walker tend to be more stooped over if we don't extend the handles on the walker so we walk in a more upright position.
Let's talk a little bit about the mental health aspects and the non-motor issues. Depression is a huge issue for those of us with Parkinson's disease. It's very common. The statistics indicate that about 50% of those people with Parkinson's will develop some issues related to depression, related to dementia, related to hallucinations, and apathy is another issue we need to be concerned about.
I spoke last week at a seminar and a woman approached me who said her husband was recently diagnosed with Parkinson's, and he's not the same person that she's known their entire lives. The depression, the anxiety and all those other things that fit into it are symptoms of Parkinson's and things that affect us as we go on living our life.
One of the non-motor symptoms, which isn't talked about a lot, is an overactive bladder. I have been incurring issues related to overactive bladder for the last year and a half and have just recently had Botox injections into my bladder to help me with the overactive bladder. You don't hear too many people talking about that anymore.
Cognitive changes can relate to dementia, hallucinations and delusions. For those who are caretaking for us and those who have this, you need to be aware that these are just things that are going to happen to you and be able to address them and be cognizant of what you need to get care of.
We know that about 50% of the people who are diagnosed with Parkinson's disease are not under the care of a neurologist. So for those of you who are listening, if you are not engaged with a neurologist, please get to the VA and request a referral to the neurologist. Also for the spouses and caretakers, be aware of the caretaker programs that exist at all of the VA. They're very, very helpful for the family dynamic for those of you who are caring for us.
Dr. Patrick Welch 01:06:41
The last thing I want to touch on is exercise. We have a movement disorder. Exercise is a critical aspect of the treatment and our quality of life. It's recommended by the Foundation and by others that we should be having at least two and a half hours of exercise a week. That can be walking. It can be treadmill. It can be aerobic activities. It can be tai chi. It can be yoga, but all of these things related to movement are critical for us to continue with a good quality of life. Please keep that in mind.
The Whole Health program at the VA is an excellent source. It's all free. They do the tai chi, they do all the health areas related to that resistance training, exercise programs with aerobic and alternatives, as I mentioned, like yoga.
The Foundation also has a great deal of virtual programs that you can look onto, and you can participate in right in your home virtually. There are exercise programs offered on Fridays. There are mindfulness programs offered during the week. Get engaged with these programs. I can't stress enough how important it is for each and every one of us who have PD to look at these programs, to be engaged with them and to participate as much as you can and help outreach to your fellow veterans.
It's important that we spread the word because it is critical to look at those 26 a day who are being diagnosed with Parkinson's disease. Thank you for your time, and I look forward to your questions at the end.
Crista Ellis 01:08:42
Thank you, Patrick. Really appreciate the way that you continue to share so openly with the community about your Parkinson's disease and how it continues to affect you.
Patrick, we'll see you for the Q&A after Gretchen's presentation. Thank you for showing up.
Now we welcome Gretchen Glenn, a social worker and associate director of education for the Philadelphia Parkinson's Disease Research, Education, and Clinical Center. Gretchen focuses her practice on adjustment to a chronic illness, disease education, supportive counseling, resource coordination, case management, and community outreach for veterans and families diagnosed with Parkinson's disease and related movement disorders and their families.
Ms. Glenn also serves as chair of the National VA Parkinson's Disease Consortium Education Subcommittee, which is responsible for providing educational opportunities to national VA healthcare providers on the care of veterans with Parkinson's disease and related movement disorders. Ms. Glenn is passionate about helping others and has dedicated her career to helping people cope with chronic illness and end-of-life challenges. Gretchen, thanks so much for being here.
Gretchen Glenn 01:10:03
Thanks for having me. Let me get my video going here. Just trying to fix my lighting here. Alright, I'm going to pull up my ... Thanks again, Crista, for having me back to present. Thanks, Dr. Tanner, for giving such a great explanation of the extensive research that you've been doing on the toxins, as well as for our veteran community. And to Dr. Welch, for your service to our country, sharing your story and being an advocate for veterans and veterans with Parkinson's disease.
I'm trying to pull up my slides here. Can you see them okay? There you go. Okay.
Given all the information that Dr. Tanner provided today, I'm going to go over what is the VA, what are we doing to support our veterans with Parkinson's. I'm going to give an overview of the PADRECCs and our consortium centers, including the care that we provide, eligibility and care at the PADRECC and the consortium centers, and what resources are available throughout the VA.
First, just to briefly state that PADRECC stands for the Parkinson's Disease Research, Education, and Clinical Centers. They were established in 2001 to serve the then-approximate 80,000 veterans afflicted with Parkinson's. As Patrick has stated, we have known that this has now grown to over 110,000.
PADRECCs were formed to deliver state-of-the-art clinical care, research and education to an expansive geographic region, and all are staffed by internationally recognized movement disorder specialists and clinicians. There are six PADRECCs across the country in the VA medical centers. There's one in Philadelphia; Richmond, Virginia; Houston; West LA; San Francisco; and then a split center in Portland and Seattle.
As I'm going to show you on the next slide, a map of the country, the PADRECCs sort of make a necklace around the United States. So we needed to figure out how we were going to get care to all of those who don't live close to a PADRECC center. In 2003, the Consortium Center Network was introduced to promote awareness across VA by providing professional networking, mentorship and training opportunities to clinicians with an interest in movement disorders.
In 2006, the Consortium Center Network was launched to really broaden the impact and reach of the PADRECC to provide access to the specialized movement disorder care throughout the country and what we call the VISN network. Really, what we created was a hub-and-spoke model of care for veterans with Parkinson's disease.
The Parkinson's Foundation kindly developed this map that can show you the green dots represent the PADRECCs. Like I said, the PADRECC centers create sort of a necklace around the United States. The red dots represent the consortium centers. You can see that we were trying to find movement disorder specialists already available through the VA that we can refer our veterans to.
Gretchen Glenn 01:13:23
The blue dots represent the Parkinson's Foundation Centers of Excellence. You can see that there's a lot of overlap in the areas, and we do a lot of partnership with the Centers of Excellence as well. For example, we have a relationship with the University of Pennsylvania at the Philadelphia VA.
The PADRECC mission really encompasses clinical care, education and research.
This is not an exhaustive list, but just to give you some ideas of what the clinical services are available through the PADRECCs: a multidisciplinary team approach with neurologists, nurses, social workers, PT, OT, speech therapists, neuropsychologists, psychiatrists and pharmacists who have an interest and experience in working with people with movement disorders.
We do diagnosis and treatment evaluations, surgical evaluations for DBS, focused ultrasound, et cetera, for PD and essential tremor; the neurostimulation for the DBS programming; Botox injections; neuropsychological assessments; overall disease education; psychosocial assessments; palliative care and goals-of-care discussions; and, as I mentioned, referrals to our rehabilitation colleagues to really ensure that our veterans are receiving access to all the care available to them and that they may need throughout their disease process.
Our education programs are twofold. We focus on patient education as well as professional education. All of our PADRECCs host a monthly virtual support group, which you can find on our website that I have listed below. Some are starting to go back to some in-person annual symposiums. We create and distribute print materials with education, and we do a lot of community outreach to make veterans in the community aware of the PADRECCs and the services that we provide.
We also do a lot of professional education programs by doing a Movement Disorder Fellowship Program, so training neurologists in movement disorders. We also hold two movement disorder webinars a year that are about three- to four-hour webinars, educating clinicians and those interested in movement disorders on Parkinson's disease.
We also hold monthly case conferences and journal clubs for our consortium sites. Again, you can access all of this information on our website to learn more.
The PADRECCs have a really robust research program. Again, this is not an exhaustive list, and you heard a lot of what Dr. Tanner had mentioned today about the toxin exposures that have been done in the past and are continuing to go on now and in the future. We also do some surgical intervention studies. We were part of the COOP study for deep brain stimulation many years ago. Drug therapies, gait and falling, looking at depression and psychiatric problems, a lot of the non-motor symptoms. Exercise, as Dr. Welch has mentioned, the importance of exercise and looking into that more and studying it.
Gretchen Glenn 01:16:41
Basic science, which is really looking at doing lab studies, gene mapping, biomarkers, etcetera. Again, this is not an exhaustive list, but it's a pretty good representation of the different research that has been going on in the PADRECCs over the years.
How does a veteran access care through the VA? First, it depends on your eligibility. So you have to be eligible for VA healthcare. A veteran may be eligible if he or she served in active military, naval or air service and did not receive a dishonorable discharge. Some eligibility factors are service history, VA disability rating, income, and there are other factors. If you are a service-connected veteran, you are eligible for healthcare through the VA, but you still need to apply for it. Even though you may be service connected and you file that with VA benefits, it doesn't automatically enroll you in healthcare. That's something that you have to do as part of, you don't have to be enrolled in both. But it's good to be able to do that.
We strongly encourage you to enroll in VA healthcare.
The PACT Act has also expanded eligibility, and I'll talk about that a little bit further on in my presentation. It's definitely worth applying to see if you are eligible. I have the eligibility website here and also on a reference slide at the end.
Eligibility and care at a PADRECC or consortium center. The first thing is you must be enrolled in VA healthcare to receive care at a PADRECC or a consortium center. That's really your first step. Once you're enrolled, you choose the PADRECC or consortium center where you would want to go, and you can look at the various centers on our Getting Care page. Then you would ask your VA primary care provider or your VA neurologist to make a referral to a PADRECC or a consortium center.
If you need any help at all or are not sure where to start, you can call the PADRECC/Consortium Hotline. If you need any assistance with this process, we're happy to help you.
Now we'll get into the nuts and bolts of service connection and what that means. First, we really need to go over what these terms mean. They're terms that you'll hear often spoken about within the VA system, and it can be confusing. Service-connected status refers to veterans who are disabled by an injury or disease that was caused or aggravated by military service or occurred while serving in the military.
Parkinson's is a presumptive condition for some veterans, which means that it's presumed that the disability is caused by military service if you served during specific wartime and/or were exposed to certain toxin exposures. I'll talk a little bit more about that as we go on as well, what that means for the different eras.
Gretchen Glenn 01:19:36
Veterans who are service-connected will receive disability compensation, which is a tax-free monetary benefit. The amount of compensation is based on the determined level of disability, which is what Veteran Benefits determines.
Non-service-connected status refers to veterans who have a disability or health issue not related to their military service. Veterans diagnosed with Parkinson's who do not meet the criteria for a presumptive service connection may be eligible for some VA benefits under non-service-connected status. Typically, there is an income limit. Veterans who are non-service-connected may also be eligible for a VA pension, which is a tax-free monetary benefit payable to low-income wartime veterans.
A veteran would have had to have served at least one day during wartime to be eligible for a pension and meet the income requirement.
Veterans who need additional aid and attendance or housebound assistance may be able to get increased additional monetary amounts through the pension program.
Again, it's important to note you can apply for VA service connection without enrolling in VA healthcare, but we strongly recommend you do so in order to receive all the benefits that you are entitled to.
Now that I've gone over what service connection means, I can talk a little bit more about how it relates to the toxin exposures. When the PADRECCs were first established, Parkinson's disease was not a service-connected condition. But in 2010, it became a presumptive service-connected condition for Vietnam-era veterans who were exposed to Agent Orange. Over the years, they have continued to expand those locations. They've recently expanded it to include the Blue Water Navy veterans, and the PACT Act has added five new locations to the list of presumptive locations, which means if a veteran served on active duty in any of the listed presumptive locations, the VA will automatically assume or presume that they had exposure to Agent Orange.
Then in May 2021, parkinsonism was added to the list of presumptive service-connected conditions associated with Agent Orange.
In January 2017, VA announced Parkinson's disease as a presumptive service-connected condition for veterans who were stationed at Camp Lejeune for no less than 30 days between August 1, 1953, and December 31, 1987. It's important to note that parkinsonism, however, was not added to the presumptive condition list. It's just Parkinson's disease at this time.
In December 2013, Parkinson's disease and parkinsonism became recognized as secondary conditions to service-connected moderate or severe traumatic brain injury, which Dr. Tanner had mentioned in her presentation as well.
My biggest suggestion is that if you think you may have been in any of these locations or have been exposed to Agent Orange, it's worth applying and letting Veteran Benefits determine if you fit into the criteria for service connection.
Gretchen Glenn 01:23:02
Just to speak briefly about the PACT Act and Parkinson's. The PACT Act is a new law that expands VA healthcare and benefits for veterans exposed to burn pits, Agent Orange, and other toxic substances.
Parkinson's was not added to the list of presumptive conditions for Gulf War-era and post-9/11 veterans for burn pit and other toxin exposures. But the PACT Act did expand presumptive locations for Agent Orange, adding these five new locations that I have listed below.
There's even some presumption for some Air Force veterans who worked on planes that were carrying Agent Orange. We also encourage you to apply as well. Again, let Veteran Benefits determine if you fall into the criteria of eligibility for service connection.
As I said, for applying for VA service connection, how would you do that? I just want to note first that the Veterans Health Administration and Veterans Benefits Administration, we both fall under the Department of Veterans Affairs, but we function a little differently. We function separately, actually.
VHA, or the health, is the healthcare system. Veteran Benefits, VBA, is the financial benefits side that also includes vocational assistance to veterans. We don't actually have access to each other's records. That's important for saying that the best people to work with to help with submitting your claims, we really encourage you to work with a veteran service officer or a VSO who can help you in the claim process. They're the experts in the claim. They can access your benefit record and they can track it for you. The way you can do that is by calling VBA directly at the 1-800-827-1000 number, or you can contact your local county office of veterans affairs and make an appointment to meet with a veteran service officer or go to your local VA regional veteran benefits center.
The healthcare system, VHA, we can provide medical support for your diagnosis. But with determination of the actual claim, that is done by VBA only.
Gretchen Glenn 01:25:22
Once you're enrolled in VA healthcare, here are some of the benefits that you might be able to access as part of your benefit. We offer a variety of medical and support services for veterans, with several of them being of particular interest to veterans with Parkinson's. Some are based on level or percent of disability. Some depend on service connection, or there could be an income determination. There could be a co-pay for some of these programs if you're non-service-connected.
It's important to know that each medical center offers these programs to some extent, but how eligibility criteria and the referral process work could differ slightly from one VA to another. So it's really important to connect with a VA social worker at your VA to determine what's available, what the criteria for eligibility are and how you can access them. This is not, again, an exhaustive list, but these are some of the most common and most used programs that are available as part of your VA benefit: primary care services, which include pharmacy benefits, which could be more affordable than your private plan; extensive mental healthcare services; rehab services that I mentioned with PT, OT, speech, rec therapy, kinesiology; adult day healthcare programs; home health aide programs that help with personal care tasks such as bathing, dressing, grooming; respite care services to give the care partner a break; home-based primary care services, which are for veterans who can no longer make it out of the house to go to their doctors. If you live within a certain radius to a VA medical center, you might be eligible for this program, and they would actually bring the primary care team to you.
Hospice and palliative care for those who are in the later stages.
Durable medical equipment. This could be anything from button hooks and shoe horns to stair glides, wheelchairs, walkers, et cetera. It may require an evaluation by a rehab specialist to determine what is the best equipment for you and what's safe for you to use. But that's part of the benefit as well, which can be a huge cost savings for many people.
VA nursing home and contracted community nursing homes for veterans who are 70% service-connected or more. They might be eligible for VA payment of nursing home placement if you're no longer able to live in the community.
As Dr. Welch has mentioned, the caregiver support programs, which there's really two parts of that program. There's a general program, which provides peer mentoring, support and education to care partners. Then there's the comprehensive program, which in addition to the education and the support, also could provide a stipend to a spouse or a care partner to be the paid caregiver for that veteran. There, you have to be 70% service-connected or more to access that benefit, as well as need extensive supervision and assistance throughout the day.
Again, I have links to these websites that you can check out to explore further at the end of my presentation.
Gretchen Glenn 01:28:40
Who can help? Since a lot of information was shared with you today, it can often be confusing to navigate through the VA system. So who can help you is, I always say, a VA social worker. I like to refer to us as a resource person for our veterans. If we don't know the answers, we'll try to find it out and at least try to point you in the right direction. We can assess what your needs are, we can make you aware of the availability and eligibility of services, and we can be your advocate.
In terms of applying for VA disability and service connection, Veteran Service Officers can help you with all of that. They can help you with the process, which is often complicated and sometimes overwhelming, and they can monitor your claim and, again, be an advocate for you. I'd also encourage you to check out the Parkinson's Foundation frequently asked questions, which the PF and VA developed together. It goes over a lot of what we talked about today in more detail, as well as ways to connect with a VA social worker or a Veteran Service Officer. The best way to connect with a VA social worker is to talk to your VA primary care doctor.
They should all have access to a social worker on their team that they can connect you with. One thing that I didn't mention and I think is pretty important is that you don't have to give up your primary doctor in the community to receive care at the VA. You can do what's called co-practice. As long as you're seen within the VA at least one time a year, it keeps you enrolled and gives you access to VA benefits. Your primary care doctor in the community, who you may have known for a very long time and feel very comfortable with, we don't expect you to give them up. We just ask that you pick either the VA or your primary care doctor in the community to be your director of care, and we can work together to ensure that you're getting the care that you need and access to all the services that might be available to you through the VA and the community.
This is just a slide that will be sent out to you all, too, that has some important contact information on there. You can also call the PF Helpline, and they can direct you to us. Or you can call our PADRECC/Consortium Hotline, and we'd be happy to help answer as many questions as we possibly can or at least point you in the right direction.
With that, I will stop sharing.
Crista Ellis 01:31:23
Thank you, Gretchen. Really appreciate all this information. We've covered this before. It is the million-dollar question: how do we navigate veterans affairs, right? So we need to continue to repeat and encourage people to reach out to their local veteran service officers, to their PCPs, to identify that service connection so they can get the benefits that they deserve.
Gretchen Glenn 01:31:51
Absolutely.
If you haven't registered before or thought that maybe it wouldn't be for you, I wouldn't rule it out. You don't know until you apply and let them make the determination of eligibility. Because it could really open up a wealth of resources and services that we don't have as much in the community. We are very lucky in the VA to be able to provide some of the services that we do.
Crista Ellis 01:32:18
Patrick, I see you're joining us. I have a question for you. I want to be sure that we touch on, and I know that we've gone over time, so thank you all for continuing to stay present with us. Patrick, just thinking about your experience with claiming health benefits with the VA, how was the process for you?
Dr. Patrick Welch 01:32:41
My process was very easy. When I came back from Vietnam, I wound up in the VA hospital in 1966, and I was very fortunate to be connected to a veteran service officer from the Disabled American Veterans, and he got me into the system right away. So I've been a patient of the VA since 1966.
The early stages were not great, but the VA is much, much better than it was in 1966.
If I could just hitchhike on something that Gretchen mentioned, I always tell veterans there's two reasons that they need to be registered with the VA healthcare system. Number one is that they may need the VA at some point in their life. If they're already registered in the system, getting access to benefits is much, much easier. As Gretchen mentioned, you don't have to be in the VA for all of your healthcare, but as long as you're there once a year, it keeps your file active.
The second reason why it's important for veterans to be registered is the VA's healthcare and budget is based upon registered veterans. So even if you don't use the VA regularly, your numbers are critical in the budgetary process, and that means benefits are going to flow, money is going to flow to your local medical center. So I encourage everyone who's on this call, if they're not registered, to get registered and encourage their fellow veterans to get registered with VA healthcare. It's critical for dollars to be flowing to the VA.
Crista Ellis 01:34:30
Did you have a comment, Gretchen?
Gretchen Glenn 01:34:32
No, I was just saying I agree with Patrick on that for sure.
Crista Ellis 01:34:35
I wanted to get clarification in one of the final statements that you made, Gretchen, about still having access to your primary care physician, but also having access to a veteran-specific, a VA-specific doctor. Does this also include a specialist? So say you have a movement disorder specialist who is not connected to the VA, you also have a primary care physician who's not connected to the VA, but you also have a veteran-specific doctor.
Gretchen Glenn 01:35:04
Yeah, we are totally fine with that. Again, we just ask that you pick who's going to be your director of care because we don't want two doctors messing around with medications and not communicating with each other. So we would, if you chose to have your community neurologist manage your Parkinson's, your PADRECC provider would just give an update and give suggestions to that community neurologist, who would ultimately make that decision. That's totally fine with us. We understand that people have connections with doctors that they may have seen for a long time.
Crista Ellis 01:35:41
Thank you for clarifying that. I'd like to invite Dr. Tanner to join us on screen again. In our closing, I would like to hear from each of you any words that you might share with our community as we round out our final webinar of this year.
Dr. Patrick Welch 01:36:01
I'd just like to jump in.
Gretchen Glenn 01:36:03
Oh, go ahead, Patrick.
Dr. Patrick Welch 01:36:04
No, ladies first.
Gretchen Glenn 01:36:07
Well, I just want to thank everybody for joining these webinars. I want to thank our veterans for your service, our care partners for the care that you provide, the Parkinson's Foundation for the continued partnership to help spread awareness about the services available at the VA. I just want to strongly encourage our veterans who have not enrolled in VA healthcare to consider it, to check us out, call if you have any questions or need help doing it. We just want to make sure that you're getting access to all the services that you're entitled to.
Dr. Caroline Tanner 01:36:45
Right. Okay.
Well, yes, I just echo what everyone said. I wish I could see you all, but I'm so glad to know that you're there, or the people who aren't there but may hear this later. Thank you to everyone for your service and for your interest and participation in research. I echo the comments of the two later speakers that connecting to VA care is really important, I think.
It's also important to help us to understand more about the exposures that are related because much of the work that I've talked to you about has relied heavily on the information we could understand because people got part of their care at VA, and we were able to understand things about them or their disease and what the characteristics were, the things that they experienced, because we could look at VA records, for example, or sometimes people volunteered to be evaluated.
So that's also another aspect of being part of VA that can be very helpful, learning more about service-related exposures and how that might be related to Parkinson's or related disorders. So thank you for that as well. I'll just take one little moment. When I was listening to Patrick talk about balance, I wanted to mention there's another study that we're doing in combination with the Parkinson's Foundation that is a fracture prevention study. It's a national study, it's a home-based study, and it's supported by the National Institutes of Health, the Aging Institute.
They're going to share the website for that study. This is a very broad study. You don't even have to go into the clinic. You can enroll and be treated at home. It's another partnership with the Foundation, who are helping us. The same Helpline will be able to help you understand more about it as well as the website.
Dr. Patrick Welch 01:38:54
I'll throw in a final comment then. Again, I want to reiterate how grateful I am to each and every one of you who have served this country. If it were not for you, this country would not exist. We owe you a wonderful debt of gratitude. I want you all to be aware of all of the resources that are available to you through the VA, through the Parkinson's Foundation, to help you with your quality of life and support your people who are taking care of you.
God bless you all and God bless America. Thank you.
Crista Ellis 01:39:38
On behalf of the Parkinson's Foundation, I want to thank our panelists, Ms. Gretchen Glenn, Dr. Caroline Tanner and Dr. Patrick Welch.
Thank you so much for your participation today. Really appreciate everyone who was present today to learn more and gain better understanding of what it means to be a veteran living with Parkinson's disease. I know we had several questions we couldn't get to, and I apologize. We are on a time crunch, so please do not hesitate to reach out to our Helpline by calling 1-800-4PD-INFO. You can email us at Helpline@Parkinson.org. You can use that same contact information to order our free resources, educational book series and our hospital safety guide. We thank you for joining us today.
We hope to see you again soon somewhere on the other side of Zoom land. Until then, be well, happy holidays.
