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All across America and around the world, this is Veterans Radio.

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This is Veterans Radio.

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Welcome to Veterans Radio.

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I am Jim Fausone.

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I'm the officer of the deck today.

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We've got some great programs for you.

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I think you'll find very interesting.

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We always want to remind you you can find more about Veterans Radio at its Facebook site

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or at the web.

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VeteransRadio.org is our new URL, VeteransRadio.org.

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Where we're on the web 24-7, you can find a lot of our podcasts there as well.

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We post new ones every Tuesday, so you can get a new story, a new interview, something

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you didn't know before by going to VeteransRadio.org.

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And before we get started, we want to thank our sponsors.

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First up, we want to thank National Veteran Business Development Council, NVBDC.org.

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It was established to certify both service disabled and veteran owned businesses.

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You'll find out how they can help your business by going to NVBDC.org.

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We want to thank Legal Help for Veterans.

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Legal Help for Veterans fights for veterans disability rights all across the nation.

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You can reach them at 800-693-4800 or on the web at LegalHelpForVeterans.com.

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We want to welcome to VeteransRadio today a couple of gentlemen.

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We're going to talk about Parkinson's disease and its involvement in relationship with veterans

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in your service.

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We're going to talk to Mark Kelm.

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Mark, welcome to VeteransRadio.

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Well, thanks very much, Jim.

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Mark, we'll talk about his military service here shortly.

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But we also have on the line John Lair, who's the CEO of the Parkinson's Foundation.

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John, welcome to VeteransRadio.

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Thank you so much, Jim.

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It's a pleasure to be here.

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Mark, let's start with you.

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Nice kid like you from Minnesota.

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You joined the Army Reserves in 1989.

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You serve on active duty for a few years.

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You spent some time in the National Guard.

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You held a role as a military chaplain.

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Flesh that out a little bit.

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Tell us some more about your military service.

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Sure.

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From 1989 until 1996, I was an enlisted guy.

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I served in the 205th Arctic Light Infantry in the Army Reserves and then transferred

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over to the 34th Infantry Division with the Minnesota Army National Guard.

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In 1996, I was commissioned in Austin as a second lieutenant.

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I served in the New York Army National Guard and had active duty time on after that.

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So it's kind of a career that went from 1989 to 2006.

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I loved almost every moment of it.

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Nobody believes it if you say you loved 100% because we all had those situations like

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what the heck did I volunteer for?

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Exactly.

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But proud to serve and actually found a lot of the people who served along with me are

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some of my lifelong friends that I know I could call up at any moment and they'd be

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here for me.

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And they certainly have.

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During my trials and tribulations, living with young onset Parkinson's disease.

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Well, let's start there a little bit too because that's what we're focusing on is explain

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to people what the Parkinson's disease is about.

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Yeah, so Parkinson's disease can be caused either by genetics or environmental factors

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or a combination of both.

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It actually is the cells within your basal ganglia that create dopamine are dying or

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collapsing in on themselves.

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And so when you don't have dopamine, it's like a car engine that doesn't have oil.

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It's going to seize up.

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When it seizes up, it causes certain symptoms.

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Some of the cardinal symptoms of Parkinson's is the tremor that you might find.

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Often you'll see it in someone's hand.

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Visibly, it could be in their leg.

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They could have an internal tremor.

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You'll notice slowness of movement, rigidity within your muscles.

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Balance can become an issue with people with Parkinson's.

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So there's a constellation of things that Parkinson's can have and not everyone has

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all of the symptoms.

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Some people have worsening of their tremor.

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Other people, their tremor is well-controlled with levodopa, the medicine that we take,

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but their balance isn't helped.

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So you never really know exactly how it's going to affect you compared to everyone else.

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And John, let me bring you in on this.

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Maybe you want to expand a little bit about the longevity of this disease process and

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what folks experience over time.

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Yeah.

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So I'll just say Parkinson's disease affects 1 million Americans, and we have a new study

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that shows that each year 90,000 individuals are nearly diagnosed with the disease, which

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is a 50% increase over prior estimates.

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What we always say about Parkinson's is it is primarily a disease of aging.

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That is the number one risk factor for Parkinson's is age.

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So the older you get, the greater the likelihood that you may develop Parkinson's.

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But again, it's a relatively rare disease, not a rare disease, but relatively rare disease.

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And as I said, people will develop it, let's say, in their early 60s and may live a full

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and long life.

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They may have a fairly benign course of disease.

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Some people have a much more aggressive course of disease and may not live as long as you

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would hope.

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And then about 4% to 5% of people are classified as young onset Parkinson's disease.

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Those are people who are diagnosed before the age of 50.

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For people with young onset Parkinson's, we see them living for many, many years.

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But we say at the Parkinson's Foundation, and you'll hear this throughout the community,

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that no two people will have the same course of disease.

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It's a very idiosyncratic disease.

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So somebody with a lot of symptoms and a lot of restrictions on their lives may be living

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next door to somebody who's living relatively without a lot of complications from Parkinson's.

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But it is a tough disease.

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It's progressive.

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It's degenerative.

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Every day is going to be a little bit, maybe not measurable, but a little bit harder than

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the day before.

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Yeah, and I think most folks have some understanding of it.

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They've probably seen Michael J. Fox on TV talking about the disease and the work that

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he does in this area and the fundraising and volunteer work.

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One of the things that you've done, Mark, is sort of taken your experience as you've

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now gotten out of the military and had to stop working full time because of Parkinson's.

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And you've really put that energy into volunteering in the Parkinson's community.

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Tell us some about your work in that space.

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Yeah, for me, living with early onset or young onset Parkinson's disease has encouraged

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me to say, I don't want to stop living.

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I want to get off the bench and be in the game.

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And so I started in annual Parkinson's Awareness Day at Target Field in partnership with the

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Minnesota Twins.

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I've organized events such as Trivia Fundraiser Night to Raise Funds for the Minneapolis Space

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Struthers Parkinson's Center, which is a center of excellence for the Parkinson's Foundation.

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About the American Legion heavily involved here, Chesterbird American Legion in Golden

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Valley, Minnesota, to raise funds for Parkinson's as well.

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I've taken on the role of National Chair of the Parkinson's Foundation, People of Parkinson's

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Council, which ensures that the perspective of people living with Parkinson's is integrated

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into the Foundation's programs, development, and priority settings.

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I volunteer on the U.S. Department of Defense's Congressionally Directed Medical Research

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Program.

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The Parkinson's Research Program is a consumer advocate participating in the evaluation of

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research applications.

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And I also participate in Moving Day Twin Cities.

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And my youngest daughter took over for my oldest daughter, serving on the Twin Cities

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Chapter Board for Moving Day.

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Let's make a little more connection here between veteran status and service and the possibility

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of Parkinson's.

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I've read that there's about 110,000 veterans with Parkinson's disease who receive care

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through the VA hospital.

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And there is such a connection and a kind of empirical studies that the VA recognizes

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Parkinson's disease as a presumptive illness from exposure to Agent Orange and other herbicides

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that one gets exposed to during military service.

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Major on DOD committees, talk to us about what veterans ought to be thinking about as

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it relates to, did I get exposed?

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Is Parkinson's related and why that's important?

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Sure.

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As you mentioned for our Vietnam era veterans who experienced Agent Orange, 50% of the active

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ingredient, Agent Orange, is a chemical known as 2,4-D, which, amongst causing things like

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cancer, it also can cause Parkinson's later on in life.

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And that's something that became presumptive.

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So if you have Parkinson's, you served in country in Vietnam, you can end up having a

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service connection between the two and get the help that you need from the VA.

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I'm one of the 110,000 veterans who works with the VA on healthcare, and they've done

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a great job for me and for my family.

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It's not just the Vietnam era, though, with Agent Orange.

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There's also Desert Storm people, people in training in the military who received traumatic

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brain injuries during their service.

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If you have in your medical history a TBI that was considered moderate or above, you

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actually can be service connected with your Parkinson's disease if you have that diagnosis.

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Chemical exposures go way beyond Agent Orange in Vietnam.

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We know with Iraq and Afghanistan that the burn pits that were there, we're seeing Parkinson's

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come out from troops who were living nearby or working in and through those burn pits.

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And so there's different ways that the military community can end up having experiences such

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as traumatic brain injuries from IEDs during training incidents, during combat, along with

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chemical exposure that is seeing a rise amongst the veteran community compared to the civilian

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community.

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And so we're trying to raise awareness saying, hey, if you have any of these cardinal symptoms

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of Parkinson's, go in and get checked out.

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And it's important because the things key, medical science and VA's understanding of

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things keep evolving, just like they've, they said, okay, well, we used Agent Orange in

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Vietnam.

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We'll admit we used it in Korea, the PACT Act now says, oh yeah, well, we used it in

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Thailand and Guam and there's some places in the US.

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So there's sort of an evolving exposure opportunities.

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You might have known you were exposed, although they don't recognize it yet or they're just

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beginning to recognize it.

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So this is not something that you just say, well, they said no, so I walk away.

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And it's important, isn't it, because it gives, it gives the veteran and may give them disability

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benefits.

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But more importantly, it also gives you some healthcare benefits that take a lot of pressure

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off the family, I suppose.

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Absolutely, Jim.

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You know, from the military training, we're taught never give up, never surrender, adapt

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and overcome, right?

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And so even if the VA says no, it doesn't mean you need to quit.

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We now know like Camp Lejeune, the drinking water in Camp Lejeune.

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Excellent point, yeah.

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Yeah, right.

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So those troops who served now over 30 days, 30 days and over in Camp Lejeune and were

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drinking the water and they have Parkinson's disease diagnosis can be service connected

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now where for decades, the VA said no, now there's a service connection that's going

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to be automatic for them.

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And so even if you've been said no, don't give up the fight.

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Well the other thing, and I'll jump back over to in a moment here to John, but Mark, one

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of the things you and I were talking about before we got started was that, you know,

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a private medical physician is going to look at a veteran a certain way whereas a VA doctor

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who knows what you went through is going to look at you a little bit different and you've

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kind of experienced that, I suspect.

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Absolutely, you know, there is a difference.

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A lot of times civilian doctors and neurologists don't even ask us about our military experience.

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It's not in the forefront of their mind when they're thinking of what the diagnosis might

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be.

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There currently isn't a test that's widespread that's used right now to detect Parkinson's.

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It's really the neurologist looking at you and excluding everything else first.

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So we really want to make sure that if you serve in the military, you had chemical exposure,

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you had traumatic brain injuries, that you make sure you say something to your doctor

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because they can start connecting the dots then.

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And the VA doctors within neurology, some of them are the best.

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I work with Scott Lewis out of the Minneapolis VA.

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He is absolutely outstanding where he does take the time to read through a person's military

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file or 201 file to find out what experiences you had and what that could do in relation

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to your health.

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John, is it one of the frustrating things for patients and Mark just referenced it?

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Well they exclude everything else that you must have Parkinson's.

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Talk to us about how that diagnosis comes about and what resources does the Parkinson's

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Foundation have for those who might be thinking, I don't know if I should, I'm asking the right

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questions here.

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Yeah, it's a really great question.

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So one of the biggest challenges in the Parkinson's space is that a diagnosis of Parkinson's

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is done clinically.

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I have type 2 diabetes and you can get a blood test and an A1C test to say, look, your blood

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sugar is too high whether it's on a daily basis or over a longer term period.

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But in Parkinson's there is no clear and widely used biomarker.

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So clinical diagnosis happens when you go in, you start to suspect yourself of having

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something that's not quite right.

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So you go in often to your primary care physician and they start to look at you and if they

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see the resting tremor or they see some challenges with your gait or your stability or your walking,

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then they'll probably refer you to a neurologist who will make the clinical diagnosis.

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One of the interesting breakthroughs that's happening right now is we're in the hunt for

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good biomarkers.

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And about a year ago there was a study that came out that said you could see alpha-synuclein

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aggregation in spinal fluid.

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So alpha-synuclein, Mark was talking earlier about what Parkinson's is within the basal

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ganglia.

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But essentially what happens is you get this aggregation of alpha-synuclein which kills

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off your dopamine neurons.

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And so if you can find that aggregation in spinal fluid early on, that means you could

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be diagnosed much earlier and get on a treatment regimen earlier, start exercising anew and

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all the things that you need to do to take care of yourself.

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But more recently there's a study that's come out showing that you can find alpha-synuclein

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aggregation in skin biopsies, a much less demanding way to get biomarkers than a spinal

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tap for sure.

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So there's a lot of progress being made on improving the diagnosis of Parkinson's disease

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and essentially setting the clock backward a little bit or forward whatever the right

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way to do it is so that you can get diagnosed earlier with more definitiveness.

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Hey, John Laird, who's the CEO of the Parkinson's Foundation.

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If people want to find more about what the foundation has available in terms of resources,

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where would they go?

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Yeah, the best place to go is to our website which is Parkinson.org.

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I can tell you, Jim, we're pleased to report within the last week that we had 7 million

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unique visits to our website this year which is a record for us.

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That means a lot of people are going to our website multiple times to get the information

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they need.

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But we also have a helpline which is 800-4, the number 4, he has Parkinson's D disease

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info, INFO, so that's 800-4-PD-INFO.

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And so our helpline is staffed by medical professionals who are experts in Parkinson's

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care and we field about 25,000 calls a year.

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A lot of times people are just asking what is Parkinson's, where might I get treatment,

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what are these signs or symptoms about, a lot of referrals.

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But our people will be on the phone with people for maybe as short as a minute but as long

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as an hour or so.

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So that's another resource for people.

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And if a military veteran calls in, John and says, hey, I was in the service, is that

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something your folks are attuned to?

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Absolutely.

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And as we mentioned at the top of the call, there are 110,000 individuals in the United

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States who are veterans who live with Parkinson's disease.

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That's 10% of the overall population.

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So we offer a lot of things.

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We have a whole guide, Frequently Asked Questions Guide, which is specifically developed for

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people with, for veterans living with Parkinson's disease.

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We also offer a Veterans and PD webinar series.

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So it covers all topics that are important to veterans around planning for the future,

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environmental exposure, managing mental health issues.

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And as I said, we have our website which says General Information and then our helpline

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that can get much more specific.

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And those people on our helpline, they speak to a lot of veterans and they're very good

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at addressing veteran issues.

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Well as we know, it's not just the patient, it's the whole family that has to address

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these issues.

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Mark, you're particularly lucky in your faith and in your family.

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Your wife in particular, you want to talk a little bit about the importance of those

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issues?

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Absolutely.

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They have three kids, a 22-year-old, a 20-year-old, and a 16-year-old, a wife of 23 years.

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And I've been absolutely blessed by that.

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They are my support network that helps me live well with Parkinson's.

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A lot of times people, when they find out that I have Parkinson's, will say, I'm sorry.

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And I'm like, nothing to be sorry for, right?

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I'm living well with Parkinson's.

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Getting the diagnosis for me was not a death sentence.

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It was information.

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It was information about what was going wrong with my body and how I could work with the

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Parkinson's Foundation to learn to live the best quality of life that I can.

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And also for my family to understand how they can support me better in living a quality

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life.

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Yeah, and one of the things I want to tie back to veterans and why, if you're a veteran

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or a family member or friend, you want to think about this connection, if your Parkinson's

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is connected to your military service, the VA has a lot of programs for caregivers as

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well.

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And I don't know if you've used any of those yet, Mark, or if you had to go ahead and talk

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a little bit about the support that VA gives to its caregivers.

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Yeah, so the caregivers themselves have classes where they meet together once a month.

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My wife has been part of this.

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Part of it is just a social time for spouses and partners, significant others, caregivers

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in our life.

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There's even children who are caregivers who will end up logging on and half time is

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spent socializing, supporting one another.

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And the other half of the time is getting information.

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They'll have doctors speak, physical therapists, occupational therapists, speech therapists,

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each giving information to caregivers to help them better understand what's happening

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during the progression of the disease and how they can assist their loved one.

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For veterans, the Parkinson's Foundation also has a specific spot on our website that you

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can go to and get great information.

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As our CEO, John Laird, said, go to Parkinson.org, T-A-R-K-I-N-S-O-N, dot O-R-G, and then add

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slash veterans, Parkinson.org slash veterans, V-E-T-E-R-A-N-F.

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And there's an amazing amount of resources there to help the veteran community.

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Well, I mentioned this too in setting up this interview with John Laird, CEO of Parkinson's

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Foundation and Army and National Guard veteran, Mark Kilm, that I have some family involvement

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here.

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And actually, I'm kind of dedicating this interview to my uncle John Roy, who is an

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Air Force veteran, because he was a caregiver for probably 30 years to my aunt Joanne, who

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had Parkinson's and ultimately subcombed to it last year.

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You don't die from Parkinson's, you die from all the other stuff that kind of goes along

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with it.

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And I think it's important that we get out and have these kind of discussions, and people

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aren't either super afraid of the disease or think, as Mark you mentioned, it's not

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a death sentence.

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You just have to, I think, I like your language.

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You have to learn to live well with the disease.

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And I think that's the great spirit and the fighting spirit that I'd expect somebody from

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the Army to give me.

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Any final words here, Mark?

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Don't be afraid to ask for support.

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I have asked for and received support from my friends, family, medical team, and faith

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community.

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You don't have to do this alone.

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You're not a one man Army.

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John, any final words for our veteran radio listeners?

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Yeah, well, just first to thank you, Jim, for putting a spotlight on veterans who are

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living with Parkinson's disease.

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And to thank Mark Kelm, who also serves as our chair of our Parkinson's Policy Advisory

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Council and does an outstanding job on that.

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He keeps us well advised on all the issues related to living with this disease.

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We're really grateful for the opportunity.

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And just to thank all the veterans who served and then all the veterans who, unfortunately,

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have come down with this difficult disease.

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We're here to help in any way we possibly can.

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Well, I want to thank both of you for helping get this information out.

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And again, we had to kind of adjust schedules.

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And I really appreciate everybody being available.

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Thank you.

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Thank you, Jim.

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Appreciate it.

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And I want to thank everybody for listening to Veterans Radio today.

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I am Jim Fawcone.

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It's been a pleasure to be your host.

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I'm a Veterans Disability Lawyer at Legal Help for Veterans.

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And you can reach us at 800-693-4800 or legalhelpforveterans.com on the web.

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You can follow Veterans Radio on Facebook and listen to its podcasts and internet radio

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shows by visiting us at veteransradio.org.

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That's veteransradio.org.

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And until next time, you are dismissed.

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If you have a VA claim denied by the Board of Veterans Appeals, contact Legal Help for

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Veterans at 1-800-693-4800.

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They're experts in handling cases before the U.S. Court of Appeals for Veterans Claims.

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Their number again, 1-800-693-4800.

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We again want to thank our national sponsors, the National Veterans Business Development

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Council, NVBDC.org, VA Ann Arbor Health Care System, the Vietnam Veterans of America, Charles

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00:24:57,720 --> 00:25:06,440
S. Kettles Chapter, Ann Arbor, Michigan, VFW Graf O'Hara Post 423 in Ann Arbor, and

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the American Legion Press Corn Post 46 also in Ann Arbor.

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We appreciate all your support.

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You can go to veteransradio.net.

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Click on the sponsor level and continue to support keeping veteransradio on the air.

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And until next time, you are dismissed.