All across America and around the world, this is Veterans Radio.
This is Veterans Radio.
Welcome to Veterans Radio.
I am Jim Fausone.
I'm the officer of the deck today.
We've got some great programs for you.
I think you'll find very interesting.
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you didn't know before by going to VeteransRadio.org.
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You'll find out how they can help your business by going to NVBDC.org.
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Legal Help for Veterans fights for veterans disability rights all across the nation.
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We want to welcome to VeteransRadio today a couple of gentlemen.
We're going to talk about Parkinson's disease and its involvement in relationship with veterans
in your service.
We're going to talk to Mark Kelm.
Mark, welcome to VeteransRadio.
Well, thanks very much, Jim.
Mark, we'll talk about his military service here shortly.
But we also have on the line John Lair, who's the CEO of the Parkinson's Foundation.
John, welcome to VeteransRadio.
Thank you so much, Jim.
It's a pleasure to be here.
Mark, let's start with you.
Nice kid like you from Minnesota.
You joined the Army Reserves in 1989.
You serve on active duty for a few years.
You spent some time in the National Guard.
You held a role as a military chaplain.
Flesh that out a little bit.
Tell us some more about your military service.
Sure.
From 1989 until 1996, I was an enlisted guy.
I served in the 205th Arctic Light Infantry in the Army Reserves and then transferred
over to the 34th Infantry Division with the Minnesota Army National Guard.
In 1996, I was commissioned in Austin as a second lieutenant.
I served in the New York Army National Guard and had active duty time on after that.
So it's kind of a career that went from 1989 to 2006.
I loved almost every moment of it.
Nobody believes it if you say you loved 100% because we all had those situations like
what the heck did I volunteer for?
Exactly.
But proud to serve and actually found a lot of the people who served along with me are
some of my lifelong friends that I know I could call up at any moment and they'd be
here for me.
And they certainly have.
During my trials and tribulations, living with young onset Parkinson's disease.
Well, let's start there a little bit too because that's what we're focusing on is explain
to people what the Parkinson's disease is about.
Yeah, so Parkinson's disease can be caused either by genetics or environmental factors
or a combination of both.
It actually is the cells within your basal ganglia that create dopamine are dying or
collapsing in on themselves.
And so when you don't have dopamine, it's like a car engine that doesn't have oil.
It's going to seize up.
When it seizes up, it causes certain symptoms.
Some of the cardinal symptoms of Parkinson's is the tremor that you might find.
Often you'll see it in someone's hand.
Visibly, it could be in their leg.
They could have an internal tremor.
You'll notice slowness of movement, rigidity within your muscles.
Balance can become an issue with people with Parkinson's.
So there's a constellation of things that Parkinson's can have and not everyone has
all of the symptoms.
Some people have worsening of their tremor.
Other people, their tremor is well-controlled with levodopa, the medicine that we take,
but their balance isn't helped.
So you never really know exactly how it's going to affect you compared to everyone else.
And John, let me bring you in on this.
Maybe you want to expand a little bit about the longevity of this disease process and
what folks experience over time.
Yeah.
So I'll just say Parkinson's disease affects 1 million Americans, and we have a new study
that shows that each year 90,000 individuals are nearly diagnosed with the disease, which
is a 50% increase over prior estimates.
What we always say about Parkinson's is it is primarily a disease of aging.
That is the number one risk factor for Parkinson's is age.
So the older you get, the greater the likelihood that you may develop Parkinson's.
But again, it's a relatively rare disease, not a rare disease, but relatively rare disease.
And as I said, people will develop it, let's say, in their early 60s and may live a full
and long life.
They may have a fairly benign course of disease.
Some people have a much more aggressive course of disease and may not live as long as you
would hope.
And then about 4% to 5% of people are classified as young onset Parkinson's disease.
Those are people who are diagnosed before the age of 50.
For people with young onset Parkinson's, we see them living for many, many years.
But we say at the Parkinson's Foundation, and you'll hear this throughout the community,
that no two people will have the same course of disease.
It's a very idiosyncratic disease.
So somebody with a lot of symptoms and a lot of restrictions on their lives may be living
next door to somebody who's living relatively without a lot of complications from Parkinson's.
But it is a tough disease.
It's progressive.
It's degenerative.
Every day is going to be a little bit, maybe not measurable, but a little bit harder than
the day before.
Yeah, and I think most folks have some understanding of it.
They've probably seen Michael J. Fox on TV talking about the disease and the work that
he does in this area and the fundraising and volunteer work.
One of the things that you've done, Mark, is sort of taken your experience as you've
now gotten out of the military and had to stop working full time because of Parkinson's.
And you've really put that energy into volunteering in the Parkinson's community.
Tell us some about your work in that space.
Yeah, for me, living with early onset or young onset Parkinson's disease has encouraged
me to say, I don't want to stop living.
I want to get off the bench and be in the game.
And so I started in annual Parkinson's Awareness Day at Target Field in partnership with the
Minnesota Twins.
I've organized events such as Trivia Fundraiser Night to Raise Funds for the Minneapolis Space
Struthers Parkinson's Center, which is a center of excellence for the Parkinson's Foundation.
About the American Legion heavily involved here, Chesterbird American Legion in Golden
Valley, Minnesota, to raise funds for Parkinson's as well.
I've taken on the role of National Chair of the Parkinson's Foundation, People of Parkinson's
Council, which ensures that the perspective of people living with Parkinson's is integrated
into the Foundation's programs, development, and priority settings.
I volunteer on the U.S. Department of Defense's Congressionally Directed Medical Research
Program.
The Parkinson's Research Program is a consumer advocate participating in the evaluation of
research applications.
And I also participate in Moving Day Twin Cities.
And my youngest daughter took over for my oldest daughter, serving on the Twin Cities
Chapter Board for Moving Day.
Let's make a little more connection here between veteran status and service and the possibility
of Parkinson's.
I've read that there's about 110,000 veterans with Parkinson's disease who receive care
through the VA hospital.
And there is such a connection and a kind of empirical studies that the VA recognizes
Parkinson's disease as a presumptive illness from exposure to Agent Orange and other herbicides
that one gets exposed to during military service.
Major on DOD committees, talk to us about what veterans ought to be thinking about as
it relates to, did I get exposed?
Is Parkinson's related and why that's important?
Sure.
As you mentioned for our Vietnam era veterans who experienced Agent Orange, 50% of the active
ingredient, Agent Orange, is a chemical known as 2,4-D, which, amongst causing things like
cancer, it also can cause Parkinson's later on in life.
And that's something that became presumptive.
So if you have Parkinson's, you served in country in Vietnam, you can end up having a
service connection between the two and get the help that you need from the VA.
I'm one of the 110,000 veterans who works with the VA on healthcare, and they've done
a great job for me and for my family.
It's not just the Vietnam era, though, with Agent Orange.
There's also Desert Storm people, people in training in the military who received traumatic
brain injuries during their service.
If you have in your medical history a TBI that was considered moderate or above, you
actually can be service connected with your Parkinson's disease if you have that diagnosis.
Chemical exposures go way beyond Agent Orange in Vietnam.
We know with Iraq and Afghanistan that the burn pits that were there, we're seeing Parkinson's
come out from troops who were living nearby or working in and through those burn pits.
And so there's different ways that the military community can end up having experiences such
as traumatic brain injuries from IEDs during training incidents, during combat, along with
chemical exposure that is seeing a rise amongst the veteran community compared to the civilian
community.
And so we're trying to raise awareness saying, hey, if you have any of these cardinal symptoms
of Parkinson's, go in and get checked out.
And it's important because the things key, medical science and VA's understanding of
things keep evolving, just like they've, they said, okay, well, we used Agent Orange in
Vietnam.
We'll admit we used it in Korea, the PACT Act now says, oh yeah, well, we used it in
Thailand and Guam and there's some places in the US.
So there's sort of an evolving exposure opportunities.
You might have known you were exposed, although they don't recognize it yet or they're just
beginning to recognize it.
So this is not something that you just say, well, they said no, so I walk away.
And it's important, isn't it, because it gives, it gives the veteran and may give them disability
benefits.
But more importantly, it also gives you some healthcare benefits that take a lot of pressure
off the family, I suppose.
Absolutely, Jim.
You know, from the military training, we're taught never give up, never surrender, adapt
and overcome, right?
And so even if the VA says no, it doesn't mean you need to quit.
We now know like Camp Lejeune, the drinking water in Camp Lejeune.
Excellent point, yeah.
Yeah, right.
So those troops who served now over 30 days, 30 days and over in Camp Lejeune and were
drinking the water and they have Parkinson's disease diagnosis can be service connected
now where for decades, the VA said no, now there's a service connection that's going
to be automatic for them.
And so even if you've been said no, don't give up the fight.
Well the other thing, and I'll jump back over to in a moment here to John, but Mark, one
of the things you and I were talking about before we got started was that, you know,
a private medical physician is going to look at a veteran a certain way whereas a VA doctor
who knows what you went through is going to look at you a little bit different and you've
kind of experienced that, I suspect.
Absolutely, you know, there is a difference.
A lot of times civilian doctors and neurologists don't even ask us about our military experience.
It's not in the forefront of their mind when they're thinking of what the diagnosis might
be.
There currently isn't a test that's widespread that's used right now to detect Parkinson's.
It's really the neurologist looking at you and excluding everything else first.
So we really want to make sure that if you serve in the military, you had chemical exposure,
you had traumatic brain injuries, that you make sure you say something to your doctor
because they can start connecting the dots then.
And the VA doctors within neurology, some of them are the best.
I work with Scott Lewis out of the Minneapolis VA.
He is absolutely outstanding where he does take the time to read through a person's military
file or 201 file to find out what experiences you had and what that could do in relation
to your health.
John, is it one of the frustrating things for patients and Mark just referenced it?
Well they exclude everything else that you must have Parkinson's.
Talk to us about how that diagnosis comes about and what resources does the Parkinson's
Foundation have for those who might be thinking, I don't know if I should, I'm asking the right
questions here.
Yeah, it's a really great question.
So one of the biggest challenges in the Parkinson's space is that a diagnosis of Parkinson's
is done clinically.
I have type 2 diabetes and you can get a blood test and an A1C test to say, look, your blood
sugar is too high whether it's on a daily basis or over a longer term period.
But in Parkinson's there is no clear and widely used biomarker.
So clinical diagnosis happens when you go in, you start to suspect yourself of having
something that's not quite right.
So you go in often to your primary care physician and they start to look at you and if they
see the resting tremor or they see some challenges with your gait or your stability or your walking,
then they'll probably refer you to a neurologist who will make the clinical diagnosis.
One of the interesting breakthroughs that's happening right now is we're in the hunt for
good biomarkers.
And about a year ago there was a study that came out that said you could see alpha-synuclein
aggregation in spinal fluid.
So alpha-synuclein, Mark was talking earlier about what Parkinson's is within the basal
ganglia.
But essentially what happens is you get this aggregation of alpha-synuclein which kills
off your dopamine neurons.
And so if you can find that aggregation in spinal fluid early on, that means you could
be diagnosed much earlier and get on a treatment regimen earlier, start exercising anew and
all the things that you need to do to take care of yourself.
But more recently there's a study that's come out showing that you can find alpha-synuclein
aggregation in skin biopsies, a much less demanding way to get biomarkers than a spinal
tap for sure.
So there's a lot of progress being made on improving the diagnosis of Parkinson's disease
and essentially setting the clock backward a little bit or forward whatever the right
way to do it is so that you can get diagnosed earlier with more definitiveness.
Hey, John Laird, who's the CEO of the Parkinson's Foundation.
If people want to find more about what the foundation has available in terms of resources,
where would they go?
Yeah, the best place to go is to our website which is Parkinson.org.
I can tell you, Jim, we're pleased to report within the last week that we had 7 million
unique visits to our website this year which is a record for us.
That means a lot of people are going to our website multiple times to get the information
they need.
But we also have a helpline which is 800-4, the number 4, he has Parkinson's D disease
info, INFO, so that's 800-4-PD-INFO.
And so our helpline is staffed by medical professionals who are experts in Parkinson's
care and we field about 25,000 calls a year.
A lot of times people are just asking what is Parkinson's, where might I get treatment,
what are these signs or symptoms about, a lot of referrals.
But our people will be on the phone with people for maybe as short as a minute but as long
as an hour or so.
So that's another resource for people.
And if a military veteran calls in, John and says, hey, I was in the service, is that
something your folks are attuned to?
Absolutely.
And as we mentioned at the top of the call, there are 110,000 individuals in the United
States who are veterans who live with Parkinson's disease.
That's 10% of the overall population.
So we offer a lot of things.
We have a whole guide, Frequently Asked Questions Guide, which is specifically developed for
people with, for veterans living with Parkinson's disease.
We also offer a Veterans and PD webinar series.
So it covers all topics that are important to veterans around planning for the future,
environmental exposure, managing mental health issues.
And as I said, we have our website which says General Information and then our helpline
that can get much more specific.
And those people on our helpline, they speak to a lot of veterans and they're very good
at addressing veteran issues.
Well as we know, it's not just the patient, it's the whole family that has to address
these issues.
Mark, you're particularly lucky in your faith and in your family.
Your wife in particular, you want to talk a little bit about the importance of those
issues?
Absolutely.
They have three kids, a 22-year-old, a 20-year-old, and a 16-year-old, a wife of 23 years.
And I've been absolutely blessed by that.
They are my support network that helps me live well with Parkinson's.
A lot of times people, when they find out that I have Parkinson's, will say, I'm sorry.
And I'm like, nothing to be sorry for, right?
I'm living well with Parkinson's.
Getting the diagnosis for me was not a death sentence.
It was information.
It was information about what was going wrong with my body and how I could work with the
Parkinson's Foundation to learn to live the best quality of life that I can.
And also for my family to understand how they can support me better in living a quality
life.
Yeah, and one of the things I want to tie back to veterans and why, if you're a veteran
or a family member or friend, you want to think about this connection, if your Parkinson's
is connected to your military service, the VA has a lot of programs for caregivers as
well.
And I don't know if you've used any of those yet, Mark, or if you had to go ahead and talk
a little bit about the support that VA gives to its caregivers.
Yeah, so the caregivers themselves have classes where they meet together once a month.
My wife has been part of this.
Part of it is just a social time for spouses and partners, significant others, caregivers
in our life.
There's even children who are caregivers who will end up logging on and half time is
spent socializing, supporting one another.
And the other half of the time is getting information.
They'll have doctors speak, physical therapists, occupational therapists, speech therapists,
each giving information to caregivers to help them better understand what's happening
during the progression of the disease and how they can assist their loved one.
For veterans, the Parkinson's Foundation also has a specific spot on our website that you
can go to and get great information.
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
slash veterans, Parkinson.org slash veterans, V-E-T-E-R-A-N-F.
And there's an amazing amount of resources there to help the veteran community.
Well, I mentioned this too in setting up this interview with John Laird, CEO of Parkinson's
Foundation and Army and National Guard veteran, Mark Kilm, that I have some family involvement
here.
And actually, I'm kind of dedicating this interview to my uncle John Roy, who is an
Air Force veteran, because he was a caregiver for probably 30 years to my aunt Joanne, who
had Parkinson's and ultimately subcombed to it last year.
You don't die from Parkinson's, you die from all the other stuff that kind of goes along
with it.
And I think it's important that we get out and have these kind of discussions, and people
aren't either super afraid of the disease or think, as Mark you mentioned, it's not
a death sentence.
You just have to, I think, I like your language.
You have to learn to live well with the disease.
And I think that's the great spirit and the fighting spirit that I'd expect somebody from
the Army to give me.
Any final words here, Mark?
Don't be afraid to ask for support.
I have asked for and received support from my friends, family, medical team, and faith
community.
You don't have to do this alone.
You're not a one man Army.
John, any final words for our veteran radio listeners?
Yeah, well, just first to thank you, Jim, for putting a spotlight on veterans who are
living with Parkinson's disease.
And to thank Mark Kelm, who also serves as our chair of our Parkinson's Policy Advisory
Council and does an outstanding job on that.
He keeps us well advised on all the issues related to living with this disease.
We're really grateful for the opportunity.
And just to thank all the veterans who served and then all the veterans who, unfortunately,
have come down with this difficult disease.
We're here to help in any way we possibly can.
Well, I want to thank both of you for helping get this information out.
And again, we had to kind of adjust schedules.
And I really appreciate everybody being available.
Thank you.
Thank you, Jim.
Appreciate it.
And I want to thank everybody for listening to Veterans Radio today.
I am Jim Fawcone.
It's been a pleasure to be your host.
I'm a Veterans Disability Lawyer at Legal Help for Veterans.
And you can reach us at 800-693-4800 or legalhelpforveterans.com on the web.
You can follow Veterans Radio on Facebook and listen to its podcasts and internet radio
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And until next time, you are dismissed.
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And until next time, you are dismissed.