Episode Transcript
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Speaker 1 (00:00):
Hi am Selvia Moss, and this is Insight, a presentation
of iHeartMedia where we really do care about our local
communities and all our listeners who live here. You know,
I can remember as a little girl growing up seeing
some of my father's siblings who were much older than he, shaking,
appearing stiff, and sometimes having a difficult time speaking.
Speaker 2 (00:22):
We know what.
Speaker 1 (00:23):
In those days they called it the palsy, and all
I knew that as a little girl, it really scared me. Then,
in the late nineties, somebody who was considered America's darling,
Michael J.
Speaker 2 (00:34):
Fox YEP Alex P.
Speaker 1 (00:35):
Keaton, he announced that, at twenty nine years old, he
spent the last seven years suffering with the same symptoms
that my elderly aunts and uncles did, but somehow was
able to keep his condition out of the spotlight until
he felt finally felt ready to share it. So, you
know what, I thought him in and I thought my
aunts and uncles were in their sixties, seventies, some in
their eighties, and Mike was in his twenties, and they
(00:57):
had the same disease.
Speaker 2 (00:58):
What is going on here?
Speaker 1 (01:00):
So upon further research, I found out that every six minutes,
two hundred and forty people in this country are diagnosed
with Parkinson's disease. I also discovered that approximately one million
people in the United States are living with Parking disease,
and that number is expected to rise by one point
three million by twenty thirty and that's just a couple
(01:22):
of years away. What's truly notable to you, my listeners,
is that the incident's rate of Parkinson's are higher in
certain geographic regions. Central Pennsylvania is one of those regions.
With all this in mind, I've asked doctor Rebecca Gilbert,
the Chief Admission Officer for the American Parkinson's Disease Association,
(01:42):
to provide us with some insight about this stifling disease
for which right now there is no cure. Allow me
to tell you a little bit about this amazing and
dedicated doctor Gilbert. Well, first of all, she's had a
wealth of experience diagnosing and treating Parkinson's disease. In addition,
she has a strong background and the science that is
behind it, and a fundamental understanding of the challenges of
(02:05):
living with Parkinson's disease.
Speaker 2 (02:07):
Doctor Gilbert, I'll tell you what what a lady.
Speaker 1 (02:10):
She received her MD and her PhD and Cell Biology,
Biology and Genetics at Cornell University, then completed her neurology
residency at Columbia Presbyterian Medical Center. She's also been an
Associate Professor of Neurology at the Fresco Institute for Parkins's
and Movements Disorders at NYU Lango Medical Center. She's participated
(02:32):
in clinical trials and other research initiatives for Parkinson's disease,
and she still widely speaks about.
Speaker 2 (02:40):
The disease and sees patients.
Speaker 1 (02:42):
She's on the phone with me right now, boy, Doctor Gilbert,
honestly good.
Speaker 2 (02:46):
I'm so impressed.
Speaker 1 (02:47):
I'm so impressed because it's sort of like I said,
we didn't really couldn't put a name on it until
Michael Jay Fox came out with it, and you certainly
have a heck of a background to address the issue.
First of all, let's get right to it, Okay, in
your current role as a Chief Mission Officer for American
Parkinson's Disease, tell us what you do, what are your responsibilities?
Speaker 3 (03:12):
Oh?
Speaker 4 (03:12):
Thanks, First of all, thanks so much for having me.
Speaker 2 (03:14):
Oh it's my pleasure.
Speaker 4 (03:16):
Insights into this really complicated disease. As you mentioned, so
to start off, what is APDA that American Parkinson Disease Association.
So it's a it's a graph roots network which is
dedicated to fighting Parkinson's disease. And we're in all over
the country in different forms and chapters and information on
referral centers, and we're just providing patient services, educational programs
(03:39):
to elevate public awareness and to support research. And in
my role as Chief Mission Officer, I guide APDA and
what our mission should be and where we should give
our resources to really move forward the needle on these
various initiatives that we'd like to see move forward. In addition,
(04:01):
because of my scientific background, I oversee apda's research portfolio
and provide medical and clinical expertise to support our programming
and educational content.
Speaker 1 (04:11):
Okay, well, first of all, when you're diagnosed with something
something big deal like Parkinson's, first thing you want to
know is like, how is it going to affect my body?
How's it going to affect me physiologically? Is my body
going to break down? What happens with Parkinson's?
Speaker 4 (04:26):
Yeah, So, Parkinson's disease is a brain and nerve disorder
in which certain nerves in the brain degenerate and they
don't dive as long as other nerves do. And because
of this, there are plethoros symptoms that can affect people
in many different ways. We divide these effects of Parkinson's
(04:48):
disease into two main categories. We call them the motor
symptoms and the non motor symptoms. The motor symptoms are
familiar with, that's the tremor you mentioned, the bonus, we'll
be walking. It's something people can see and it can
really profound the effects of person's quality of life. However,
what we mentioned first and foremost is that the disease
is really a very subtle disease. Early on, it can
(05:10):
be very very slow moving. So if somebody receives the diagnosis,
it isn't the end of the world. It's really the
start of an exploration to figure out how to make
sure that your life is as good as it can be,
because I just want to say that yes. So in
terms of that, that's the motor piece of it. There's
also what we call the non motor symptoms. Non motor
(05:32):
symptoms can affect all sorts of different elements into how
we function. It can affect the gut, can make the
gut slow and cause constipation, It can cause fatigue, It
can cause problems sleeping, it can cause problems with mood.
And so when a person has Parkinson's disease, they really
need to assess sort of their entire well being and
(05:54):
try to tease out what pieces are associated with Parkinson's disease,
what pieces are not, and then try to improve quality
of life from all those angles. And so really thinking
about Parkinson's as a comprehensive disorder and addressing it that
way can really be the most impactful to making sure
your quality of life is as good as it can be.
Speaker 1 (06:14):
Well, you know, I don't know about other people, but
I whether it's my family, somebody close to me, even me,
when I suspect something, I am doing research constantly to
find it is how I have?
Speaker 2 (06:25):
How do I know?
Speaker 1 (06:26):
If I do suspect, I go to my family doctor,
but he can't treat me for it. I mean, you
would have to go to a neurologist. I guess he
would have to refer your She would have to refer
you to a neurologist.
Speaker 4 (06:36):
Right, That's often is what happens. But you know, as
you mentioned, there are a million people with Parkinson's living
in in this country. Aren't that as many neurologists as
we need around the country, And so there are family
doctors who feel comfortable diagnosing and treating Parkinson's disease, and
so I would not want to to minimize that. If
(06:58):
that's the you go to, that could be, yeah, but
certainly a neurologist would have additional expertise to try to
make the treatment more refined and maybe have different insights
than a family doctor. So I would, if possible, recommend
(07:19):
that your family doctor refer you to a neurologist. But
I mention in addition, there are neurologists who have specific
training Parkinson's disease, and these are called movement disorders neurologists,
and I receive that kind of training, and there are
neurologists around the country that have that kind of training.
There's certainly lots of disorder neurologists in Pennsylvania as well,
(07:41):
And so if you are lucky enough to be able
to be referred to one of the A specialists, those
are the specialists that really have the most insight into
the subtleties of Parkinson's disease, all the different motor and
non motor symptoms, things like clinical trials and things like
new medications, et cetera. So that would be sort of
the ideal is to be treated by a movement disorder specialist.
Speaker 1 (08:04):
Okay, so you go to your doing your doctor, and
maybe he would refer you to a neurologist. But if
the neurogos sees the motor skills, the.
Speaker 2 (08:15):
The uh, what did you do?
Speaker 1 (08:18):
Call it the motor motor Yeah, suspects. What kind of
tests did they do to make sure you have that
or no or don't have it?
Speaker 4 (08:25):
That's a great question. And so for the longest time,
Parkinson's disease was a clinical diagnosis, which means you went
to your neueralogist. Your neurologists asked you to do specific
things with your hands and your feet and asked you
to walk and observed you. And Parkinson's disease kind of
have really very very specific symptoms. Motor symptoms could have
(08:47):
what we call a rest tremor, which is a tremor
that happens when your arms are resting in your lap
and you're not doing anything with your arms. Those are
really symptoms that you really only see with Parkinson's disease.
And so neurologists feel very comfortable diagnosing parkinson cities based
on clinical exam alone, and that's an important piece take home.
(09:09):
And so you may go to your neurologists, and your
neurologists ask you to do certain things with your hands
and your legs, and that's it and diagnoses you pretty
much guaranteed with parkinson cities. And that happens to many people,
and that's absolutely a reasonable approach. There's some people with
subtler signs and that that maybe they they're going pretty
early to their doctrine, they don't have really the full
(09:32):
blown motor picture yet, or maybe day have some other
sort of features of their exam that aren't completely clear.
Right now, we have pretty brand new in the last
couple of years, we have some commercially available tests that
can be done to confirm a diagnosis of Parkinson's cities. Yeah,
(09:54):
which is kind of new. There's a biopsy test that's available.
There's a test on cerebral final fluid which requires a
lumbar puncture. Those two tests are available and probably would
not be ordered by a family physician, may not even
be ordered by a neurologists, but certain movement disorder physicians
may feel comfortable ordering those more specific tests. There's a
(10:17):
lot of controversy around these two. Controversy is a strong word,
but a lot of uncertainty around these tests exactly when
they should be used and what their results mean and
not some people who've received these tests aren't quite clear
what the results are. So there's this is still a
work in progress, but definitely we're moving in that direction
of having tests available for Parkinson's, which is really new
(10:39):
and exciting. There's also an imaging test called a dat
scan dat sca N which has been available for many years,
probably about a decade now, and it is an imaging
test that can look at the dopamine system. We'll get
into what dopamine is, which can help us understand whether
a person is Parkinson's. So there are tests that are
(10:59):
out there. Isn't just what we call it clinical diagnosis anymore.
So it's a very exciting time for moving the field
forward of Parkinson's disease.
Speaker 1 (11:08):
I'm sure you con cleared this question up for me.
Do most people have Parkinson's that do have it, do
they end up getting dementia or does is dementia.
Speaker 2 (11:17):
Just complicate Parkinson's if they get it?
Speaker 4 (11:21):
That's a great question. We could probably spend an hour
talking about this. So cognitive problems in Parkinson's is a
non motor symptom of Parkinson's. You know how I mentioned earlier,
there are the motor symptoms, right, non motor symptoms, So
having problems with cognition can definitely be a non motor
symptom of Parkinson's, and it is a relatively common one.
(11:42):
Not every one of the Parkinson's gets this problem, but
it isn't uncommon to get the problem, and so it
is part and parcel of Parkinson's disease. And what I
say is the words dementia sort of is the d word.
You know, it carries a lot of weight to it,
but it's it's it's really a spectrum, you know, from
(12:03):
the way it feels that their their cognition was early
on in their life to to to later on in life.
It could be it could be subtle, it could be
you know, I used to be able to plan Thanksgiving
dinner without writing anything down, but now you know, it's
a little bit it's a little harder for me.
Speaker 3 (12:22):
Oh, I'm multiple as well as I used to, or
you know, I'm not I'm not as as clear about
uh doing multiple things at once or or getting places
with a mask.
Speaker 4 (12:36):
My map skills aren't as good and these and these
uh cognitive issues can be subtle, but it doesn't mean
that a person is is sort of out for the
counts and can participate in life. So so it's a
matter of sort of identifying what the cognitive problems are
and and trying to come up with solutions so that
your quality of life can can still be what you
want it to be. Having said that, there are people
(12:58):
who then move to more advanced ages of cognitive problems,
but that isn't everyone. So where you will on this
spectrum is really unknown. But I don't want to leave
people thinking, oh, you know, you get Parkinson's, then your
cognician is busted. And yeah, there really is a spectrum
of of of issues that that may happen or may not.
Speaker 2 (13:19):
You talked about the symptoms.
Speaker 1 (13:21):
Would they be the same for someone who's older as
they would breath for something maybe in their twenties.
Speaker 3 (13:27):
Oh yeah, so that's.
Speaker 4 (13:28):
A great question too. So as you mentioned, you know
that Michael J.
Speaker 2 (13:32):
Fox, Yes, but that's where it comes from, Thank God
for him.
Speaker 4 (13:35):
Huh, absolutely what what a absolutely wonderful, wonderful man, where
we're all indebted to him for really bringing this disease
to the forefront and really fighting it with such grace
for so many years in the public eye. And that's
it's really really an amazing man. And uh, but he
got it so early and and and so he really
opens up the discussion about what we call young onset Parkinson's,
(13:58):
which is parkinson before the age of fifty, so people
in their thirties and forties and sometimes in their twenties
as well, which is quite unusual. And this category of
people who get Parkinson's can be a little bit different.
It really is the same disease, but it can be
manifest a little bit different. In the younger population. It
(14:18):
tends to be slower progression if you get it, tends
to have fewer cognitive issues if you get it younger,
tends to have more sit more side effects from the medication.
So we can get into that a little bit a
little bit more if if you'd like, and can lead
to different treatments. Sometimes people with younger aunts that tend
(14:40):
to get what we call deep brain stimulation, which is
a surgery for Parkinson's.
Speaker 2 (14:45):
I'm we're kind to ask you about that one.
Speaker 4 (14:47):
Yeah, we can talk about that certainly. And then the
psychosocial piece of the young onset is that people who
are younger are more engaged with being a caregiver to others.
They may be a caregiver to their parents or to
their children, which is something that people who are older
don't have to deal with. There's all too employment issues.
People who get it later maybe retired. People who get
(15:08):
it earlier are still in the workforce. So there's many
other psychosocial issues that need to be grappled with if
a person is younger, so it comes manifest quite differently.
And people with young handsets Parkinson's do need a community
of their own so that they pash.
Speaker 2 (15:23):
Out these issues exactly. I totally understand that.
Speaker 1 (15:26):
You know, at the START program, I mentioned that the
incident's rates of Parkinson's are higher in certain areas, and
we in Central Pennsylvania live in those areas.
Speaker 2 (15:35):
How come why.
Speaker 4 (15:37):
It's a great question, and we don't have all the answers.
Just like any complex disorder, Parkinson's, pauses of Parkinson's disease
are going to be a combination of the environment or
environmental risk factors and your genetics, some of these two
are going to push certain people to getting any particular illness,
(15:58):
including Parkinson's, And so looking at the environmental piece has
been very eye opening in the last number of years
and finding out whether there are specific environmental toxins that
are playing a role here. And one of the taxins
that rise up in the media, for example of paraquat,
(16:19):
which is a a nerbicide that is used in farming.
Speaker 1 (16:25):
And and you know what, agriculture is our number one
industry in Pennsylvania.
Speaker 4 (16:32):
That's right, That's right, So that definitely could be a factor.
You know, I don't want to make any hard and
fact rules, but certainly some exposure to pesticide may be
part of part of the equation. And that's a hot,
hot topic of research about how environment when player Ronald Parkinson's,
(16:55):
how genetics plays a role, and how they may interact.
Environment may interact with your genes to push forward the
risk of.
Speaker 2 (17:01):
Parkins well genetics, so is it hereditary?
Speaker 4 (17:06):
So this question has been looked at from all sorts
of angles, and there is a large study going on
right now where people with Parkinson's disease their genetics has
been looked at on the large scale thousands of people
and out that approximately fifteen percent of people who have
Parkinson's disease also have a known genetic mutation that contributes
(17:30):
to their Parkinson's risk. So fifteen percent is not a
large number, so why isn't it larger. One reason is
maybe we don't know all the genetic mutations to test for,
so that's a possibility. But more likely is that the
environmental role is playing a large role as well. And
so we have fifteen percent of people with some mutation
(17:53):
and the rest may be driven more by environment than genetics,
or their geneticist is really really low and you need
that combination of the environment and the genes to enhance
your risk of parkinson So all this to say, we
don't have all the answers, but genetics plays a role
(18:13):
and environment plays a role.
Speaker 1 (18:14):
Okay, you had talked about creamine. I remember seeing a
documentary with Michael J. Fox and he was saying that
for years he relied on was it dopamine? Something? He
put it because is it true that when you're neurons
or whatever? It forgive me for my ignorance, but when
your brain does not have as much dopamine as it should,
(18:37):
you have to replace it.
Speaker 2 (18:39):
Right.
Speaker 4 (18:40):
Yeah, that's that's the basic principle.
Speaker 1 (18:42):
Okay, so he didn't have enough, and so he got
through it for a number of years by popping dopamine.
Speaker 4 (18:49):
Right, That is definitely one way of cre That's what
he said.
Speaker 2 (18:53):
Yeah, well what is dopamine?
Speaker 4 (18:57):
What is dopamine exactly? So the basicthology in Parkinson's disease
is that, as I mentioned, the generation of specific nerves
and the brain, and one of the nerves which we
know one of the types of ner nerves which we
know is really important in Parkinson's disease, are nerves that
communicate with other nerves using the chemical dopamine, and so
(19:19):
down one of the nerves and it wants to talk
to the next nerve, and the way it talks is
it releases dopamine into an area between the nerves and
then the nerve after the first nerve picks up the
signal and then is able to communicate. But if the
dopamine is not there, then the communication between the nerves
breaks down and the isn't working and you can get
(19:40):
things on a stiffness and tremor, et cetera. And so
by replacing dopamine, you can restore this communication. So how
do you replace dopamine? Do you actually say dopamine itself?
Dopamine actually does not cross the blood brain barrier. Blood
brain barriers is really tight junction that doesn't allow a
lot to cross in the brain, which is just a
(20:01):
good thing for other reasons. To find a drug that
can cross the blood brain barrier and then turn into
dopamine in the brain. And that's a chemical called lev
a dopa, and so that is something that people may
have heard of, so people don't ask dopamine. May take
something called leave a dopa, which is a dopamine precursor.
Speaker 2 (20:18):
Okay, Okay.
Speaker 1 (20:19):
You also just mentioned deep brain stimulation. How does that work?
Is that like, is it like a shock treatment to
the brain.
Speaker 4 (20:28):
It actually is not a shock treatment. What it is
is implantation of a wire, okay, which basically and then
the the wire gets tunneled out of the brain under
the skins. You can't see it and isn't exposed. It's
underneath the skin, and then it's attached to a battery
pack in the chest, very similar to a paste maker
(20:49):
a cardiac paste, and it sends electrical signals deep into
the brain, which basically has the same function as restoring
that circuitry that I talked about that's broken down when
you don't have dopamine, since instead of dopamine to kind
of restart the circuitry, you give electricity to restart the circuitry, right,
(21:10):
And it can work very well for specific situations. It
can work very well for people who have a lot
of tremor. It can will work very well for people
who are very responsive to the dopamine. But the dopamine
is starting to cause some problems, So what do I
mean by that? So after a number of years on dopamine,
(21:32):
and the disease has progressed to a certain degree, and
there's enough nerves that have died, and the circuitry isn't
really connecting well because these nerves have died. What tends
to happen when you take the dopamine is the dopamine
doesn't work for very long and can be very erratic.
It may work, it may not work. You need to
(21:52):
take the medican exactly on time, or else you have
symptoms again. And you can also get something called dyskinesias,
which are extra most moments, which you may have seen
Michael J. Fox do as well. So this whole situation
where you had sort of a erratic response to the medication,
it doesn't work for very long you have these extra movements.
That situation is called motor fluctuation. Okay, when you get
(22:16):
situation with the medications, that's when the surgery can be
particularly helpful. And so it can be quite complex, but
there are options. Is really the bottom line. So if
you are suffering from kind of these issues, certainly speak
with your doctor about a potential surgery and may be
for you.
Speaker 2 (22:32):
Well, you know, when people see Michael J.
Speaker 1 (22:34):
Fox and he's a young guy and this has been
around forever and he brought it to the to the spotlight,
they freak out, Oh my god, I'm gonna it looks
like something that you would eventually die from. But you don't,
do you we die from something else you do.
Speaker 4 (22:51):
It is a slowly progressive disorder and is not a
fatal disorder. Okay, So and other as you ate, you
can get other other diseases as well. What is true though,
is that the Parkinson's disease can make a person sort
of more frail, more prone to fall, more unable to
(23:13):
handle other conditions. And so the bottom line or the
most important thing is when you have Parkinson's disease is
to not become frail if you can help it. And
how do you do that. That's and that's why our
mantras always exercise, and we need to get that in
before this this podcast is over. Exercise is super important
(23:35):
for somebody with Parkinson's disease to maintain that state of fitness,
to maintain that muscle bolt, to maintain that ability to
move as much as you can. I mean, certainly, exercise
can only get you so far. It can't cure anything,
but it can certainly get you in a position where
you can take on Parkinson's disease manage exactly.
Speaker 2 (23:58):
Okay, okay, well you know what it's like. I mean, well,
not anymore.
Speaker 1 (24:03):
My parents have passed away, but I can remember Ken
Crawl years ago where women especially were soundished between taking
care of their children, their spouse and their aging parents.
It's really really stressful. But I understand that the Parkins'
Disease Association, American Parkinson's Disease Association has support for those people.
Speaker 2 (24:25):
Talk to us about that because that's so.
Speaker 4 (24:27):
Important, so important absolutely. I mean, we always talk about
the person with Parkinson's and we don't talk about the
care partner.
Speaker 2 (24:34):
And that's right.
Speaker 4 (24:36):
Taking that person to doctors' visits, being with that person
all the time to maximize their quality of life. It's
so important. And APVA is dedicated to helping not only
the person with Parkinson's but the entire family.
Speaker 2 (24:49):
And oh, that's great.
Speaker 4 (24:51):
And we actually have a new program which we're calling
the Care Partner Connection, and it's an eight week program
that offers the opportunity to connect with other care partners
for emotion mole support and for sharing. And the group
also provides education about planning for the future and practical resources.
And what's super exciting is that the program is now
being piloted in various locations and one of those locations
(25:12):
is Harrisburg, Pennsylvania. Kid yeah, great German. So if you
are interested in participating in this pilot, I can give
you our one eight hundred number two two three two
seven three two, and we'll be able to give you
as soon as as this program is set. In terms
of the date, we'll be able to tell you what
(25:34):
that data is. So I just wanted to make sure
that was that we said that. And so we currently
have a support group running in Philadelphia. It just start
on January eighth, but it's taking place every other Wednesday
at the Wesley Enhanced Living as you called, and the
number is two one five seven oh nine seven one
seven four. You can call data and see whether this
(25:57):
is something for you and that support group for people
with Parkinson's and care partners as well. So fun it
is done.
Speaker 1 (26:04):
As we're quickly running out of the time, I got
to ask you, do you have any hope as far
as research for Parkinson's.
Speaker 4 (26:11):
Absolutely, there are multiple, I would say even hundreds of
clinical trials that are ongoing right now. Some of those
trials are in Phase three, which is sort of the
last phase of all sorts of new opportunities and treatments
for Parkinson's to see. So there's a lot on the table,
there's a lot going, a lot going on this that's
happening right now, and that might lead to treatment soon.
(26:34):
So absolutely there's a lot of hope.
Speaker 1 (26:36):
I want to give our listeners your web addresses ap
DA parkinson dot org. You can always call them at
one to eight hundred two two three two seven three
to two. Doctor Giller, my goodness, thank you so much
for your time and for all the ways you've educated
to stay about Parkinson's and for all the continued efforts
for finding a cure, and for my listeners, remember what
(26:58):
doctor Gilbert says, p least pass all the very important
information we learned about Parkinson's disease onto everybody you know.
Speaker 2 (27:05):
And remember you can.
Speaker 1 (27:06):
Catch Insider on our ten iheartstations and on your favorite podcast.
I'm Sylvia Mosas. This has been insight Thanks so much
for listening.
Speaker 2 (27:13):
See you next week.
Speaker 1 (27:29):
Every six minutes, two hundred and forty people in this
country are diagnosed with Parkinson's disease. Right now, there is
no cure, but there are ways to manage it. For
more information, contact the American Parkinson's Disease Association at one
eight hundred two two three two seven three two or
visit ap DA parkinson dot org.
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We have finally got one right.
Speaker 1 (29:06):
Eduscate yourself about Parkin's disease by going to ap DA
Parkinson dot org. Are calling one eight hundred two two
three seven two seven three to two, Hi, this is
Iheartpublic affairs director and host of Insights, Sylvia Moss. Each
week on Insight, we address and try to provide the
best local resources for the issues that you tell me
(29:27):
are the most important to you, the ones that have
the biggest impact on your everyday lives. Insights also a
place where we can let you know about exciting community
events and introduce you to many of the incredible people
who work hard every single day just to make all
of our lives better. If you're not able to listen
to Insight when it airs on this station each week,
then catch it on your favorite podcast at Thank You
(29:47):
for listening.
Speaker 2 (29:52):
Don't forget America's veterans.
Speaker 4 (29:54):
Log onto thank you Veterans dot org and write a
thank you card to a veteran and for their service
to our country.
Speaker 2 (30:02):
A public service of Paralyzed Veterans of America