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June 30, 2025 26 mins
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Episode Transcript

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Speaker 1 (00:10):
Welcome to Georgia Focus. I'm John Clark on the Georgia
News Network. The American Parkinson's Disease Association is a nationwide
grassroots network dedicated to fighting Parkinson's disease and works titmelesly
to help the more than one million people affected by
the disease in the United States. It helps them to
live their lives to the fullest and the face of
this dramatic neurological disorder. Today we're talking about Parkinson's with

(00:32):
Amy Johnson from the American Parkinson's Disease Association in Georgia.
First of all, explain what Parkinson's disease is.

Speaker 2 (00:40):
Well, Parkinson's disease. It's a type of neurologic movement disorder
that affects the brain and causes difficulty with moving and
other motor symptoms. The most common motor symptom is a tremor.
So if you see like your hands shaking, or you

(01:02):
have stiffness or slowness with movement, which is also called blackanasia, right,
that's that is Parkinson's That that could be a symptom
of Parkinson's disease. There's also non motor symptoms that could
could include sleep problems, anxiety, depression, fatigue, and other things

(01:25):
that would disrupt your daily activities.

Speaker 1 (01:27):
Sometimes it's it's confused with Alzheimer's. So what do they
do in that case?

Speaker 2 (01:32):
You know, as Alzheimer's is more of a where you're
losing your memory and your it's it affects a different
part of your brain. With Parkinson's, you can eventually have dementia,
but it's it's you can still your your your cognitive
your cognitive impairment is nothing like it's not as bad

(01:56):
as it is with Alzheimer's. It gradually gets a tiny
bit worse, but it's not like Alzheimer's. It can get worse,
I should say.

Speaker 1 (02:03):
Parkinson's can get worse. Yes, okay, So because is it
first does it always get worse? Like if you see
it they've got slight Parkinson's, Is it going to eventually
get worse?

Speaker 2 (02:15):
It does? It does, And it's like Alzheimer's where it
depends on the person. It depends on lots of different things.
You can you know, we have known people to live
thirty years with Parkinson's, forty years with Parkinson's, and so
it's you know, it's it just depends on the person.

Speaker 1 (02:35):
Well, we see Michael J. Fox, he lives yes, yeah.

Speaker 2 (02:38):
Yes, yes, yes, he's lived with it for I had
no idea thirty forty years like that.

Speaker 1 (02:45):
Yeah, yeah, and still in with it and making appearances
too on behalf and using it to just yell Parkinson's. Yeah, exactly.
If you if you, if you know something, what do
you not to tell? You know, it's a tremor, you know,
then you had any explanation for anything like that, you

(03:06):
should get it checked out.

Speaker 2 (03:07):
Right, absolutely, get it checked out. Go go see your
doctor and see, you know what it could be. There
are several there's a couple of different ways to test
for Parkinson's. You'd have to go see a neurologists to
do to do that, but you could start with your
with your medical doctor to see if this is something

(03:29):
that it could be, and then they would send you
to a neurologist or or moving to the order specialist.

Speaker 1 (03:35):
And what what would they do to you in that case?
What type of test would you run?

Speaker 2 (03:40):
It could be It could be just a a visual
you know, just watching your your gate, watching your your tremors,
watching you know, your different So it could just be
a visual test. You can you know there's there's all
sorts of new things come out. They're working on a

(04:02):
skin test you can do you know, adat scan, so
it could be you know, several different things there were
actually research right now they're working on other ways to
be less invasive. When it comes to diagnosing park.

Speaker 1 (04:18):
To tiplified, I guess then, right, yes, yeah, can you
this is weird? But can you die from Parkinson's?

Speaker 2 (04:25):
You die with Parkinson's. You don't die from Parkinson's. You
might die from complications due to Parkinson's, but you don't
die of Parkinson's.

Speaker 1 (04:35):
Okay, what are you doing now? Now? I know you
had some some the essentials which we go out and
you talk to people about this in Georgia and you've
had those recently. What are you doing that class? What
are you doing that class or that that series?

Speaker 2 (04:49):
So we have several different education programs. We also have
support groups throughout Georgia. So for like the PD, Parkinson's
is these essentials, it's just really learning Parkinson's is how
to get it diagnosed. You know, what symptoms to look for,
what might be your treatment and medication options, those type
of things. Actually, on August twenty third, we're going to

(05:13):
have our research conference at Emory Brain Health Center, and
we're going to have some featured researchers talking about new
researchers out there. So we do things like that. We
actually have other education coming up. We also do a
Connecting through our program which helps with your fine motor skills.

(05:36):
And we also we work with Morehouse Grady Hospital. There
are information and referral center and they offer resources and
education to their patients through our services.

Speaker 1 (05:50):
Are people can you Are they living with Parkinson's better now?
I mean is there medication available?

Speaker 2 (05:56):
There are medications available to deal with some of the symptoms.
Will say the most the most important thing that if
you're diagnosed with Parkinson's is you need to research the
best ways to exercise, which are there are several different
things like boxing. It's an eye it's an eye hand

(06:16):
you know, contact, so it's one of the better things
that you can do. There is research that shows that
actually shows that doing certain exercises with if you have
Parkinson's can actually make your symptoms better. You can move better,
you can do things better, and so that is probably

(06:40):
the most important medication.

Speaker 1 (06:42):
If you have Parkinson's DIC did you show boxing boxing? Yes,
you wouldn't think that boxing would help Parkinson's, but well it.

Speaker 2 (06:50):
Does, it does, and so it's it's the eye hand
content the eye the eye hands yep is one of
the one of the best ways to to help with
your pocket.

Speaker 1 (07:07):
With that. You know, boxing for example, it hits your
head a lot. Does that just things like hitting your
head like repeatedly?

Speaker 2 (07:15):
Cause well that's well, actually, let me back up, so
that it's non contact boxing.

Speaker 1 (07:18):
Okay, okay, you would be.

Speaker 2 (07:20):
Boxing you you wouldn't be boxing somebody.

Speaker 1 (07:22):
You might just be hitting hitting. Yes, it does. Contact
increased Parkingston's, the the the ability increase your chance of
getting Parkinson's.

Speaker 2 (07:33):
It could. There's a lot of research out there trying
to figure those things out.

Speaker 1 (07:37):
So a lot of things that aren't known about parkinson
still then.

Speaker 2 (07:41):
They yes, there is, there's so much research going on
to figure out, you know, how people are getting Parkinson's.
It can be hereditary, but there is tons of research
going on to figure out exactly how people are are
getting this disease.

Speaker 1 (07:58):
I've heard, I've just heard. I can't remember whod is.
I won't talk to a name on the air, but
I remember hearing recently that somebody that I know had
just had Parkinson's, just got diagnosed with parkinson and then
I I also somebody else I know, and he was
in his eighties. He's just passed away. And he did
a lot of a lot of work to promote Parkinson's

(08:20):
through the micro Ja Fox Foundation and to help out
and promoting it with promoting it, letting people notice out there,
and he just passed away. And I'm sorry to hear
about that that too. What types of things that you
do to put it out there by Parkinson's to help people,
like do you have your walks of walks or anything
like that.

Speaker 2 (08:39):
Actually just had our Optimism Walk in April, and so
we have our walk every year and then we also
put on a golf tournament. You know, April is actually
Parkinson's Awareness Months, so we do a lot of activities
during that month to raise awareness about Parkinson's and about
the resources that American Parkinson's Disease Association provides, whether it's

(09:04):
through the chapter, the our website has an enormous amount
of resources, online education, online exercise programs. They have anything
you need to know about Parkinsons disease, you can find
that on our website.

Speaker 1 (09:23):
Do they know what causes it Parkinson's.

Speaker 2 (09:25):
They don't. They are trying to figure this out through research.
There's research around different you know, chemicals, whether it's through
agricultural chemicals. There's also research around you know, the being
being hereditary or it could be several different factors. So

(09:48):
they're still trying to work work that.

Speaker 1 (09:50):
Out, still working that out. It's so these these diseases.
Alzheimer's is one too that that we know of, and
Parkinson's is so it's so many questions still that they
don't have the answers to and that can't seem to
get the answers or not fast enough anyway, you know,
for us.

Speaker 2 (10:06):
For us, yeah, I would definitely say with Parkinson's, I
think that there needs to be more awareness around this disease.
I think there needs to be more obviously more funding
for research because as you know, John, the the you know,
the world, we're getting older, oh, the baby boomers ten
thousand a day, and so one of the biggest risks

(10:27):
of Parkinson's is being sixty five or older. And so
when you have this enormous amount of people that are
turning sixty five at a rate of ten thousand a day,
there's going to be more people with Parkinson's. There's going
to be more people diagnosed with Parkinson's, right, so you know,
we obviously need more funding, whether it's through our organization,

(10:49):
which one of the things that we do actually fund research.
And one of the amazing things that American Parkinson's Disease
Association does is it funds research that is that is
new and up and mean. So we are more or
less a sort of a seed money to get a
research something that that our medical advisory team thinks might this,

(11:10):
actually might do this, might do something, this might go somewhere,
and so we fund that research and then if it's working,
you know, if it gets past a certain a certain
phase and it's it's working, then then they might get
the research funding from the government or through Michael J.
Fox right, And so we are that that beginning money,

(11:32):
research money to get some of these major breakthroughs that
are happening started.

Speaker 1 (11:38):
Yeah, yeah, you got it. Takes it. That's that's the
thing about all these diseases. Takes money to do it.

Speaker 2 (11:43):
You know, it just takes money to do it.

Speaker 1 (11:44):
Really does it? Really does? Do you have any any
studies where people can get involved that may have Parkinson's
they can get involved. The people that don't that that
can get involved.

Speaker 2 (11:53):
We we do have research studies that are going on.
I think if you are here in Georgia and you
do have Parkinson's, I think one of the best places
to start with is probably a Emory. Yeah, they have
a Parkinson's Disease Research Center, which we are one of
the funders for. Is to definitely check with Emory University.

(12:16):
There Emory Brain Health Center, and they have lots of
different research projects going on.

Speaker 1 (12:21):
And to that I know Emory, I know it well
that it's very, very very involved in doing this. And
now the hospitals are too. But are there some hospitals
out in the hinterlands of Georgia out in other parts
of Georgia.

Speaker 2 (12:31):
Augustine University also has a research program for Parkinson's As
far as as far as that, I think that's the
only two that I know that we know of.

Speaker 1 (12:40):
Yeah, you should go to Augusta or or Emory. Yeah.
How many people have Parkinson's Nation.

Speaker 2 (12:46):
Well, there's over a million in the country and that
number is probably very low. That comes from I think
three years ago they're close to twenty eight twenty nine
thousand in Georgia. But again that numbers probably low because
that we have not done any any new research on
facts and figures for Parkinson's disease. It does affect men

(13:10):
more than it does women.

Speaker 1 (13:11):
Really well, I imagine too, you get people like that,
they aren't diagnosiet they just haven't gone to the doctor
in years and years. You have people like that.

Speaker 2 (13:20):
Correct, Yeah, So it's it's it's better to be it's
actually much much better to be diagnosed with Parkinson's disease early.
There's new drugs coming out all the time. You know.
There is also a procedure that it's a it's called
DBS and it's deep brain simulation where they actually put

(13:41):
something inside your brain that helps you with certain symptoms
of Parkinson's disease.

Speaker 1 (13:46):
Really, oh man, are there doctors there doctors specialized in
Partington's too.

Speaker 2 (13:50):
There are they're called movement they're called movement disorder specialists.
They do specialize in Parkinson's disease. And so there are
several here in the straw area, through Emery Emory Brady
Health Center and then also through the land of Neuroscience
Institute and some other well Star some other some other

(14:11):
hospitals have and you know Morehouse Grady they have they
have one, so they're throughout the metro area and then
there's a few, only a few with with the state
of Georgia.

Speaker 1 (14:25):
Yes, so you should see your primary care physician first
and let them.

Speaker 2 (14:29):
Refer you to somebody to somebody.

Speaker 1 (14:32):
Yes, yes, so if you're if you're out now wherever
in Georgia, go see your doctor first and they can
they can find that out for you much.

Speaker 2 (14:40):
They can probably find that out for you.

Speaker 1 (14:41):
Yes, you get in much quicker than trying to do
it all your own, for sure.

Speaker 2 (14:45):
Well, one of the biggest problems is there is a
wait list. I was definitely to see Nelidis are a
moving disorders specialists. So the center you get yourself diagnosed,
the better.

Speaker 1 (14:55):
Yeah. The neurologists. We seem to have a shortage of
neurologists because there's a shortage list of all shortages for
them to see them. It really is. You have to
make appointments sometimes a year in advance, so it takes
a while. It takes a while to see There.

Speaker 2 (15:09):
Is a shortage for sure, and definitely shortage you know
in rural Georgia. So it's it's it's very unfortunate.

Speaker 1 (15:16):
Yeah, because I guess Parkinson's it doesn't It doesn't care
who it affects. But it doesn't care where they are either, that's.

Speaker 2 (15:23):
For sure, doesn't care where they are either.

Speaker 1 (15:25):
Are there people out there in Georgia now that may
have it?

Speaker 3 (15:29):
Oh?

Speaker 2 (15:29):
Absolutely, I don't know that they have it. I don't
realize what it is. Absolutely absolutely. This is why you know,
with American Parkinson's Disease Association, is why we're trying to
raise a much much more awareness around the disease itself.
And one of the things that's very similar to Alzheimer's
is that once you're diagnosed with Parkinson's, you know, they say,

(15:51):
come back and see us in six months, and you're
kind of luck with I don't know what to do yet.
And so the American Parkinson's Disase Association once to be
part of that team, wants to be part of your
regiment where you've come to us, and we provide you
with education, we provide you with support groups that are
near you, we provide you with other resources where you

(16:13):
can find the boxing class near you or where you
can find other things. And so we want to be
part of that team that helps you through the journey.
Of Parkinson's.

Speaker 1 (16:24):
So what do they do in that case? How should
they contact you? Guys?

Speaker 2 (16:27):
The best way to contact us is through a website
or you can call us at four O four three
two five two O two oh. And the website is
a PDA Parkinson dot org. And then if you're looking
for our chapter, it's slash g.

Speaker 1 (16:42):
A okay, because that's for Georgia. We want we want
you to get in on Georgia right right away. Yes, yes,
what are some of the other things that you have
coming up that you're doing that people can get involved with?

Speaker 2 (16:53):
So we you know, what are the other things that
we do that are that's we call them our signature events.
We have perms that are for people who are newly diagnosed.
So one of those programs is our Press program apda's
Parkinson's Roadmap for Education and Support Services and it's an

(17:14):
eight week class. It's every I think it's every two weeks,
and we have one starting on August twelfth, and it's
virtual so you can log on zoom. It's also available
for your care partners, so they are also in the
understanding of you know what to do next. So it's
conducted in a support group format. It will help you

(17:34):
feel empowered. And it's free.

Speaker 1 (17:38):
Free. That's that's the best thing.

Speaker 2 (17:41):
Everything we do, Everything we do is free.

Speaker 1 (17:43):
Okay, everything is free. And now where can people donate?
If they have Parkinson's and they want to donate money
to you, where can they go donate?

Speaker 2 (17:50):
They can go to our website to APDA parkinson dot org,
slash Georgia and just click on the donate button.

Speaker 1 (17:57):
Okay, you could do it that for anything. Any information
you volunteer, I bet you use volunteers all the time. Right.

Speaker 2 (18:03):
We do have volunteers. We have our fundraising event volunteers,
whether it's through their Optimism walk or through our golf tournament.
We also have volunteers that help us deliver mission programs,
whether it's registration for our conference or through our other
education courses. So we are always looking for for volunteers.

(18:28):
We have a board of directors that we work closely
with and they're all volunteers.

Speaker 1 (18:34):
When is your golf tournament? Talk about that.

Speaker 2 (18:35):
The golf tournament was actually on June the second.

Speaker 1 (18:39):
Okay, we just missed.

Speaker 2 (18:39):
We just had it. We just had it Dounwoodie Country Clubs.

Speaker 1 (18:42):
Oh was it a successive?

Speaker 2 (18:44):
It was a huge success. It was a huge success.

Speaker 1 (18:47):
We will have it again next year, though, right, we
will have it again.

Speaker 2 (18:50):
We usually we typically have it in June, the first
usually the first Monday in June, and we have it
at Dunwoody Country Club.

Speaker 1 (18:57):
It's always at don Winny Country Club. And you can
go ahead, can you. I mean, it's not set up
to register yet. We should mark your calendar. Mark that
down in your calendar.

Speaker 2 (19:04):
Yeah, yeah, just first the first Monday, engine is when
we typically have it.

Speaker 1 (19:07):
Because that's that's the way for the people to give
money right away.

Speaker 2 (19:11):
Absolutely, absolutely, and it's a fun way to do so.

Speaker 1 (19:14):
Yeah, And I'm sure you're looking for sponsors for that
already too, right.

Speaker 2 (19:17):
We're always always have yes sponsors. We we have so many,
we have so many wonderful corporations that support us. But
we're always looking for other corporations that want to get involved.
And it's and it's a two way street really because
you know, obviously we need the funding to support a PDA,

(19:38):
but you know, a lot of times these corporations have
families or have have you know, people that work for
the companies that are that are affected by Parkinson's, whether
it's themselves or whether it's a family member and they
may not know a lot about Parkinson's, and so we
do offer up, you know, a partnership where we can
provide your staff with Parkinson's education. So, yes, that is

(20:03):
something that we we love to do. We help love
to help companies and their and their staff to understand Parkinson's.

Speaker 1 (20:10):
Because you know, like you said earlier, when you see
that trimmor go go get checked out, get checked out.

Speaker 2 (20:16):
You see it always be yes, because it may not
be part right, it may be something completely something different, right,
but you want to make sure that you know what
is actually going on.

Speaker 1 (20:25):
Right and get on medication, get get help, get help.
You've got to get help, you get it. Yeah, that's
what's that's what's so key about it. As they're just
people out there that that don't know it. So I
appreciate you telling them that.

Speaker 2 (20:38):
If you if you feel you know, definitely, if you
are feeling or you you see someone or if it's
your if it is yourself that you feel like you
may have send ups to Parkinson's. I think that the
best advice ever is to go see your doctor.

Speaker 1 (20:53):
I guess so, yeah, you're right. If you see somebody,
do it trembling. Tell them you're close enough to them,
go to take them to doctor, get find out about
it right, find out that's right. Amy, Thank you so
much for doing this and thank you for everything you do.
And it's good to talk to again. Amy and I
have known each other a long time, so I just
appreciate talking to you.

Speaker 2 (21:13):
So thank you John so much for reaching out.

Speaker 1 (21:16):
That's Amy Johnson from the American Parkinson's Disease Association in Georgia.
You can find out more about them at Apdparkinson's dot
org slash Georgia. Alzheimer's Music Fest is now coming to Savannah.
It's cowboy Mouth. Vince and Garo and Carissa Rumsey are
on the board of Alzheimer's Music Fest.

Speaker 4 (21:33):
We started expanding to Savannah about three years ago. Fortunately,
our buddies Cracker headlined the first show and then cowboy
Mouth did the second show, and then we're going back
with the owner. John Henderson, a coach's corner, really wanted
cowboy Mouth back because of the response on Carissa, my
co executor, and I were pleased that he wanted to

(21:56):
partner with us again to bring cowboy Mouth and Ain't Sisters,
which I'm thrilled about the Aint Sisters and I love
Cowboy Mouth to Savannah at Coach's Corner on August sixteenth.
So we're pretty stoked about it, and to raise some
funds and bring some community outreach for people living with
dementia related diseases in their families.

Speaker 1 (22:14):
Carissa, you're ready to go with this one coming up?
We are.

Speaker 2 (22:17):
We're excited.

Speaker 3 (22:18):
There's a lot of buzz in Savannah. People seem excited
for it.

Speaker 1 (22:22):
You know, Cowboy Mouse a great band. Where can people
go to get tickets for that?

Speaker 2 (22:26):
Yeah, you can go.

Speaker 4 (22:27):
On Coach's Corner website. You can go to the Alzheimer's
MusicFest dot org or just nowadays just google it or
chept it and just put Savannah and it comes right up.

Speaker 1 (22:38):
The money you get from this goes directly to people
who deal with Alzheimer's. Talk about what you do with
the money.

Speaker 4 (22:44):
Yeah, look after costs basically of the event, which we
try to streamline it as much as we can. Fortunately,
a lot of freebies from people and then sponsorships and
we try to create support groups. Now that we're kind
of founding the Music Best as our own nonprofit, Chris
and I we're working on kind of respite outreach breaks

(23:06):
for caregivers, full time caregivers, at home family members, and
then also support groups and many other things. And we
also have the resources with great groups like BODAC and
Second One Dreams, you know, help with medical equipment and
so many other things that we do. And I'm very
excited to have Chris onboard. So I'll let chrisa talk

(23:28):
a little bit about it. She's really been a life
saver and.

Speaker 1 (23:31):
Yeah, yeah, Chris, what about it? Talk about it?

Speaker 3 (23:33):
Yeah, huge part of this, Yeah, yeah, part of what
we're building and what we're finding is that you know,
at home caregivers and people living with dementia and Alzheimer's
need resources, but also we reach out into all aspects
of the community to offer support. So even if you
have a loved one, you know, maybe you have in

(23:55):
home care, but you need additional support. We have wonderful
sponsors that come in and offer a lot of services
to the dementia in Alzheimer's community that we're able to
facilitate those resources directly to the people.

Speaker 1 (24:10):
Who need the most doing that now. And I know you, Chrissa,
you work in that industry with people who need help.
What then normally come to you and ask you to
help with the.

Speaker 3 (24:21):
Number one thing. Just as a senior care facility owner
in the state, the number one call that you get
are oftentimes people who are in a desperate situation. There's
an immediate need, they need immediate placement. They don't know
where to go, they don't know how to get resources.
And so I'm kind of uniquely in a position that

(24:42):
part of what I'm doing with this foundation and what
we're building with this nonprofit is challenging other facility owners
to open up resources within their facilities for people who
may be on a fixed income, may have lower budgets,
may not be able to afford in home care or
facility care. You know, really kind of challenge owners to

(25:04):
step up. There are thousands of senior care facilities within
the state of Georgia. If every single one of them
reached out to the dementia and Alzheimer's community to offer resources,
you can hit a large population.

Speaker 1 (25:17):
And one way to do it is with Alzheimer's Music Fest.
When's it coming up, Vince Don, It'll.

Speaker 4 (25:22):
Be August sixteenth, over our Coach's Corner in Savannah, Georgia.

Speaker 1 (25:26):
For questions of comments on today's program, you can email
me John Clark at Georgiannewsnetwork dot com. Thanks for listening.
I'll talk to you next week right here on your
local radio station on Georgia Focus
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