- Such powerful and heart-wrenching stories of resilience.

Good evening; I am Kenia Thompson, host of PBS North Carolina's "Black Issues Forum."

And thank you so much for joining us for this special preview screening of "Matter of Mind: My Parkinson's."

PBS North Carolina together with South Carolina ETV and Public Radio and RiverRun International Film Festival proudly present this important content and opportunity for a safe space to connect with others living with Parkinson's or caring for family members with Parkinson's.

I know at times, the film was difficult to watch and the conversation might be tough as well.

We all have different perspectives and opinions, so please show kindness and respect when entering questions and comments in the chat feature at the right of your screen.

A few housekeeping items before we begin.

Please post your questions for our panel in the chat to the right of your screen.

Make sure you tune in to watch "Matter of Mind: My Parkinson's" when it premieres on PBS North Carolina on Monday, April 8th at 10:30 PM, and tell your family and friends.

You can also watch it on the free PBS app.

Please share your feedback about the film and this event in our interactive audience survey by texting Parkinson's to 415-223-8013 or clicking on the link listed in the chat.

You'll receive an email next week with the link and the recording of tonight's panel discussion, resources, when and how to watch information, and the audience survey.

All completed surveys with a valid email address will be eligible to win a $50 gift card provided by Independent Lens.

Thank you again for joining us this evening.

As much as this film is about understanding Parkinson's disease, it goes beyond medical facts to explore the more human questions of how Parkinson's affects one's sense of self and people's highly individualized responses to this progressive disease.

This evening, we are thrilled to welcome a diverse panel of local experts who will discuss Parkinson's treatments, options, mental health resources, and answer your questions.

Tonight's special guests are Dr. Sneha Mantri, Associate Professor of Neurology, Vice Chief of Clinical Operations, and the Fellowship Director, Movement Disorders, Duke University School of Medicine.

Welcome.

Next, we have Kimberly Gamble, President-Elect Board of the Parkinson's Foundation Carolinas Chapter, Coordinator of Movement Disorders and Deep Brain Stimulation Program, Atrium Health, and Community Education and Outreach Advocate.

Next we have Diana Parrish, Development Director of Parkinson's Foundation Carolinas Chapter, and caregiver.

Then we've got Travis Turner, PhD, Associate Professor, Director Neuropsychology Division, Department of Neurology at the Medical University of South Carolina.

I wanna thank you all for being here with us this evening.

We have a lot to cover, so I'm gonna go ahead and get into our questions.

First, I wanna start with you, Dr. Mantri.

When folks hear Parkinson's, they automatically think tremor, which is the symptom most noticeable to others.

What are the most remarkable non-motor symptoms people with Parkinson's suffer from?

- Yeah, that's a great question.

I always think of the motor and the non-motor symptoms of Parkinson's as sort of like an iceberg, the motor symptoms being the top of the iceberg: the things that are visible to other people like tremor or gait difficulty.

But really, when you ask people with Parkinson's what affects their quality of life most, it is those non-motor things sort of under the water, if you will.

The sorts of things that I always think about, which we touched on a little bit in the film, are things like depression, anxiety, and mental health concerns are really prevalent and probably under-recognized in people with Parkinson's.

So it's important to both as a clinician but also as a patient or a care partner if you have those concerns to raise those at your clinic visits.

I also always think about sleep concerns in people with Parkinson's.

There's really strong evidence that certain sleep disorders such as dream enactment behavior or restless leg syndrome are strongly associated with development of Parkinson's disease.

So again, an opportunity for early intervention.

If you're noticing those concerns or if you bed partner is noticing those concerns, bring them up to your primary care provider.

Bring them up to your neurologist.

Because there's lots that we can do to help address some of those non-motor issues that trouble a lot of people with Parkinson's.

- Yeah.

Dr. Turner, as a neuropsychologist, can you please share with our audience what it is exactly you do and how you assist patients with Parkinson's?

- Yeah, that's also a really great question.

Because my title is pretty mysterious and people oftentimes don't have a good sense as to what they're they're getting into.

But as was discussed really pretty well in that film and as Dr Mantri was just saying, problems with mood and anxiety are extremely common in Parkinson's disease.

Between the two of them together, you're talking about 50% or 60% of people with Parkinson's will struggle with mood or anxiety issues at one point or another.

So that's about as common as tremor actually kind of, you know, the symptom that everybody thinks about.

And unfortunately, cognitive changes can come up as well.

It's quite different than what we see with Alzheimer's where there's a primary problem with memory.

It usually involves things like slower thinking, problems with attention, multitasking, sometimes visual spatial tasks.

And one of the tricks with Parkinson's is that, you know, these things can come up together and it can be hard to disentangle.

Is someone experiencing anxiety that's leading them to be confused and not being able to think through things clearly?

Or are they having trouble thinking clearly and that's then leading to anxiety?

Or maybe if they don't seem to have a lot of interest or motivation, is it because they have apathy, which is another kind of mental health issue that can come up pretty commonly in Parkinson's?

Or is it because they're having a hard time thinking about what it is they wanna do?

Or maybe they don't feel confident to want to engage in conversations with others because of their slower word finding or they maybe will tend to lose their train of thought.

So a lot of what I do is to first just have a discussion so that I can understand what their concerns are.

And then I do a certain amount of testing: usually some questionnaires related to memory or related to mood and anxiety and then some tests of attention, problem solving, language, memory, and so forth so that we can try to tease these things apart.

And then once we have a sense as to, you know, what's underlying the concerns, we can then come up with a more focused plan for treating that.

Whether it's a change in adding a medication, taking a medication away, recommending exercise, which I'm wearing my Moving Day thing.

So shout out to that.

That's coming up.

We want everyone to engage, socializing.

So that's really a lot of what I do as a neuropsychologist working within a movement disorders program.

- And a question that came to mind as you were talking is: Are these services typically covered under most insurance programs?

- Yes, they are.

So, okay, once again, the myth about, you know, Parkinson's being an older person condition was kind of dispelled during this film.

And that's very much true.

Average age of onset is 56 for women and about 55 for men, maybe a touch younger.

So these people are not gonna have Medicare.

Medicare does cover it and we don't have to worry about that.

We don't need prior authorization.

Most major healthcare companies, Blue Cross Blue Shield, they do cover these services.

When someone's referred to me at the Medical University of South Carolina where I'm at, there's prior authorization for it.

So people aren't stuck with larger bills.

But it isn't something that's free, unfortunately.

So it is something that people need to be savvy about.

- Good to know, thank you.

Next question is for Diana.

In your experience working at the Parkinson's Foundation and as a caregiver, what are the best ways for your friends or for friends and family to support someone newly diagnosed with Parkinson's?

- Yeah, Kenia.

That's a great question.

And I guess I need to share my story.

'Cause 18 years ago, my husband was diagnosed with Parkinson's.

And Dr. Turner, you're absolutely right.

He was 54, but he probably had it years earlier because he had a lot of early signs, but we didn't go to the doctor.

And the one thing is, it's a journey none of us anticipate.

Oh my gosh, you know, and you heard it in the documentary.

They were all shocked.

My husband had himself in a wheelchair in six months and dead in a year.

So the first thing we did, I told him, "We've got to find the go-to resource.

"Do not surf the internet."

And that's exactly what he did.

And it scared him half to death.

So the Parkinson's Foundation was the resource we found.

While the foundation does do research, we wanna find a cure.

We don't even know what causes it right now.

My family, we have three children, we're living with a disease we know nothing about.

Teach us how to live.

As Juan said, "Never give up."

And the Parkinson's Foundation was our resource.

That's why I chose to work at the foundation, to help others in the Carolinas.

You're not alone.

The movement disorder specialists are not in rural areas.

Like Peter had to move from Alaska to go find somebody, a neurologist, that knew a little bit more about Parkinson's 'cause it's an extremely complicated disease.

Every morning, Bubba and I wake up, that's my husband.

[clears throat] Sorry.

What's the new symptom today?

What is it gonna be today?

And it's happening after 18 years.

The meds are wearing off, but he's not letting it beat him.

So we tell our friends, "Listen, Bubba has a soft voice now."

Tell 'em to speak up.

You know, you saw Peter, they're working.

It's okay, don't be afraid.

Accept them, be patient.

As a caregiver, that's the hardest thing for me.

I'm five miles ahead of him and then I realize he's way behind me.

So you tell your friends and family, be patient.

Educate your grandchildren.

Our grandchildren know about Parkinson's.

They know.

I tell 'em, "Don't hit," they call him Booba.

"Don't startle Booba.

"Don't come up in the back.

"Don't trip him 'cause of the balance issues."

So there's a lot.

And people really wanna know.

But it's a scary disease 'cause every person with Parkinson's has different symptoms.

And that's what makes it so complicated.

So do your research and don't let 'em isolate themselves.

You know, our true friends, we go bowling and they... With Parkinson's, don't isolate yourself.

You can beat it.

And share the information with others, you know.

That's my... - Thank you for sharing that.

Knowledge is definitely power in this situation.

And sometimes people lead with fear, and that causes them to, unfortunately, act in ways that aren't quite loving.

But, you know, I think once we educate ourselves, it makes it a little bit easier.

Thank you for sharing your story with us.

Next question's for Kim.

Working in a movement disorder clinic and serving on the Board of Parkinson's Foundation Carolinas Chapter, with increased media coverage of Parkinson's, have you noticed changes in patients' reactions to the knowledge of the disease over the last few years?

- Definitely.

You know, I guess the best way to describe it is knowledge is power.

So when you know more, you're gonna be able to adapt.

And you're also gonna be a little more empathetic to the patient and more understanding.

There was a prime example in the film where the husband and the wife, you know, she was frozen.

And he said to try.

Because that's a natural response for people to tell you to try.

Well, she was trying and couldn't help it.

And then he caught himself and realized and went back and apologized.

So the more that you know and the more that we can share the information with the community, it's gonna make better acknowledgement and awareness across all communities.

- Mm-hmm, indeed.

Very similar to what we were just talking about before with Diana's husband.

So knowledge is definitely power.

Next question is for Dr. Mantri.

Dr. Mantri, in your position as a neurologist at Duke's Movement Disorder Center, working with Parkinson's patients and their families and caregivers daily and on a long-term basis, describe to us some of the disease modifying therapies that you prescribe for them.

- Yeah, we saw a little bit of that in the film actually.

You know, the number one disease modifying therapy for Parkinson's right now is physical activity.

Especially aerobic activity is where the strongest evidence comes from.

And from my perspective, you know, it doesn't particularly matter what type of aerobic activity you do.

You know, in the film, we saw boxing.

We saw walking and hiking.

I have patients who play tennis or pickle ball or run or swim.

It's important to find something that you enjoy doing.

Because that will make it easier for you to do it.

You'll want to do it and it won't feel like a chore.

But exercise really is so so critically important in Parkinson's.

I often think of the medicines.

And DBS and some of these more advanced treatments are there to allow you the strength and the flexibility and the ability to exercise.

Because that's what's going to help your Parkinson's stay as stable as possible for as long as possible.

There's also increasing evidence coming out in recent years around diet and Parkinson's.

Particularly, a Mediterranean diet seems to be effective at both slowing progression of Parkinson's for people who have it as well as reducing the rate of developing Parkinson's for people who are at higher risk either because of family history or environmental exposures.

So it's something that I try to counsel all of my patients on at the first or second visit.

You know, "Here are the things that you can do "to help yourself do as well as possible "for as long as possible."

Right now, the medications that are on the market and are available are symptom based and are very effective at treating symptoms of Parkinson's like tremor and stiffness and slowness.

But unfortunately, the medicines that are out right now don't stop the disease, the changes in the brain itself.

There are some really exciting things in clinical trials.

So I'm hopeful that in the next five to 10 years, we'll be able to make some headway in terms of finding a cure or finding something that will actually stop disease progression in the brain.

But for right now, the disease modifying treatments really are exercise and, like I said, increasing evidence around diet and Parkinson's.

- Thank you for that.

Dr. Turner, share with us what the most common misconceptions are that people have about Parkinson's disease.

- Sure.

What I think is... Dr. Mantri gave a really great metaphor for the motor symptoms being the tip of the iceberg and all the non-motor stuff being, you know, the 90% that's below the water surface that you don't see.

And I think that that's definitely true.

And for the longest time, all people really thought of Parkinson's was just the motor condition.

In the last few decades, we've developed an increased appreciation for all the non-motor stuff, things like slower GI motility, and constipation, sleep, cognition, changes in visual spatial abilities and vision itself, different pain sensations, and so on and so forth.

But I think that even with this knowledge that Parkinson's is not just motor symptoms, that it has all these other symptoms.

I think that oftentimes, people don't appreciate that these symptoms don't happen one at a time.

It's not just that you have tremor and then you've got anxiety and then the constipation comes.

They're usually existing at the same time.

And it does make life really complicated.

And it requires a lot more kind of thinking about, you know, what that individual person's constellation of symptoms is and how that's gonna impact them.

So to give an example, if someone is slower because they have Parkinson's, so they walk slower.

And they're going to the clubhouse for a social gathering.

And they also have some bladder urgency, so they don't have as much time to get to the bathroom.

They've got some social anxiety.

They're a little worried about presenting with a tremor and some other things.

And their thinking is a little slower, mild cognitive impairment.

So you put all these things together and that person may have a really hard time in that setting.

Because they're gonna wanna know where the bathroom is so they can get there quickly because they walk slower.

And they're gonna have that on the top of their mind.

And then they see someone that they haven't seen for a little while and they're a little shellshocked, "Oh, what's their name?"

And so all these things can kind of bounce off of one another.

And I think in considering what a person is going through and how best to come up with a treatment platform, I think you really just have to think about all these symptoms and how they interrelate within that individual.

- Mm-hmm; yeah, a lot to consider there.

Thank you for sharing.

This next question is for Diana.

Unlike the first film in the series, "Matter of Minds: My ALS," folks were often given a definitive timeline after their diagnosis, about two to five years.

Parkinson's doesn't do that.

If it's not too difficult, we'd love for you, Diana, to share how long your husband was suffering with Parkinson's.

I know that you said that there were some symptoms that you guys didn't quite realize maybe were symptoms.

And we'd love for you to share kind of that part of the journey and then specifically share resources or a treatment that you found that was helpful for him.

- Well, you know, the symptoms, the first one was we were in bed, and he was 56 when he was diagnosed.

But this was around 52.

I remember I was asleep and he hit me, this flailing of the arms.

And I think Dr. Turner and they've talked about that.

I thought he'd busted my nose and like, "What are you doing?"

And I gotta tell everybody, as a caregiver, humor is imperative.

Either you're gonna cry or you're gonna laugh.

You're gonna do both.

But humor.

So, you know, he chuckled.

He's had a lot of 'em, the non-motor symptoms.

I can't tell you how many people have argued with us, lately not so much 'cause I know what to say, insisting he doesn't have Parkinson's 'cause he does not have tremors.

70% have tremors from my understanding.

He doesn't have the tremors.

So obviously, he doesn't have Parkinson's, but he has almost every non-motor symptom.

What Dr. Turner just said: doesn't sleep, constipation.

Everything is all there but you can't see it.

So it's been a challenge.

But I'll tell you, everybody, especially at the beginning, exercise and movement, that made a huge difference.

Bubba played baseball in college.

And then golf was his go-to thing.

And I know for the cardiac but still for the mental.

So he was doing great for a long time.

Rock Steady Boxing.

I wrote the names down.

Veronica was doing it.

It is significant.

Tai chi.

It all depends, whatever movement you want.

Music therapy is also something.

Bubba loves to sing.

So we sing a lot at home.

Those things, and then the carbidopa/levodopa.

But I'll tell you, you're gonna get everybody watching us tonight that's on Parkinson's, that's the medication.

And that's where it's exciting about the new drug therapies.

'Cause for Bubba now after 18 years, it's not working.

So DBS is sort of what they're looking at.

But cognitively, we're not sure he can do DBS.

But the movement.

Keep moving; do not sit in that recliner.

You gotta keep moving.

And that made a significant difference for my husband for a long time.

But now after he turned 70, we're like, "Is this Parkinson's or is this aging?"

So we kind of add that humor in there.

But keep moving, keep moving.

- Yeah, thank you for sharing that.

I do wanna take a question.

There are some questions coming in from the audience.

Thank you for putting your questions in the chat.

Dr. Mantri, I think I'll direct this one to you.

If it's not a good fit, let me know and we'll shift from there.

The question is, "What are your thoughts "regarding focused ultrasound?

"I have a fighter whose tremors prevent him from sleeping.

"They do not want to do DBS.

"Is focused ultrasound with medication a good option?"

- Yeah, that's a great question.

And certainly, focused ultrasound is a very good and very effective option for many people with Parkinson's.

Like with anything else, focused ultrasound, DBS.

specific medications, it's always important to have that conversation with your doctor who knows your story and your symptoms and your medical history best.

Because there are risks with focused ultrasound, just like risks with anything else.

People can get numbness and tingling.

It can affect your speech.

It can affect your gait and your balance.

And so it's important to make sure that you're being kind of thoroughly evaluated both before deciding to do any type of procedure with Parkinson's, but particularly making sure that you're getting it done at a great center with, you know, a proceduralist who has a lot of experience.

- Yeah, thank you for sharing that.

Hopefully, that answered our audience's question.

I wanna go to Kim for this next question.

Again, audience, please make sure you put those questions in the chat.

We will get to them.

"Kim, you are the current Vice President "and the President-Elect "of the Board of Parkinson's Foundation Carolinas Chapter.

"Why do you serve on the board?

"And how important is this organization to patients "and families living with a Parkinson's diagnosis?"

- So my why statement.

I tell people, my story is the grace of God, honestly.

I was working in a hospital.

I have worked in healthcare for about 30 years.

Pretty much exhausted, moved around the hospital.

And I applied for a Sleep Center Coordinator job.

And when I got there, she basically told me that she could give me the job, but that I would be bored with it before the end of the second week.

And she said, "I have this Movement Disorders Center Coordinator job "that I think you would be perfect for."

And I said yes to it.

And as I said, yes, it was more so to learn new things, you know, a new challenge and to continue to grow at that point.

But as I started down the journey, it became a purpose for me.

That I was the one that could actually educate the patients, educate the communities.

You know, they go to the doctor's appointments and sometimes they understand, sometimes they don't.

Then when they get home, they still have questions.

Some people aren't comfortable asking the questions that they really wanna know.

So I'm that personal contact that can actually sit down and take the time and answer those questions and sometimes explain it in more layman's terms than what they learned in the doctor's office.

So my why is definitely just to help support the community so that they are better educated, and then empower them to help them on this journey, to also let them know that they're not alone, that they have an advocate, and to connect them with the resources and people and other things to help them live better with Parkinson's.

So that is my why.

And 20 years in, I'm still at it.

I love it.

You learn and meet new people and new family every day.

So it doesn't get any better than that.

- Thank you for your work in that.

Thank you.

We have another audience question.

And I'm gonna point this to Dr. Turner.

Simple, but I think a very convoluted question here.

"My dad has Parkinson's and my mom is in denial.

"Should I show them the film?"

Before you answer that, I would love to, if you have insight on it to talk about the stages of grief that goes through a Parkinson's diagnosis.

And I imagine denial is one of those.

- Oh yeah, absolutely.

And I mean, really, people respond quite differently.

I mean, there are some people who get the news, they get the diagnosis and they say, "Hell, no."

And the next week, they're looking for Rock Steady Boxing.

And there are other people who get the news and they put it off.

And, in fact, really, many people put off getting that diagnosis for quite some time.

Most everyone can see they've got a tremor or they're shuffling.

They don't want to get that information.

They don't want to hear that.

So yes, people definitely do go through the different stages.

And I mean, obviously, in the same way that one would grieve the loss of...

In the same way one would grieve the loss of a loved one, there's a similar process to Parkinson's in terms of coming to accept, "Okay, this is what we're dealing with.

"And this is what we can do about it."

And one of the things that... You know, I have a lot of hard conversations in my clinical work because I'm the one who gives the dementia diagnosis, and nobody wants that.

But the thing is that I don't give anyone dementia.

They have it; they've had it.

They've been struggling.

And they've been having issues in day-to-day life.

And people see it.

And their loved ones don't want to see it, but they notice it.

And what I try to do is pivot on that and say, "Okay, now that we know what this is, "now that we know what to call this, let's do better.

"Now we know what the problem is, "let's stop getting tripped up by it."

Let's come up with a better plan so that someone isn't constantly losing things or there isn't a constant question as to: Is this person really trying?

Or: Are they, you know, actually struggling?

So, you know, I mean, gosh, I feel like knowledge is power keeps coming back up and I don't wanna have that as a cliche, but it is absolutely true.

So to go back to that, the audience member's question, should they show this video?

I mean that's obviously a very personal thing.

I think it's a tremendous video to watch.

And I mean, I can't speak to anyone's personal thing, but this was really quite a well produced piece.

And I think it really showed the human side.

And I'd like to think that it would help someone who was kind of in denial or not willing to recognize things come to see some of those symptoms but also see, you know, what these people like Juan Solano found.

Like who knows what happens?

You might live.

You know, there's certainly hope here.

- Yeah, I agree.

I'm not an expert in the field, but I would agree.

If it were to happen to me, I think the film would give me some understanding.

And so I think it would be a good thing to share.

- And it doesn't gloss over stuff.

- Yeah, right.

- It doesn't gloss over stuff.

It shows the complexity of it.

But within all the complexity, it definitely offers hope, which I do.

I wouldn't be doing what I'm doing if I didn't see that there was hope.

- Yeah, thank you for sharing that.

"Dr. Mantri, what can or should folks "who live in rural areas or areas "without movement disorder specialists and clinics do?

"Do they have options?

"What are they, and where should they seek help?"

- Yeah, it's a great question.

And it's such a challenging question I think for so many people living with Parkinson's.

Because, you know, as the film alluded to, movement disorder specialists are often located in large academic or large corporate medical centers.

For instance, I am here at Duke University, which is a fantastic place but is sort of located right in the middle of North Carolina.

And I have patients coming to see me from both the coast and from the mountains because there really are no, or very few, movement disorder specialists in most of the state.

And that's probably true across the country.

Most movement centers where you have access to fellowship-trained movement disorders doctors and neuropsychologists and speech therapists and physical therapists, all of these people that you want on your team to help you do well with Parkinson's, tend to cluster in cities or in large academic spaces.

I think this is one way that, you know, perhaps there's a little bit of a silver lining from the pandemic and the fact that we all became so used to telehealth, and the fact that telehealth is, I think, in a large way here to stay long-term.

Because it really allows people who live hours away from their movement doctor to still be able to touch base with that person, you know, in between perhaps yearly visits or twice a year in person.

But you can do touch-base appointments in between times and check in and see how things are going.

And, you know, speaking for myself as a movement specialist, so much of what I'm doing is observing the patient: watching them walk, having them do specific tasks like finger tapping and hand grips and so on.

And I can do most of that on video as long as somebody has a good strong internet connection and feels comfortable with the video modality.

So I think that is, you know, one opportunity that can help people who live in rural areas still have access to high quality movement disorders care.

And I think that, you know, I hope that the infrastructure and the broadband internet and so on will continue to roll out across the state and across the region so that we can keep reaching people, sort of meeting patients where they're at, in their own homes if we can.

- Thank you.

We have another question from the audience.

Dr. Turner, I think I'll give this one to you.

"Red light therapy, is it a proven therapy "or is it just smoke and mirrors?"

- I would like to answer that, but that is really not something that I know anything about.

I'm sorry.

- That's okay.

- Dr. Mantri, do you have any insights on this one?

- I would also punt this.

I haven't seen strong and well conducted studies of red light therapy.

So I don't think that I can say one way or the other.

- That's fair, thank you for your honesty.

Anyone have any experience with it at all on the panel?

Okay, that's okay.

Diana, I wanna go to you for this next question.

"What do organizations "like the Parkinson's Foundation Carolina's Chapter do?"

- Mm, a lot.

[Kimberly and Kenia laugh] We talked about how the doctors are in the larger cities.

You know, Durham.

We have three centers of excellence in the Carolinas, you know, Medical University of South Carolina, Duke and UNC.

But as the Parkinson's Foundation Carolinas Chapter, we wanna reach those people in the rural areas.

Because we have the tools.

The tools the foundation has are absolutely amazing.

They have books on medications.

They have a book on DBS.

They have a new hospital safety guide.

When people with Parkinson's get admitted to the hospital, they're not gonna get their meds on time.

And that happened to my husband.

So we are teaching people how to live with Parkinson's and how to be safe.

We have books on intimacy, mood changes.

So what we do, we're an amazing resource.

We have a day called Moving Day where we have one in Raleigh, Charleston, and in Winston-Salem where people come together.

And one thing about the Parkinson's community, while I totally agree with Zoom and the virtual, the people that I have found that really are beating it are those that are at the support groups and those that are doing Rock Steady Boxing.

They need to be together 'cause they realize they're not alone and they have a common goal.

And they're fighting this disease together and they become a family.

So we're the connectors.

The Parkinson's Foundation too, like our next task that we're gonna do in the Carolinas, and Kim is gonna lead the effort as president, we wanna meet with those neurologists in the rural areas so we can give 'em our resources.

You know, they'd say, "We don't know much about it here."

We can educate you.

We have labs, teaching courses.

So we do an awful lot.

And again, that's why I chose to retire with the Parkinson's Foundation.

Because we do amazing work to educate the community and bring everyone together.

- Yeah.

What if we have some folks in the audience that are watching and they're asking, you know, "What can we do?"

Even if they're not impacted by Parkinson's either through family members or themselves, is donating financially the best thing to do?

And if they're not in a space to financially support, what are volunteer opportunities that might be available?

- You can do a lot.

You can do a lot.

Financial support, yes, we're a nonprofit.

I tell everybody, "Of course, we're raising money."

We don't charge anything for our resources.

We actually provide no-cost genetic testing, which is a significant, it's a huge program.

But if you can't make a donation, yeah, the donations help us do the mission programs and everything that we do, we do need volunteers.

I was hired six years ago and I covered all the Carolinas as a staff member.

Now there are three of us.

But it's people like Kim Gamble and others that are volunteers.

And our board is amazing.

We have physical therapists.

So we'll put you to work.

And Kim, I know you can chuckle at that.

But now, we do a lot.

Our board members and our volunteers, we become a family because we know we're making a difference.

So call, we'll get you involved.

- The one thing I would say to that for the people that are at home that's not directly affected by Parkinson's disease is reach out to the Parkinson's Foundation through their helpline and get connected with their local chapter.

Because there is always need and ways that they can support this community.

- Thank you, and thank you.

- Kim, great point.

I just assumed most people were in the Carolinas, but you're absolutely right.

There are 17 chapters across the country.

I mean, we're an international organization.

So Kim, great point.

- Can I jump in here too and say one thing to this?

And that is that the Parkinson's Foundation really does a tremendous amount to support the work that we do in clinic.

So when we were named a center of excellence, that was not just a feather in our cap.

At the time, I didn't really know what it was going to mean.

But what I came to learn that it meant is that for myself, I got to go to some of the annual summits and get additional training to participate in Allied Therapeutic Partner Training and to be a trainer myself.

And so there's no better way to really learn something than to train others with it.

And for us to have an interdisciplinary clinic and a coordinator for that where someone can come in and they get wraparound service.

They come in and it's a wonderful program.

There's a neurologist, there's myself, there's a geropsychiatrist, physical therapy, occupational therapy, speech therapy, palliative care, and a social worker.

You get that all in one very busy day.

But it does not happen without the support from the care coordinator that is funded by the Parkinson's Foundation.

So it really is a big deal to be able to work within one of these centers.

So we certainly do appreciate the support from the foundation.

- Yeah, I would absolutely echo that.

I think interdisciplinary and interprofessional care is really the way to go for caring, I think, for any neurodegenerative condition but certainly one as complex as Parkinson's.

And we would not be able to do the education and the work that we do without the Parkinson's Foundation support.

I'll also add that, you know, if people who have been watching this have been feeling inspired by the documentary or the conversation, remember that we're coming up on Parkinson's Awareness Month in April and raising awareness in your local communities about what Parkinson's is.

Make sure that you see a neurologist, a movement specialist, get people in your corner, and that there are things that we can do to help you live well.

I think that would be the most amazing thing that could come out of this.

- Thanks for sharing that.

We are getting close to the end of our time.

So I wanna put in one last audience question here.

Dr. Mantri, I think I'll give this one to you.

"Do we know if there are any environmental causes "of Parkinson's?"

- Yeah, I would say that, you know, the majority of Parkinson's is probably caused by an environmental trigger.

And the specific trigger is, you know, a little bit I think unclear at this stage.

But we do know that pesticides are a huge risk factor for Parkinson's.

We've seen it, for instance, in Vietnam veterans who were exposed to Agent Orange.

We've seen it here in the Carolinas, people who were stationed at Camp Lejeune and were exposed to water that was contaminated.

And I think we're seeing growing evidence of pesticides and herbicides as a big trigger for later development of Parkinson's.

The other big risk factor that comes up quite frequently in epidemiology studies when we're looking at thousands of people across the world with Parkinson's is head injury.

Closed head injury and concussion increases the risk of all neurodegenerative disorders, but in particular Parkinson's disease.

And an unrelated condition called chronic traumatic encephalopathy do seem to be strongly associated with closed head injury.

- Thank you for sharing that.

So we've got just a few minutes left.

I want to add one final question.

And this goes to Diana and Kim.

Maybe about a minute each for a response.

What have you seen improve the most over the years for patients and caregivers?

And do you think things will get better?

- Can I go first, I guess, Diana?

- Sure.

- So yes, I think the thing that I have seen improve the most in this space is the resources.

You know, the Parkinson's medication, kind of that golden standard of the carbidopa/levodopa the sentiment, that has been the basis of most new medication just in a different format or a delivery series.

So you've had improvement there with medications.

But I think just awareness and the fact that more people know more about Parkinson's disease.

Because you have the Parkinson's Awareness Month in April.

You have organizations and foundations that are out there.

So for me, I think the information that's available that they don't have to cipher through when they do the Google searches and the search engines, for me, is the most thing that I've noticed improved over time.

And, of course, you have to remain hopeful that things are gonna continue to progress toward a cure for Parkinson's disease.

- Thank you.

Diana.

- You know, and I'd say from 18 years ago when my husband was diagnosed, there's a significant difference in outreach in people with Parkinson's now coming out.

It used to be that they isolated themselves 'cause people thought they were intoxicated.

They were embarrassed.

I'm like, "What do you have to be embarrassed about?

"There's nothing to be ashamed about."

I think they're becoming, "This is awkward.

"I have Parkinson's.

"I gotta live with it.

"And I'm gonna still live the best life that I can."

Bubba, when he went to his first support group, we walked in and walked right out 18 years ago because they were all in wheelchairs.

That's not what support groups look like today.

There are young onset.

There are those and they're helping one another.

And even those that are older, you know, they're there 'cause they're inspired by the younger people and what they're doing.

So I really do see, I don't think acceptance is the word.

People are getting educated.

They're learning about the disease.

I think there are a lot more people living with Parkinson's than a million in the country.

I really do.

So I think there is hope, and I think for research and new drug therapies.

But I think there's been a real change in raising awareness.

"Doggone it, I didn't want this diagnosis.

"But I have it.

"Now how do I live with it?"

- Yeah, thank you all so much.

We are out of time tonight.

We could go on and on.

I'm sure there's so much more we could talk about.

But I wanna thank all of you, Dr. Mantri, Dr. Turner, Diana, and Kim for being here and sharing your time with us for this important cause and topic.

Many thanks to our ASL interpreters, Karen and Monica.

We thank you, too, South Carolina ETV and Public Radio and RiverRun International Film Festival for partnering with us on this important screening and discussion.

We wanna thank the Parkinson's Foundation Carolinas Chapter for their assistance with tonight's event and their promotion of the event, and all your organization will continue to do for families and patients living with a Parkinson's diagnosis.

And we wanna thank you all for logging in and participating in the conversation.

Please, again, be on the lookout for an email that you'll receive next week that will contain the link for the recording of tonight's discussion, information about our panelists, and the issues covered tonight.

The audience survey text option, text Parkinson's to 415-223-8013 and information on when and where to watch and stream "Matters of Mind: My Parkinson's."

"Matters of Mind: My Parkinson's" premiers on Independent Lens on Monday, April 8th at 10:30 PM on PBS North Carolina and on the free PBS video app.

To ensure PBS North Carolina continues to bring you popular PBS shows, riveting documentaries, informative how-to programs, fun lifestyle shows, "Rootle," our 24-hour kids channel, and free screening events like this one, I hope you are inspired to make a tax-deductible donation to PBS North Carolina safely and securely at pbsnc.org.

If you are already a member, we appreciate you and we thank you.

Please also consider supporting tonight's event partners: Parkinson's Foundation Carolinas Chapter, South Carolina ETV and Public Radio, and RiverRun International Film Festival.

And, of course, don't forget to watch me, Kenia Thompson, on "Black Issues Forum" on Fridays at seven PM on PBS North Carolina and on the free PBS video app.

Thank you again for joining us.

Stay safe, stay well, and have a good night.

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