ANNOUNCER: This is a Nebraska Public Media Connects production in partnership with Parkinson's Nebraska.

(gentle music) LAKELYN: Former First Lady Rosalyn Carter once said.

"There are only four types of people in the world: Those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers."

Hi, I'm Lakelyn Hogan Eichenberger.

I'm a gerontologist & caregiver advocate at Home Instead And I'm here to talk to you today about a disease that affects thousands of Nebraskans and their families: Parkinson's disease.

Parkinson's is a degenerative disease caused by a deficiency of dopamine in the brain.

It is progressive, currently incurable, and the second most common neurodegenerative disorder in the US.

It is estimated that there are over 1 million people in the United States with Parkinson's disease.

And that number is expected to rise to 1.2 million by the year 2030.

The symptoms of Parkinson's disease can vary from person to person and can include tremors, slowness of movement and rigidity.

Difficulty with balance, swallowing, chewing & speaking, cognitive impairment and dementia.

Mood disorders, and a variety of other non-motor symptoms.

If you're older than 60, male, if you have several family members with Parkinson's or have had ongoing exposure to herbicides and pesticides, you may have a greater risk for Parkinson's disease.

A common misconception is that Parkinson's disease is a death sentence.

While this disease can cause difficulties or more obstacles over time, it does not substantially reduce life expectancy.

There are ways to treat symptoms with both medications and exercise, which we'll talk more about in today's program.

In 1996, Nebraska became the first and only state to create a Parkinson's disease registry.

According to the latest report, more than 16,000 Nebraskans were diagnosed between 1997 and 2016, and each of them have a story to tell.

Meet Donny Schaaf.

NARR: Take one look in some Donny Schaaf's apartment and you'll know - he's a racing fan.

In a cruel twist of fate, it was a car that changed his life forever.

DONNY: I was hit by a drunk driver at 10 in the morning, and he hit me so hard that broke my seat and seatbelt.

Well, that started destroying the dopamine in my brain.

The ability to have dopamine in my brain, the tremors fully started and I struggle.

My memory got real bad.

My speech started getting real bad.

NARR: After several neurologists and hours of testing, Donny was diagnosed with Parkinson's disease at age 45.

NARR: It's about the same time they told me I couldn't work anymore.

They told me I couldn't drive.

To take the two, those two freedoms away from me that fast.

And it, depression hit real hard.

And that's when this little booger came into my life.

So in my medical, oh yeah, hi.

NARR: After a counselor recommended that he get a therapy animal, Donny adopted a stray cat named Socks.

DONNY: I was on the brink of suicide before I got her and she's changed my life.

NARR: She's a constant companion, and simple needs like feeding and changing the litter box remind Donny to keep moving each day.

Since then, he has committed to working hard to keep his symptoms at bay.

He gets regular Botox injections to help with his muscle rigidity and does daily exercises at home.

Donny was one of the first patients in Nebraska to have deep brain stimulation implants inserted on both sides of his brain.

These are controlled by phone, as is another implant to help control his bladder, another side effect of Parkinson's disease.

And perhaps most importantly, he sees a physical therapist.

How are everyday things going?

Cooking, cleaning laundry.

DANIELLE: I started here in 2018 and he was one of my first LSVT big patients.

This was one of those programs that we saw him and he was the perfect patient to go through it.

DONNY: LSVT-BIG is you, you do exercises where you, you do extreme.

Like instead of like, just when you walk side to side, you know, you really get your arms out there and you really get 'em back.

And when you do like stretches, you stretch as far out as you can.

You wanna do everything big because the way other people see it, it'll seem natural.

It'll seem just normal to them.

What seems what we're trying to do big.

Point that toe the direction you're going.

DANIELLE: He's been great to work with.

And he always follows you on anything that we're recommending.

DONNY: You know, we have such a relationship to where she's not afraid to say, "Okay, you know, knock it off, you know, you gotta get, you gotta put more effort into it."

When's the last time you tied 'em on your own?

DANIELLE: I would say 90% of my job is education.

Just breaking down what's going on with them, figuring out they're having this problem and then saying, "Okay, well let's problem solve it together," and explaining why they're having the problem.

DONNY: I mean, it's hard work.

I mean, you're there each time, you're there for two or three hours and they're pushing you.

NARR: Danielle is just one of a handful of doctors that Donny sees, including a pain specialist, a neurologist, and a counselor.

Scheduling umpteen appointments and coordinating rides through Medicaid is no small feat for someone with memory issues, but he's navigating it all with patience and grace.

DONNY: My planner helps me make sure I remember, remember appointments and schedule rides for 'em.

This is my meds I take.

If I didn't have this, I, you know, I'd have like 20 bottles laid out, trying to do every day.

NARR: Donny still has hard days, but his outlook has changed a lot since the dark days of his depression.

He is active in an online support group for people with early onset Parkinson's.

He wears funny shirts and socks to keep his doctors and fellow patients smiling.

And he lives by his motto to never give up with the help of his support system.

DONNY: Have patience and, and, and get knowledge, have the right medical team and have a strong support system.

LAKELYN: If you need help finding the right medical team or support system in your area, please go to parkinsonsnebraska.org, where you can find educational materials, online classes, and a list of trained therapists in your area.

Jamie and Pat Jamison of Norfolk talked with us via Zoom about their journey with Parkinson's and the importance of a good support system.

JAMIE: I was diagnosed in December of 2004.

I guess the last few years I've been just been slowly working out of things I used to do, 'cause I can't do 'em anymore.

You just can't do what you used to do.

Your, your legs don't work the same way they used to, your hands and arms don't work the same way they used to.

PAT: We've had a lot of people that have had Parkinson's in our church, so they understand what And they're really supportive.

JAMIE: The support group is where you, you find out all about the disease and what you can do to to combat it.

For those that are, that are just being diagnosed, (indistinct), I'd say the best thing they can do is join a support group and, and learn from that support group.

That's where you get, you compare notes with other people that have Parkinson's.

You find out the medications and new things that are on the horizon.

It's just a great place for information and, and a great, and there's a social part of it too.

PAT: Everybody kind of gives their own opinion what's going on in their life and stuff.

I mean, it's just better for 'em to be around people, to, you know, talk about things.

JAMIE: I guess a guy can feel sorry for himself, but I've never felt that that accomplishes anything.

So I just try and put it aside and, and realize this is a new normal for me and that this, this is the way I'm gonna live my life.

LAKELYN: No matter where you live, support is available.

Parkinson's Nebraska has support groups listed on their website.

You'll find them under the resource tab at parkinsonsnebraska.org.

Some groups meet in person and others offer virtual meetings online.

If you're living with or caring for someone with Parkinson's, please reach out.

Here to talk with me is the executive director of Parkinson's Nebraska, Emmy Smith.

Thank you so much for taking time to talk with me today, Emmy.

EMMY: Of course, glad to be here.

Thank you.

LAKELYN: So in Nebraska, when someone's first diagnosed with Parkinson's disease, they often first turn to your organization.

Tell us what you, you tell them, how you support them.

EMMY: Absolutely.

After someone is diagnosed in Nebraska, we want their next step to be, to connect with Parkinson's Nebraska, regardless of where you're living.

We want our team to support you with our resources, our expertise and, and medical staffing and therapy.

But our next step right after a diagnosis for Parkinson's is to reach out to Parkinson's Nebraska and we will help to steer you in the right direction.

LAKELYN: That's wonderful because we know the importance of connecting people to resources, making sure they don't feel alone.

really does take a village, isn't that right?

EMMY: Absolutely.

Our three pillars of connection are through education, awareness and collaborating.

So our goal is to make sure that if you're calling from Grand Island and you're just diagnosed with Parkinson's, we can connect you and collaborate and educate you with people near your area.

It does take a village and community support is huge for people that are diagnosed with Parkinson's.

It's not just about the person that was diagnosed.

It's about their family and friends.

And so building that community is really important.

LAKELYN: Oh, absolutely.

And to know you're not alone because I think so often caregivers, people diagnosed with Parkinson's, they might feel alone on this journey.

So being connected is so key and people might not know this about you.

Your organization is, you're not a chapter of kind of a national organization, you're very local.

Can you tell us more?

EMMY: Yes, absolutely.

We were established in 2013.

Colleen Wuebben is who established the organization initially.

She was diagnosed very early at the age of 52 and didn't have any resources in Nebraska and educated herself and did a little research and then decided we need something in Nebraska.

So she established Parkinson's Nebraska.

And from there, we've just kind of ran with again, collaborating, educating and bringing awareness to all persons with Parkinson's in Nebraska.

LAKELYN: Wow.

And I love how you serve the whole state, not just in Omaha, Lincoln, but all the way across, all the way west.

So thank you so much Emmy for, for being here and for sharing the important resources that Parkinson's Nebraska has to offer.

EMMY: Absolutely.

Thank you.

LAKELYN: We've talked about balance and movement issues that come along with Parkinson's disease.

In addition to individual therapy, some Nebraskans are finding benefit, both mental and physical from a boxing class.

(In unison): Rock Steady rock stars!

(boxer hits bag) MEGAN: Rock Steady boxing class is a class for Parkinson's, people with Parkinson's disease.

And just trying to kind of delay the process of their symptoms.

Two feet in each box, start with the left.

It's kind of like a support group, I guess, where they work out.

But also I know that in the end, the most important part is the friendship and the community feel of it.

SHARON: When I first heard about it, I thought, "Boxing??

You know, what that's gotta do with Parkinson's, really?"

It's, it's more than just the boxing and the physical aspect of it.

It's more like the camaraderie of other people doing it.

Support, I mean, the physical does definitely help, but it's also a cognitive thing too.

Twisting out the arms a little, shake 'em out.

LARRY: I think the stretching is the most important for me.

If you don't work your joints and arms and muscles every day, you're gonna get to the point where you can't stoop over, you can't bend down, you can't reach things.

And I think this is an easy way for me to, to maintain the abilities I have.

RICK: Parkinson's is not gonna go away.

The more you can do to maintain the easier it is as you progress through the disease.

So the more exercising you can do, stretching you can do, boxing you can do, the better it is.

DARLENE: I come just to support him.

I'm basically his full-time caretaker, 'cause he has Parkinson's, but he also has Lewy bodies with his, which is a little more of the dementia side.

So sometimes he struggles a little more with staying on focus.

SHANE: I was a firefighter for 30 years and I could tell it is that my, what my body was doing to it.

SHARON: You have to retrain the brain actually to be able to do the things.

Mirrors help wonderful, like in physical therapy and stuff, to see what you're doing.

That's why all the mirrors are up in what you're doing your exercises.

MEGAN: The mood in the gym, I think it's very fun, uplifting, give each other knuckles when they walk by.

SHARON: I accept the fact that I have it, but it was like, I'm gonna fight back.

The more active you are, the more you can hopefully keep it at bay.

I feel so much better after doing the, you know, the boxing and stuff.

It's amazing 'cause you'd think you'd be tired.

You think, you know, after three hours of doing exercises and doing things and I'm more energetic after that than, you know, just sitting at home.

2, 3, 4.

RICK: You don't die because of Parkinson's, you die with Parkinson's.

So it's not a life and death disease, but it does progress to where it feels like it.

I not only do boxing, but I go to chair yoga three times a week.

So the more you can exercise, the more you can do, the better off you're gonna be.

LARRY: I've worked hard all my life.

And for me working hard at this class, even though it's just a couple times a week, it helps me to remember why I'm here.

And to remember I have a family out there that wants me to stick around for a while.

So I do everything I can to do that.

Thanks for coming!

Rocksteady Rock Stars!

Kick Parkinson's out the door!

(laughter) LAKELYN: There are 800 Rocksteady Boxing locations across the world.

To find a program near you, go to Rock Steady boxing.org and a reminder that there are many other exercise programs for Parkinson's all over Nebraska, including Delay the Disease, Live IT Up and Dance for Parkinson's, which has DVD classes available.

Here with me now is Dr. Mara Seier, a movement disorder specialist at the University of Nebraska Medical Center.

Thank you for being here with me today.

Dr. Seier.

MARA: Yeah, thank you for having me.

So let's start off by talking about what is a movement disorders specialist?

MARA: That's a great question because even in the medical community, I still think that, that that's sort of a mystery.

So a movement disorders specialist is someone who has gone on after their neurology residency.

So after medical school, four years of neurology residency and then another one to two years of movement disorder fellowship.

LAKELYN: Okay.

MARA: And so I, for example, did two more years and what I spent doing that time was specializing in things that are enveloped in the movement disorder category, including Parkinson's disease, things like tremors, abnormal movements, ticks, difficulties with walking.

But a lot of the time is spent learning about how to care for Parkinson's patients, which involves advanced treatments, things like deep brain stimulation & Botox injections.

LAKELYN: Wow.

I didn't know about the Botox injections, but why would it be important for somebody to have a movement disorders specialist in addition to a neurologist?

MARA: And ideally, all patients with Parkinson's should see a movement disorder neurologist.

I may be a little bit biased, but that is not always a reality.

There's only a handful of movement disorder neurologists in Nebraska.

And we can't serve the thousands of patients.

So that is kind of taken up by the general neurologist in the community and across the state.

And so oftentimes we are seeing patients on a less frequent basis just to sort of give some support and some recommendations and may see them on a yearly basis where their local neurologist may see them more frequently.

But the main advantage of a movement disorder neurologist is those advanced treatments I sort of alluded to earlier because we get specialized training.

When the disease becomes more complex and complicated, we sort of have our hands on the pulse of those more complicated treatments, things like that deep brain stimulation and other modes of advanced treatment for Parkinson's.

LAKELYN: So it sounds like a movement disorder specialist would be a really nice complement to the person's care team.

Of course they're gonna have that local neurologist that they're seeing, their primary neurologist, but then adding that layer of care on top really just provides that extra support.

MARA: Yep, exactly.

And sometimes we are the patient's only neurologist, but then again, when it's there's that distance and that lack of accessibility, then we kind of can work with the patient's local neurologist.

LAKELYN: That's wonderful, and I understand that at the University of Nebraska Medical Center, there is a Parkinson's clinic.

So can you tell us more about the clinic?

MARA: Yeah.

So we have a clinic and we call it the Parkinson's Disease Multidisciplinary Clinic, which is sort of a mouthful.

LAKELYN: Yes.

MARA: And what that means is that in addition to seeing the neurologist, you are also seeing a plethora of specialists in Parkinson's disease, which includes our physical therapists, occupational therapists, speech therapists, dietician.

We have a dietician who specializes in Parkinson's care, as well as a social worker.

And then our case nurse managers, who have done Parkinson's movement care for many, many years and have a ton of experience.

LAKELYN: I love that people can go there and kind of be a one-stop shop.

They can meet with all of those different providers and, and again, get that really needed support.

So.

MARA: Exactly, and that's exactly how it was created so that patients could come to one visit.

We could sort of comprehensively look at the patient, give recommendations.

And so then patients leave with those recommendations in hand, as well as we send those then to their local primary care doctor or even local neurologist.

And so we can either follow up with them or they go back and see their previous neurologist.

LAKELYN: That is so wonderful.

Well thank you for all the support you provide to Parkinson's patients in our state.

And we just really are glad that you joined us today.

MARA: Well, my pleasure.

LAKELYN: In addition to physical health, Parkinson's disease often impacts a person's mental health.

A new workshop is combining art therapy, movement and music to improve both.

(peppy music) GEORGIE: Play, Move, Create is an awesome experience that we created, where we blend music, movement and artistic expression together in a one-hour setting.

Cutting the plant, we were talking about how communities help us feel rooted.

HOLLY: I, I think it's really, really powerful because it's giving them this one hour in which they're getting something visual, tactile, but then they're also getting music, singing and movement like all together.

They're just having this like one-stop shop for like the arts.

NARR: Play, Move, Create is a workshop at Omaha's Intercultural Senior Center with Parkinson's disease in mind, but people with and without the disease attend for a variety of reasons.

ANN: Oh, I think I've had Parkinson's for about 3 years.

There's a lot exercise classes you can do and things like that.

But this is one that's really nice and relaxing and fun.

NARR: Some even attend remotely.

GERALD: I've had the Parkinson's diagnosed about eight years ago.

The Zoom has made it possible for us to get the information and exercises without have having to leave home for a road trip.

EMILY: I love that Gerald continues to join us every week.

He gets so much out of our groups together.

I have adapted instruments.

So should there be somebody who has struggles with grasping, I have instruments that help somebody to still play that instrument and, and music is so success-oriented that everybody can make music, everybody.

And Parkinson's patients, they find that their tremors a lot of times will decrease or sometimes go away completely when their preferred music is present, especially when it's live.

I can change the tempo based on what people need.

That's not something you can do with recorded music if you need it.

So the live music is, is an incredibly valuable piece of, of the puzzle.

♪ Everybody shake, rattle and roll.

♪ They find that they're able to in this group, to be part of the group, to make music together, to be in community and have fun.

I mean, increasing quality of life is always is a goal for every single patient I work with.

And honestly, one of the best things about music therapy is that it doesn't feel like therapy.

Looking good.

GEORGIE: It's just always fun because as soon as you turn the music on, you know, the little feet start tapping and the shoulders start moving and they start getting louder and they, they just wanna go and it's like, "Go!"

you know?

We'll just guide you.

You, you can name your plant.

HOLLY: I see that process of like making something with a group of people as so much deeper than just making a product.

There's stuff that goes into that.

That process is what's like the healing, the powerful part, the community building part.

So there's things that we do, whether they might like tie back to something we did in childhood, but that it, it can create this like placebo effect of then taking away the symptoms that are then linked with the Parkinson disease.

So I feel like those tactile things that we're doing that we don't often allow ourselves to do, are a conduit of joy for them.

LOU ANN: The art is very creative and I just find it very uplifting and joyful.

NARR: The workshop also brings awareness to populations who may not recognize Parkinson's disease as quickly or have the vocabulary to express it.

CAROLINA: It's a little more difficult I think for our, especially for our Karen or Nepali community, to identify those kinds of problems.

Many times that is hard for them to express what they, how they feel or what they're finding within themselves.

And, and, and it might be Parkinson.

But I think that having those workshops here, it helps them to learn about it.

(group claps rhythmically) (in Spanish) INTERPRETER: I don't have that disease, but the class has shown me how to be a little more patient with people who do have it and has helped me to be more aware of it.

CLARA (in Spanish): INTERPRETER: These classes really help me find that inner child or that inner little girl that I lost a long time ago.

It really helps me connect back to my body, back to my roots.

ESPERANZA (in Spanish): INTERPRETER: It's a great way for me to sing and dance and just forget about everything for this one hour each week.

I am honestly just so happy that the time flies by so quickly.

CLARA (in Spanish): INTERPRETER: I've been to a lot of therapies throughout my life.

And this one is honestly really different, 'cause it's not a formal kind of therapy.

It's a very expressive, very self discovering, very like self manifesting kind of therapy.

You really discover who you are and what you want to find back within yourself when you come to these classes, it's something very special.

The more I'm active and the more I face things, it'll slow the progression, you know.

I can't do anything to totally stop it, at least so far, but I can at least slow it down.

And so it's just kind of fighting back.

No, I'm not gonna let this take over my life.

(raucous music) LAKELYN: You can participate in the Play, Move, Create workshop too.

to check out the class schedule and register via Zoom, visit parkinsonsnebraska.org.

We're learning more every day about how to fight this disease and you can help.

Donation and volunteer opportunities are available at parkinsonsnebraska.org.

And if you'd like to share this program or watch it again, you can find it at NebraskaPublicMedia.org, along with links to all all of the resources we've mentioned.

If you or a loved one is living with Parkinson's, please remember you're not alone.

Thank you for watching.

(gentle music) NARR: Parkinson's Nebraska is dedicated to improving the quality of life for people living with Parkinson's and their families.

Started by a Nebraskan and focused on Nebraskans.

We serve the entire state, whether you're newly diagnosed or you've lived with Parkinson's for years, Parkinson's Nebraska can help connect you to therapists, support groups and classes in your area.

You'll find educational materials and links to online resources on our website, Parkinsonsnebraska.org.