Announcer: The views an opinions expressed in listening are those of the hos of the program and its guests.

They do not necessarily reflect the views or opinions of WGTE public media.

Keith: How do people cope with chronic illness and conditions?

How and where do they find hope?

Both personal and scientific?

How do they find the courage to persevere?

We focus on just one chronic medical condition in this program.

Parkinson's is a progressiv and currently incurable bundle of neurological misfires, commonly dubbed not quite correctly, a disease.

Doctor Isaac Goldzser is on the staff.

The Henry Ford Medical Center in Detroit and neurologist and both researcher and clinician doctor who specializes in movement disorders and Parkinson's.

He is a part of a new generation of medical scientists who are helping us to better understand Parkinson's, its complexity, and how to cope with it.

Dr Goldzser: Parkinson's is probably the most complicated brain disease, maybe one of the most complicated diseases, because it's not just one disease.

What we're learnin is that there are many pathways to this syndrome we call Parkinson's, but that there is possibly no Parkinson's disease, or even Doctor Parkinson, when he first described it in 1817, said that the six people that he was characterizing on the street all had different features.

One had a tremor.

One was not walking properly.

Another one was stiff and rigid.

Keith: Right.

Dr Goldzser: We've been trying to get it into one bucket to try to make it a disease, but this is really a syndrome and that's what makes it so complex.

Ultimately what we have that we can say confidently is there's a set of clinical features, findings in an exam room, things that you tell me or that I can see on your examination.

That fit with this syndrome of parkinsonism.

There's a set of brain changes which we expect to find which are typically a loss of dopaminergic neurons.

And a response to the medication.

It's the fastest growin neurologic disease in the world.

We have almost 20 million people worldwide.

Keith: And why is that.

Dr Goldzser: Why is it growing so fast.

Because as we there's kind of three main reasons.

Number one is modernization.

That as we get more GDP growth in countries all over the world, we use more chemicals.

Number two, which is fascinating, brought up by Ray Dorsey, Boss Bloom and Michael Okun in their book Ending Parkinson's, and also in the pape with a similar title from 2018.

They mentioned that people stopped smoking, but smokers have a 40% reduced risk of Parkinson's disease, and that as the, popularity of cigarets has gone down, Parkinson's has gone up.

Keith: Oh.

That's incredible.

Dr Goldzser: And then the third.

Yeah.

Then the third.

Of course, we don't recommend anybody smokes, but it's just it does make you wonder what kind of neuroprotective effect this nicotine must have.

If it is directly linked.

We'll, we'll find out possibly through animal experiments or similar.

But then the the third reason that it's going up so fast is just pure demographics that, aging population and that Parkinson's is a disease of aging.

I think that's so important.

You know, people want to make this into a genetic problem.

It's epigenetic.

It's environmental.

You know, 10% genetic does not make a genetic disease.

And no matter how much we want to tell that story, we don't have cures based on genes yet.

So we have to do prevention.

We have to do, cleanup.

We have to do the things that make sense from an environmental standpoint to prevent this wave, which is coming.

Keith: Al is a scientist.

He has approached his own diagnosis and strategy for living with Parkinson's.

As a scientist.

So now your background is in science?

Yes.

You're a physicist.

Al: Right.

I spent several years at the University of Toledo.

I came here kind of mid-career from Kansas State University.

I came here to do work in solar energy.

So.

Keith: So, when Parkinson's came into your life, you did you approach it as a scientist?

Would you.

Al: Say?

Well, yes.

I think when I first received the official diagnosis from the neurologist, he propose that he had a research program.

It was testing some new medication.

He asked if I was interested, and I say I very much would be interested in participating in a double blind study of a new medication.

And how long ago was that?

So that was about three years ago.

Well, for four years.

So I received the diagnosis about four years ago.

So it was a couple months later.

I was accepted into the program.

Keith: Chri and Helen were together dancing when he first noticed symptoms of Parkinson's.

He was bewildere and at first kept it to himself.

You were telling me earlier about when you first got kind of the the wake up call this disease, how when you first knew something was wrong.

Helen: At the Christmas party.

Oh.

Chris: Well, I was scared a little bit.

I didn't know what was happening to me.

I just couldn't think of, yo know, I'm always in good shape.

Keith: And you were a good dancer and you enjoyed dancing and you were on the dance floor.

Chris: And I walked out there and she come put her arms around me and I couldn't lif my leg up, couldn't get going.

Then you know you try to like I get pull the chair back to get out.

I have to do like I had to look at my leg and tell it to move because it wouldn't move on its own.

It was it was very strange.

Helen: Yeah.

So that's called freezing and Parkinson's.

Yeah.

No, that.

Chris: Yeah, I learned I learned a lot of new stuff.

The Parkinson's for sure.

Helen: I mean, I didn't realize that there was anything wrong at the Christmas party when we were there, and we were dancing.

And, he really didn't tell me what was going on.

I think that was one of the hardest things is a spouse to tell the other person.

I think there is something wrong.

I think I need to check on that.

He had a, pretty bad tremor in his right hand initially, but that has all subside with the medication that he's.

Keith: On and the medications have to be constantly.

Chris: Addressed.

Oh, yeah.

Helen: Unfortunately they do.

So yeah.

Keith: And it seems to manifest differently in each person.

Helen: Everyone is different.

Chris: There are a lot o people have Parkinson's disease.

You just don't know.

Yeah.

Yeah.

And, you know, we kno we have some friends that are, you know, they shake quite a bit and and then they can't get rid of it.

They try different drugs and stuff, but it's just not helpful.

Yeah.

And I, you know, I feel sorry for.

Keith: Him, but you both seem very upbeat and hopeful.

Chris: Oh, yeah.

I mean, yeah, every day you get a smile on my face.

Keith: And keep plugging.

Chris: Yeah.

Keep taking my medicine.

Helen: Yeah.

Keith: People really understan about this disease a certainly a lot more than they used to because of Michael J. Helen: But, you know, there are so many people in Northeast Ohio that we have met that have Parkinson's.

It's like unbelievable the number of people out there that have this.

Keith: You think it's mor people or just more awareness?

Helen: Probably more awareness.

It has now that, you know, that we're dealing with that.

So we're aware of that.

Al: So the Parkinson's community is reall there's a very strong community.

That's part of how I got involved in the fundraising that got me this year.

And, and so there's it's it's really.

And of course, we hear abou people, famous people that have, had Parkinson's and had Parkinson's for a long time and survived.

And of course, medication keep getting better and better too.

Yeah.

Keith: So is there any research that you're particularly intereste in, are you that gives you hope?

Al: Stem cell research that's going on that looks looks very encouraging.

It's going to be a number of years off.

If it is planned, if it turns out to be valid.

It's going to be a number of years before it's available, right.

Keith So the key to really living with this thing and being positive, what would you say it is.

Chris: Working hard.

Having a. Wonderful wife who helps me.

I'm pretty happy now.

Keith: That's great.

Chris: I don't think too much about the Parkinson's.

Helen: You got it.

1... 2... 3... 4... 5.... 6... 7... 8... 9... 10... Keith: Knockout Parkinson's is a program based on the proposition that movement exertion, specifically boxing moves, can help Parkinson's patients in multiple ways.

Chris is the knockout Parkinson's coach.

Keith: So, Chris, what's what's happening here?

Chris: So what's happening here is knockout.

Parkinson's is a group tha we put on for kind of all ages.

It's anybody who is kind of suffering from Parkinson's disease has an opportunity to come in here and move their body and make them brain connections that might be severed or got are not severed, but a little bit intertwined.

We allow them to walk around the bag.

Some of them have better connections than others.

We like to keep them kind of set, but as you look back here, they're constantly moving around the bags and getting their feet underneath them.

We just want them to have a good base so that when they throw that punch, they're not off balance and they fall over.

So some people are better than.

Keith: Others and how about breathing?

How important is that?

Chris: Breathing is very important as well because as that body start getting going, even with normal, normal able bodies, as we get out of rhythm and the main thing is staying in rhythm, right?

So breathing and counting allows them to stay in rhythm with their punches and just make those smooth connections that they can take off throughout their entire daily, daily life.

Keith: Okay.

And how did you get interested in this.

Chris: So interest in this.

So I work at fitness for all.

It's a performance training gym.

And we we built this boxing place and then they asked me if I would want to do a Parkinson's class in that Bowling green where I studied exercise science.

I worked a lot with cerebral pals and as well as Parkinson's.

Ms.. So just hearing that we have a class available, I wanted to get my foot in the door and I wanted to come in and work with these individuals.

Yeah.

It's wonderful.

I get just as much out of this class as they do.

You know, it warms my heart to come her every every Monday and Friday.

And the change Monday.

Friday.

Yep.

Every Monday and Friday they're here.

Keith: I wanted to ask you about changes like, I don't kno if I understand this correctly, but there isn't a lot of hard evidence of what physical action does for Parkinson's people.

But everybody involved on my gosh says they.

Chris: Don't make a difference.

Exactly.

Yep.

So I like to go off not just scientific evidence, but off interacting with the people that are doing the classes because they'll tell you exactly how they're feeling and how this is affecting them and changing them for the better, because I like to talk to them at the end of classe to see if they're enjoying it.

If there's anything I can put in there that makes the feel more involved in the class.

Some people just stay in the corner and they hit their bags, but I love to go in and interact with them and talk to them and just gaug how they're enjoying the classes and what they'r getting out of it.

Keith: Right.

We talked to Chris and Al, and they talked about the community that sort of does.

Chris: Oh my gosh.

Yeah.

So I started this class with six people.

Wow.

And now look at it I. Keith: Have to add another class.

Chris: No.

Have to add another class.

Yeah.

Maybe a Wednesday class Keith: Yeah.

Chris: Definitely.

Keith: Doctor Beth is a professor of occupational therapy at the University of Toledo.

For a decade she has supervised the clinical research of her students on the knockout program.

She has seen and learned much.

Have you had a longstanding interest in neurological disorders?

Dr Hatkevich: Yes.

I think, you know, growing up knowing I had grandparents, that on had, two of them had, strokes.

And I was always very curious.

And I wanted to always do something to help people.

And then, students would come to me and they wanted to know more about Parkinson's.

And we had one particular student who, when we were introducing the capstone project, she approached me and said, you know, I'd really like to do something with Parkinson's.

And there was a physical therapist there with us at the time, and she says, you know, I heard about this boxing program, the knockout Parkinson's program.

And so we kind of molded the two together.

So that's been something that I've helped the students with in a community base setting for the last ten years.

Keith: And how many students are involved?

Dr Hatkevich: We have I have two students that are coordinators.

Then they have it's just depends how many.

Sometimes we have five students that want to volunteer.

They go through a training.

A lot of times when they do go to volunteer, they want to work with those same participants.

I think they learn a lot.

They learn a lot because at the same time, they may be taking neurology.

And so they're learning about Parkinson's and the different things, and they're learning how to do the tests actively.

And so they're actively learning.

But they do, form this immense bond that they depend on them being there.

I will tell you the individuals with Parkinson's are the nicest people to work with, and they appreciate us.

So I think that's really draws the students in to help them more.

Keith: Does that have to do with being i a vulnerable place in life or.

Dr Hatkevich: I don't know, I think they feel like we're helping them.

We're giving them a gift.

We're there to support them.

I'm not sure where it comes from, but they're just very kind.

Keith: So what happens to patients when they get to the point when they really can't do it anymore?

Dr Hatkevich: We haven't had you know, I think again it's a personal choice for them.

We don't discharge them from the program.

They come as long as they want.

This is a community based program where they hear about the program.

We always ask them.

We always ask to do the intake because we want to make sure that they don't have any heart conditions.

Maybe they deep brain stimulation.

We want to make sure tha if they need to wear a gate belt and they're not boxing each other, they're boxing a heavy bag.

So they, you know, they take turns, doing a routine, each day they partner up in the gym.

Keith: And have you learn things that have surprised you in the course of this program.

Dr Hatkevich: I think the biggest take home for me was to watch the community of people with Parkinson's disease, and to know that Parkinson's can look like many, many different ways.

Some people you can't even tel they have Parkinson's disease.

Other people that I meet or that I encounter at the, the, the boxing club they'll come in in wheelchairs.

So there's just a such a difference and nobody can be put into one box.

You know, the thing about Parkinson's disease, you can either die fro Parkinson's or with Parkinson's.

It's kind of like cancer.

And but I learned that clients are participants in the program.

They would come to me and say, you know, I feel stronger, I feel more coordinated.

I'm able to do more for myself at home.

And that's you know, that's a key.

You know, when we maybe reassess them at one point, we see a little bit of change, but not a huge change.

So I want to some time physically, but I think also to emotionally, but I think with the supports they have from the clu and with the other participants in the club, it really gives them a boost.

It's like they have this community and they have the students and they have the coaches, and they have people that believe in the and they believe in themselves and they just get really motivated.

Keith So the benefit is physical and.

Dr Hatkevich: And psychosocial.

Keith: Psychological and spiritual almost.

And also.

D Hatkevich: Social psychosocial.

Yeah.

Yeah.

Well amazing.

Yeah I had two grandma say my grandpa had a hard time where I first was introduced to them, got to know more about it.

And it' just such a really broad field that has its hands in a lot of different.

Keith: Natalie and Alayna are two UT graduate students in occupational therapy working under the supervision of Doctor Beth.

There are monitoring the knockout program, documentin the journey of its participants and also volunteering.

They are hands on with the boxers.

Did you get interested in this work because of Parkinson's or a personal connection to Parkinson's?

Yeah.

Natalie: So, my grandpa had Parkinson's disease, so that's kind of ho I got introduced to what it was.

And then the more I learned about it, the more I'm like, wow, this i just a really cool profession.

And they like, it's really focused on the client and really holistic.

So I really enjoy that, like 1 to 1 interaction that you get with them.

Keith: So what do you think boxing per se.

This kind of boxing kind of modified boxing.

What does it do for Parkinson's patients?

Is it mental or physical?

Both.

Natalie: It's pretty much yeah, it's all of it.

So it keeps you moving.

Some movements, like one of the best things you can do to help delay like delay progression, but then also like they're counting up and down, they're having to go back and forth between hands.

So it's a lot of thinking.

It challenges the both physically and cognitively.

So it it's a workout.

And I even struggle sometimes with the counting we were counting earlier.

I like try to count backwards.

I was like I kept missing him up.

I'm like I'm sorry.

What this is kind of doing is kind of bringing my research to life.

So I get to kind of see them in action and then do research on kind of their takeaways, takeaway.

Alayna So it's kind of nice to kind of see like how it progresses and like what they're doing in class and how it can kind of relay over, the different themes that I'm kind of coding for are like their overall perceptions of exercise and kind of how it impacts them at home.

So their energy levels levels, their motivation, their ability to do things at home.

Keith: So here we go.

Yeah.

Oh, oh that's so.

Alayna: This is the machine gun.

So they have to do as fast as they can.

And Thoma and he's been coming for a year.

Keith This one's called machine gun.

Alayna: Yes okay.

So each team does 30s.

So we'll do 30s over here.

And then we'll chee on the second half of the time.

Keith: Okay.

Alayna: You're going seven seconds.

Count that.

Almost there.

Oh three.

Two one.

Nice job Tom.

Keith: Nice job.

Have you found any gaps, any kind of surprises between your study and what you find when you come here?

Alayna: Not necessarily, but I think I am biased because I have family members with Parkinson's.

Because I know there are good days and bad days.

It's not every day is going to be the same as yesterday.

So that's mean, that's a tricky question.

That's a loaded question.

Because I feel lik what I'm reading in my research is that there's multiple different types of exercises that they do.

And I feel like the biggest takeaway with this program, specifically and with these people specifically, is the sense of community tha really brings people together.

As far as, like motor effects, like that' what I'm reading in my research.

But when I step foot in here, I just like see a group of people, like, it's not necessarily, oh, we're here to exercise, let's say are and it's beneficial.

But but my biggest takeaway always makes me feel better is that I help them today.

And like they helped each other today and just like watching like how they offic after exercise, like it's just they're here for each other.

Yeah.

And that's kind of what I get really excited.

No, that's not necessarily what I'm studying ers so yeah that's like my biggest takeaway.

And maybe that's for once you get to you because it feels like it's bringing me closer to my grandpa.

Keith: When Michael J. Fox was first diagnosed with Parkinson's, his doctor said, you don't beat this.

Patients need hope.

All patients fighting chronic and progressive conditions need hope.

And I. Dr Goldzser: There is a lot of, a lot out there in terms of resources and and support.

And so Michael J. Fox Foundation has been huge in terms of funding.

They have this PMI study, which is massive, I think, for identifying who's going to get the disease and identifying how we're going to determine who we need to study.

You know, it goes back to that, that bucket of like, we might never get a cure as long as everybody's in the bucket and we might need to just come up with a way to separate out.

But the only way to do that is to study people over years and years.

And he's got, you know, he has the money and he's he's put it up.

And and so kudos for that.

There's people like Kirk Gibson in Detroit who've been huge.

You just opened up a massive center in Farmington Hills just for people with Parkinson's.

And that's huge.

All of those things matter so much.

I think, to people that awareness, just knowing, you know, hey, I'm not in this alone, being able to go through that.

So the support I think has been huge.

The, the research is exciting.

I think we have good treatments for symptoms.

You know, symptomatic therapy is is good, doesn't come for free.

There's potential side effects.

But I think we're pretty good at knowing how to deal with those.

And there's advanced therapies.

You know I've been excited about some of the advanced therapies, especially this new pump.

There's a vial of pump that doesn't go into the stomach anymore.

It's just on the skin.

And so this is kind of like the idea that we've been using in diabetes management where, eventually you could have a closed loop system where you tremor increases.

It's picked up over Bluetooth by a pump.

The pump increases the amount of dopamin that's released into your skin.

The tremor reduces, and the the dopamine release is reduced.

Certainly for you know, we want convenience.

We want people not to feel like they're chained to a pill bottle.

There's advanced therapies, other advanced therapies, you know, focused ultrasound, deep brain stimulation.

These, have been life changing for people, no question, especially for tremor, I think for for tremor, we're doing pretty well.

For freezing of gait.

Not so good.

Okay.

You know, there's, there's obstacles, but I think overall, there's a lot of hope.

There's a lot of reasons to be positive, optimistic, even for people that have had disease for decades.

Keith: Science offers hope.

So do dedicated caregivers.

So their loved ones.

But we learned that one other thing offers hope.

Community.

The boxer's and their significant others are bound by suffering, but also bound to each other.

They look forward to their time together with the coach, volunteers and the heavy bag.

They also look forward to simply being together and they are a community of fellow sufferers, but also fighters and friends, Michae J Fox has said with gratitude.

Optimism is sustainable.

Announcer: The views and opinions expressed in Listening with Keith Burris are those of the hos of the program and its guests.

They do not necessarily reflect the view or opinions of WG Public Media.

Listening with Keith Burris is supported in part by the Toledo Clinic and the Parkinsons Foundation of northwest Ohio.

Also by viewers like you.

Thank you.