(dramatic music) (dramatic music continues) - [Announcer] Support for "Arkansas Week" provided by the Arkansas Democrat Gazette, The Arkansas Times, and Little Rock Public Radio.

- Hi everybody, I'm Donna Terrell for "Arkansas Week".

Parkinson's disease is a progressive disorder that affects the nervous system, causing uncontrollable movements, unfortunately, there is no cure.

It came as a disbelief for Olympian and retired professional runner, Frank O'Mara, who was diagnosed with early onset Parkinson's disease at the age of 48, that was in 2009.

It has been a journey of challenges, and as you saw there, he is with us today to share his uplifting story which is documented in his recent book, "Bend Don't Break A Memoir of Endurance".

Frank O'Mara, thank you so much for being with us.

- Thanks for having me Donna.

- You know, I'm gonna get into the book, but I just want to reintroduce you to Arkansan's who as some of them remember, and for some, it's all new to them, but you are a former Razorback in track and field.

That was during what years?

- I don't want to admit that to you now, but it was 1980's, '83, I was the first NTAA champion for the John McDonald, there was one before me, (Frank speaking indistinctly) in 1940 for NCA title, but I won the first one at John McDonald 1983.

- That's pretty amazing.

And you're also, I mean, you have many accolades, but, one of them being three time Olympian.

- This is the season for the Olympics, and I went to '84, '88, and Barcelona.

And, I enjoyed it tremendously, it was comes a contribution I wanted to make.

- Yeah, yeah, pretty amazing.

And, we all remember Alltell, in fact, I remember Frank, when I moved here 20 years ago, Alltell was still in its heyday, it was before it was bought by Verizon.

But Alltell is you know a lotta people work there, and you were one of the executives to help lead that company during its heyday.

- Well it was, (Frank speaking indistinctly) we were the fifth largest wireless carrier in United States with the largest geographic network.

Got more (Frank speaking indistinctly) than anybody else.

And it was a great place to work.

About the comradeship, and the spirit of the place.

- Yeah, beautiful, there are lots of memories of Alltell.

And people should know that you have degrees from the U of A, in engineering, business, and law, very very educated, smart, and competitive man you are.

- That's how I kept my visa to stay in the country when I was running, I stayed in school.

- And we have to point out, you are from Ireland, you came here from Ireland to go to U of A and become a Razorback.

- That's precisely right, I came, three Irish guys came the same year.

And, we thrived, it was a wonderful place for us.

- You sure did thrive, and you're still here, and we appreciate that.

I wanna get into this book, but first let's just talk about the diagnosis.

You're now 48-years-old, you lose your job with Alltell because it closed, because it was bought and sold.

And then a week later you get a diagnosis I'm sure you never dreamed you would get.

- I tried to avoid it for a long time, I had some problem with my walking and my running, and I did physio therapy, massage therapy, chiropractic care, all the (Frank speaking indistinctly) seeing a neurologist.

And dedicate about (Frank speaking indistinctly) team.

- [Donna] Doctor Archer.

- And doctor Dhall.

And, I regret ever having to meet a neurologist, but I met many, and they're all great people, but I put it off as long as I could.

And my first (Frank speaking indistinctly) was talking about spinal comradeship.

But the truth came out that I had Parkinson's.

- Yeah, you know what interest me when I was reading the book was when you talked about specifically Doctor Archer and going to see him.

And, you know you just figure that maybe it was a running injury because you've had those before, so many times before.

But I think deep down you knew something was wrong.

What was really interesting in this book was the minute you walked in the door, doctor Archer really was able to tell what was wrong with you, he knew based on how you were walking, your poses, all of that, that it was likely Parkinson's.

- There are some tests you do where you move the hand to speech, keep the speed up, and making fists, and finger tapping like this, but he knew from the way I turn around, the way I sat, slowness of movement of, it was very obvious to a trained eye.

- You know, it's interesting too, you said that when you went home, I mean you were still in denial, but there was a part of you, according to your book, there was a part of you that realized that well if it isn't Parkinson's disease then it's something, and it could be much worse than that.

- There are moment, mine is a life sentence I like to say, no chance of parole.

All things as you know well can be a death sentence.

So, I don't have the worst of it, but I do have to cope with it as best I can.

- And that's where you said in this book, and you just said it, "While Parkinson's diagnosis isn't a death sentence, "it is a life sentence with no chance of parole."

- It's the fastest growing neuro degenerative disease in the world, and 40 different symptoms.

Mine are cramping, and rigidity, speech obviously is a problem for me, but others have tremors, all kinds of problems.

- And you know and right now is probably a good time to talk about the deep brain stimulation, because we see video of you before you had that, and the uncontrollable movements.

And now as I sit here and I talk to you, it seems to me you have much more control.

- Yeah, the experiment has been around for a while, scares off most people, because it's an extreme response.

They drill two holes in your head and put electrodes deep into your brain, they attach it to an impulse generator, and you run pulses through your brain at all times.

And, your movements and motor specialist can change the frequency, change the amplitude.

- How long will that last?

Is that indefinite, or do you have to get that procedure again?

- I don't know, to be truthful with you.

I tend to ignore things that don't suit me, you know, I learned that in boarding school, I could compartmentalize.

I'll worry about that tomorrow.

- Compartmentalize, that's in your book, and you learn that though in boarding school how to compartmentalize.

- Well it's about discipline, and setting aside different times, and day for different things.

And, you have to learn that in boarding school to survive.

But it's also in Irish nature.

I reference Scarlett O'Hara, an Irish last name, O'Hara, and she said she'll worry about that tomorrow.

That's why our, I'll wait tomorrow.

- Worry about that tomorrow.

You know, an amazing life though, an amazing life, even with Parkinson's disease.

And I credit, and in the book when you talk about your travels to Antarctic and your journey there, it's absolutely amazing to see you out there.

But I go back to when you were a track star, and being an Olympian, and that competitive spirit of yours.

What made you want to to Antarctic?

- Well, I was at a pub when I was a young guy who had expedition with Shackleton, called the South Pole.

My father went there when I was about 15.

I was fascinated all the pictures with the like hoods up, and the cold.

And so I always wanted to go there.

And we (Frank speaking indistinctly) you need goals, you need objectives.

- Goals and objectives, yes.

- And without those, I would fall apart.

- Okay.

- So, go and ask me something, not everybody can or will do.

And, places we're going to, it's hard to get to.

(Donna laughs) - It is very hard to get there.

That's amazing, yeah, and you said here, "I have always been fascinated with polar exploration "ever since my childhood."

So that's pretty amazing.

We'll talk a little bit more about that.

We're gonna take a bit of a break, and we'll be right back.

(dramatic music) We continue our conversation on Parkinson's with Frank O'Mara, and we're joined now by doctor Rohit Dhall, Chair of Neurology and Director of the Parkinson's Foundation Comprehensive Care Center at the University of Arkansas For Medical Sciences.

Thank you so much for joining us in this conversation.

Are you seeing an increasing number of people with Parkinson's disease, and especially like in Frank's case, at a young age?

Because, from everything I've read, usually if it's going to happen it's after 60.

- Parkinson's, the incidence of Parkinson's, new diagnosis of Parkinson's appears to be increasing across, not just in the United States, but also internationally.

The proportion of people who are young at the time of diagnosis has held constant, it's about 5% of people who are diagnosed, before the age of 50.

But the total incidence is increasing, both in young people and in older people, and we think that part of it might be better recognition, better awareness about the disease.

Part of it might be that there is, there are environmental factors that are kind of working their way through the demographics that we have.

And part is the aging of the overall population.

- You know, I wanna talk about the book again, and talk about Frank, you made a dedication of this book, you said, "I wish I had never met a single neurologist "or neuro surgeon," no offense to you doctor Dhall, but, "14 years into this saga "I have the contact details from many.

"This book is dedicated to all of them."

And you mention several doctors at UAMS, including doctor Dhall, and then you mention some other doctors.

But, what really struck me was when you said, "Without your care, "many of us would not have the tools to cope."

So, are we talking both physically and mentally?

- When I say, (Frank speaking indistinctly) doctor Dhall correct me, but I think that Parkinson's had more improvement in its treatment of 30 years still taken the same (Frank speaking indistinctly).

But also, get my voice sorted out, but also, save me Donna.

- I am, and hold that thought Frank.

So what am I seeing here when he's trying to speak and tell me what he's feeling or his thoughts, what's happening here?

- [Frank] It's annoyed.

- I think, yeah, so you know this arrest of being able to get words out, this speech arrest, and sometimes we see similar things with walking where people are trying to walk and or turn and get stopped up in their spot.

These are features of freezing of speech, freezing of walking, that are incredibly distressing for many of my patients.

And it is, for somebody as eloquent as mister O'Mara, I know he has an exact sequence of what he wants to get out.

- And that has to be frustrating, that has to be frustrating for any patient.

I know Frank has had the deep brain stimulation, how has that helped him?

And how does that help people in general with Parkinson's?

- So, I don't know if I have your permission to share your.

- You do, you do.

(Rohit laughs) - Thank you.

I remember when I initially met mister O'Mara, he had a lot of what are called motor fluctuations, ups and downs and control of his Parkinson symptoms where in the down times.

And you shared some videos I remember, and you shared this incredible chart of how your day was like.

You were going through this, essentially like a Yo yo of when things are working well you have better control of your movements, but really problematic dyskinesia or abnormal involuntary movements.

And then when your meds were off, or in the mornings before you started your day, you had terrible dystonia and spasms that essentially held all of your body in the grip of dystonia.

So, I remember those days.

You do.

- Me too.

- You share parts of those in your book.

So, really short amounts of good on time where you were able to do things and you try to make the best of it.

There was this sense of pressure I think, you still feel that sense of pressure to make sure that you're doing well with the amount of good on time that you have.

- You (Donna speaking indistinctly) is up, medicine is absorbed and it runs out, in the off period, an doff periods were really hard.

(Frank speaking indistinctly) Do what you can while you can.

- Do what you can while you can.

What should people look for?

Because I'm sure, watching this program, a lot of people would wonder, well can this happen to me?

Is it hereditary?

Is there something in the diet?

Is there a way to prevent it?

What can you tell folks in terms of the likelihood of people getting it and what they can do?

- Parkinson's, the risk of it goes up with age.

So, in some ways, if you're lucky and survive into your 60's, the risk of having Parkinson's when you're about 60 years of age is about 1%.

If yo live into your 80's, the risk goes up to four or 5%.

So, the older you are, the greater the risk.

There are hereditary factors.

- More men than women?

- Men have a higher risk of developing Parkinson's.

- [Donna] Okay.

- Certain, there are some racial features as well.

- [Donna] When say racial, white, black, what?

- White's have a higher risk than blacks, Asian's probably, again, depending on where they're from may have their certain pockets that have a higher risk.

And we don't fully understand some of those risks.

- Okay.

- Genetic factors that affect certain populations and not the others.

- And I know Frank told me that he didn't have a family history.

He was 48-years-old when he was diagnosed.

Let's talk a little bit about the foundation The Comprehensive Care Center over at UAMS, you are the head of that from what I understand.

So what exactly, what are the benefits of that foundation?

- So, we are one of the centers for excellence for managing Parkinson's, there are about 40 centers in the country that are designated by the Parkinson's Foundation to both recognize the excellence of clinical care, research, and education outreach and support that is happening at these centers.

We at the university take care about a third of the population in the state with Parkinson's, we estimate there's about 5,000 or so people with Parkinson's living in Arkansas, we take care of about 1,500 of them.

In addition, we have support and education outreach services that reach the entire state, whether you're a patient off the UMS clinic or not, you can still utilize the education outreach and support services.

When we brought the designation off the Parkinson's Foundation Comprehensive Care Center, it freed up some resources for programs like art for Parkinson's, music in neurodegenerative disorders, group exercise-- - Are all those things important though in terms of therapy, when you talk about art?

And that just reminded me of something, you looked at me Frank like, oh wait a minute, she needs to ask me about this.

You have done artwork, beautiful artwork.

- I don't know if it's beautiful or not, (Frank laughs) but (Frank speaking indistinctly) Parkinson's inside your own head a lot at the time.

So the company activity, it really is.

- And I-- - If you end up at the home by yourself all day, you don't talk, so your voice gets worse, you don't walk so your balance gets worse, and you don't stimulate your brain with activities, so it's crucial.

- So, did you do art before Parkinson's or the art came after Parkinson's?

- Art came after Parkinson's.

- Okay, okay.

- I was a (Frank speaking indistinctly) by training, so I'm used to drawing.

But there aren't, bunch of color, hoping the light's coming from the right direction.

(Donna laughs) - So, there is something to be said for art therapy with Parkinson's disease.

- There is something to be said.

You put it really eloquently, there's social deconditioning, there's cognitive deconditioning that goes on.

If you have Parkinson's you want to be in a safe space with others where you can express yourself.

People talk about not being able to express yourself physically, and so what we are trying to do is highlight abilities rather than the disability that Parkinson's brings.

- I love that.

You know, I would be remiss if I didn't ask you about warning signs for Parkinson's.

You know, after I was reading Frank's book, as we discussed, "Bend Don't Break A Memoir of Endurance", he describes very well, some of the symptoms, and what was happening when he was running.

And at first, he had problems, he recognized the problems during a run, and then eventually he would recognize the problems as you would walk.

So, explain, are the symptoms, do they vary with different people, or are they pretty much the same?

What should we look for?

- So, the premonitory symptoms they're kinda before the motor symptoms of Parkinson's, people may have all sorts of things, they may have issues with acting out their dreams, they may have issues with a reduced sense of smell, constipation-- - Acting out their dreams, I'm not understanding you.

- So, god gave us this ability to paralyze our body, even when we area in a dream state.

- [Donna] Okay.

- And that mechanism, well god, or our brains, that mechanism does not work very well in degenerate disorders that are caused by a mis folded protein called alpha sinucleína, where the body is not paralyzed in a dream state, and so people act their dreams out.

That may happen years to decades before the motor symptoms of Parkinson's, slowness, stiffness, tremor, walking changes.

The common motor symptoms of Parkinson's though, are either slowness or stiffness of one side of the body, with or without a tremor.

- Okay, okay, so when we see people who I noticed some people as they get older, they shake a lot, is that an early sign?

- So, shaking or tremor can happen because of a number of different reasons.

- [Donna] Okay.

- Often, there's a condition called essential tremor, where there's tremor with the use of the hands.

In Parkinson's, tremor often is at rest as well as with the use of the hands.

- Okay, what about research?

Where have we come with that?

Are we making inroads?

We always talk about different diseases, and you know fundraisers and things like that, which I wanna talk with you a little bit too Frank about that before we end this segment.

But, what's happening in the way of research, are there any breakthroughs?

- So, research into Parkinson's, the work towards a cure for Parkinson's is my personal passion, that's what I am excited about.

We've made a tremendous amount of inroads into understanding the biology of Parkinson's.

We know many of the genetic risk factors that are informing whether somebody's gonna have Parkinson's or not.

We understand the pathology and the spread of it in the brain, so people with Parkinson's.

And, that is translating into finding new medicines and clinical trials.

I've been working on ways to slow Parkinson's progression, I say I, we are the group of researchers looking at ways to slow Parkinson's progression, I've been working on this for a long time.

And, we have yet to find the first medicine that is able to slow progression.

We know exercise slows progression, but a pill, or a shot that I could give somebody that would slow Parkinson's progression.

In the time that I've been at UMS now, there are gonna be four medicines that we help develop at UMS through clinical trials that are gonna be released in the next year that I'm aware of, that are likely gonna be coming to the market for symptoms of Parkinson's.

- Is it anything that Frank would be eligible to take at this point?

- I think we are careful with medications, because, again if it's not broke let's not try and mess it up.

It's taken a lot of calibration.

- Did you hear that Frank?

If it's not broke, we're not gonna mess it up.

(Frank speaking indistinctly) - Well said Frank.

(Donna laughs) - You know Frank, I do wanna ask you, I think we have about a minute left.

There's more I mean you've gone to the Antarctic, you've journeyed that, which is amazing, but there are other things you wanna do too.

- Well I want to create a (Frank speaking indistinctly) to fundraise for Parkinson's.

More recognized.

(Frank speaking indistinctly) A few years ago.

Still working on that right now.

- Okay, I think that's great.

When you look at him, what do you think doctor Dhall?

- I'm really really humbled and proud.

I think miss O'Mara, thank you for spreading the word, thank you for what you're doing, I know it takes a tremendous amount of effort.

And, I think you're both your optimism and perseverance, we really need to take in note of that.

- And we do appreciate your being here and sharing your story with us and your wonderful book, "Bend Don't Break A Memoir of Endurance", this is a great read.

Look for this book, I'm sure you can get it online, you can get it in the bookstores, everywhere books are sold.

- Both.

- Both, okay, we will do that.

And doctor Dhall, thank you.

- Thank you, thank you for spreading the word.

- And I wanna thank you for joining us for "Arkansas Week".

I'm Donna Terrell.

(invigorating music) Make it a good week.

We'll see ya next time.

- [Announcer] Support for "Arkansas Week" provided by the Arkansas Democrat Gazette, the Arkansas Times, and Little Rock Public Radio.