[Announcer] Funding for this program made possible by Dean Engelage and Dan and Alice Stultz.

For a full list of funders, visit pdwise.com.

[clock ticking] [soft dramatic music] [Allan] The very first response I gave to my diagnosing urologist was... ♪ ♪ But I have young children.

♪ ♪ And the second thing I said was, "What am I gonna tell my parents?"

[soft dramatic music] [dramatic music] ♪ ♪ Something told me that I wasn't right.

[curtain rings sliding] [curtain rings sliding] I walked in and sat me down and he said, "You know what worries me is that I think you're in the early stages of Parkinson's disease."

I call it the 16 words that change my life.

Initially, it made me think my life was over.

I didn't know much about Parkinson's.

The little I knew, it was an old-person's disease, except for Michael J.

Fox and Muhammad Ali.

[picking guitar strings] I didn't know very many younger people who had it.

And so I assumed that my life was over.

Suffered in silence.

[picking guitar strings] Kept quiet about it for 10 months.

[picking guitar strings] My wife knew one or two close friends knew who were doctors.

And I just carried it by myself.

When the shaking palsy shook my life, agendas changed as did my quests and work.

[lighthearted music] The question of why, never crossed my mind.

Instead, I asked, "What?"

"What can I do to live well?"

What meaning can I discover?

What may I do to use Parkinson's for good?

[dramatic music] - People make choices in their lives.

♪ ♪ While the wind may blow each of us in a certain direction at certain times, Allan's always, at least in my observation, kind of got that anchor to Winward.

He's learned to live with this and to handle it with grace to help other people.

- Allan is a mentor to a lot of people.

He's got a Parkinson's posse.

- He opens his own experience up to allow others to acknowledge theirs.

♪ ♪ He's earnestly and genuinely and sincerely interested in these stories.

It's pretty amazing.

[Allan] I wanna hear about your diagnostic journey.

When did you start feeling that something was off, and how did you find out it was Parkinson's?

- I'm 52 years old.

People usually think that I'm a lot younger because I'm very immature.

I was diagnosed in my 40s, but I knew from my 30s something was really wrong.

In fact, my knuckles were kind of dragging.

I was slower.

I would pick up my violin to play and I couldn't.

The vibrato kind of looks like this sort of like wobbly with the fingertips, and I couldn't, my hand was not responding.

So I went to my doctor and he told me that he thought maybe, well, a doctor, and he wrote in my permanent medical record, he thought I was an addict of something like a drug.

And I realized I must have written on my en entrance form something about taking Ativan before I got to the-- because I was afraid that he was gonna put electrodes in my fingertips.

I didn't know what neurologists did.

I had no concept of neurology.

It wasn't even on my radar.

I will say, I do feel like women and, in particular, people of color, from what I've heard, are sort of disenfranchised in this way.

We, they don't really listen.

And I don't know why.

I was just this hysterical woman.

They kept giving me antidepressants and anti-anxiety meds for years.

I was a new mother, we thought it was postpartum depression for a while.

Then I thought I had a neck injury 'cause I used to do boxing and specifically at the UFC gym in the cage, I was literally fighting in the cage.

Not like you see people do now where they're beating each other up, but just training.

So I thought a neck injury, he kept saying my left side was slower.

My trainer would say, "Kennedy, your left side's down."

And I couldn't figure out why I kept getting hit on the left side.

So finally, my naturopath said, "I think something's neurologic.

I'm sorry, please go to a neurologic chiropractor," which is the next step he can figure out.

But I went back to my naturopath and he said, "I think that it's really bad.

Go see a neurologist now."

And he cried because he is a friend of mine.

He knew something was wrong, my optometrist was also one of the first people to notice.

Something in the muscles in the back of the eye were twitchy.

And he's, she was like, no, something's wrong.

But we had no idea, in fact, the other options were MS, ALS, MSA, ataxia.

I hit the jackpot.

I have moments where I can move.

And then moments where I'm stuck like I am now.

I'm a little off.

[gentle music] [Allan] When I was in graduate school, I read a book by a philosopher who talked about there's suffering and there's suffering in suffering.

Right, and suffering in suffering is among other things, when you are experiencing pain without meaning.

And that's the worst kind of pain, right.

For me, it was trying to find meaning that made a difference.

And, for me, meaning has always, as long as I can remember, been associated with trying to make a contribution to other people's lives, you know.

Why don't we just start by asking you to tell us who you are and what you do.

[gentle music] ♪ ♪ - Yeah, if you wanna stay on the lane is we're gonna go-- - That lane?

- Straight.

Yeah.

The reason I went to medical school was to become a neurologist.

- Right.

- And my passion was movement disorders and Parkinson's.

So I never knew it was gonna take such a personal journey, but I remember when I first got my diagnosis sitting here in my parking lot and just sitting there in my car crying, going like, "What am I gonna do with my life?"

You know, and how am I gonna see my patients today?

You know, and then you know, it, it was just really hard, because at first, I didn't know if they were gonna accept me, you know, that I had the illness or how they were gonna react.

And actually, the biggest problem came from the boards because then they were like, "Well, are you mentally capable of taking patients?"

So we went through this whole ordeal about my capabilities as a doctor.

[gentle music] Hey, my lovey.

I'm glad you came.

- Oh, yeah, happy birthday.

- Thank you, come on in, come on in.

You guys serve yourselves, there's plenty.

- I'm cutting the line.

[Maria] Do you guys want lettuce?

- I'm still trying to decide.

- Not lettuce, but mayonnaise and mustard.

- I'm fine, thank you.

- And they gave me the sediment, I took and it was like, all the pain, like all the muscle just went back to like normal.

I was like, "Oh, my God."

[Allan] It's a miracle drug-- - Yeah.

- But you suffered for years.

- I suffered for like almost three years because, because of the pain.

Because, um, 15 years ago, you know, pain was not really a common factor in early Parkinson's.

I mean, it occurs in there later.

And I treat lots of patients with pain and they know in their middle to end stages.

But we never really thought of it as a beginning symptom.

[Allan] Right.

- And so that, as a doctor and a specialist, that threw me obviously, 'cause I wasn't special, I was like, "Why do I have so much pain?"

The other thing that I had was that I had vision problems.

And again, that was not something that was recognized.

And so even though I knew that I had Parkinson's symptoms, the pain and the vision problems kept me from like really getting diagnosed.

It took about three years - It did.

- to get diagnosed.

All the male doctors I was seeing, everybody kept looking at me.

"You're 36 years old, why would you have Parkinson's?"

I said, "Well, I have family history of Parkinson's, I have family history of essential tremors.

I have family history of dystonia."

So I'm more prone to have those.

Every single one of them looked at me like, "You just need to go see a psychiatrist, a psychologist and get back to work and taking care of your patients."

And these were some of the people that were trusting me as a physician.

They were referring patients to me, but somehow as a patient, they were not trusting me.

And then I kept thinking, is it because I'm a woman?

Is it because I'm Hispanic?

Is it because, you know, you go through the whole thing.

- When I was diagnosed, I didn't appreciate this as much at the time as I do now.

- Yeah.

- But the urologist who diagnosed me, he said, "Allan, you're looking at 30, 40 years with this disease."

And he said, "Something else is gonna get you."

- Yeah.

- And, you know, sort of chuckled, and I said, "Well, thank you.

I think that's meant to be comforting, you know?"

And it was, but to your point, when you get into your 70, 80s, 90s, I mean, you have other issues, right.

- Not before then.

- Right, I mean, you know, just because we have Parkinson's, as I was saying, you know, before, doesn't mean you're not gonna get strokes or cancer or diabetes disease or heart attack or whatever.

So those things may be the cause of, you know, you succumbing rather than, - Parkinson's per se.

- the general, you know, Parkinson's.

- I think it's really important, especially for people who are just diagnosed to hear that from physicians that, that Parkinson's is not a death sentence.

- No, and people, I hate that.

I hate that.

- Right.

But there's a lot of people who believe it is because they don't know a lot about the disease initially.

- Yeah, and because they think that, oh, I'm gonna die in five years or 10 years or, and really most people with Parkinson normal Parkinson's disease, if they're dying and doing really bad in five years, they don't have Parkinson's.

If they getting really bad in 10 years, they don't have Parkinson's.

Okay, so that's my point.

- I'm excited to present our first speaker.

It's been an honor.

Dr. De Leon is a world-renowned speaker and author of "Parkinson's Diva, Woman's Guide to Parkinson's Disease" and "Viviendo Mas Allá del Párkinson."

Maria's passion for women's issues extends far beyond the realm of neurology and Parkinson's.

Thank you, Dr. De Leon.

- Thank you.

[everyone clapping] Thank you, good morning, thank you.

I thought I would welcome not just Parkinson's Awareness Month, but also Fiesta Festival.

So, good to be here in Texas.

You have to take control of your disease and find ways to show your inner talents, your inner gifts, your personality, and put a spin on Parkinson's.

You know, all of you wonder like, "Well, what's next?

What am I gonna do?

How do I do this?"

Sometimes it is one step at a time, one breath at a time, one for a time, right?

[gentle music] Sometimes you feel like you want to just crawl under your bed and not come out.

And it's okay to listen to your emotions.

It's okay to cry.

It's okay to scream.

But after you scream and cry and, you know, wonder why me?

Then you have to kind of get up and say, okay, "What's next?"

What am I gonna do about this?

How am I going to make it to the next day, to the next step?

How am I going to, you know, keep this job or take care of my family?

Am I gonna be, continue being a mom, continue being a wife, a parent?

It's not easy.

It really does take a village, I've learned.

[gentle music] ♪ ♪ - It feels like a struggle.

Like I'm overcoming challenges.

Like I am struggling to be me.

Like, whether it be, and it's mostly cognitive versus physical because I can, I can adapt to the tremors.

Like if my hand's shaking, I can grab it with the left hand.

I can do a combination.

But when it's mental and I have mental fatigue, I can't get around that.

Or like I can move a chair and move, rearrange my house the one day and be perfectly fine.

Next day, I go to move a chair and be physically exhausted.

And it's like trying to manage the symptoms and get, and be functional at the same time.

It's a challenge.

- When did you discover you're an artist?

How did that sort of lead you to do the kind of artwork that you do now?

- Will you tell me your, your Parkinson's story, how you were diagnosed and what led you to that and sort of how it all began for you?

- So what happened after that?

[automated voice] The walk sign is on to cross Congress at Elizabeth.

The walk sign is on to cross Congress at Elizabeth, 17, 16, 15... [gentle music] [Allan] Yeah.

Yeah.

- That's symbolic of life with this disease.

It's, you know, it's not one thing.

Usually, it's a series of things over time that become more complicating.

But there are, there are ways that, that can actually bring good things into our lives too.

Perspectives and people and risk and courage and all that.

So thank you for helping me get to that space and just listening to you.

[Federico] Well, thank you.

[gentle music] [Allan] We know each other because we have Parkinson's disease.

And how did you learn that you have Parkinson's?

What were the things that got you to the doctor?

When was it in your, in your career?

Basketball-wise?

- Well, I was officially diagnosed I think in 2008 or 2009.

But I knew there was something wrong back 2005, 2006.

I was playing for Phoenix and I was having knee problems but my coordination was off.

I was trying to go off my, my dominant leg, which was my left and it would be very awkward.

So I went to the neurologist out there and I noticed I had this little tiny twitch in my skin.

Not in my hand, just in the skin right here.

- A little tremor.

- Yeah.

- Just in the little part of the skin.

And the neurologist told me, you know, Brian, you're in your 12th year.

You'll have all sorts of little things happening to you.

It's nothing to worry about.

- Just age.

- Just age.

[Anaya] You never get mad.

[Brian] I get mad sometimes.

when you get mad, I'm just like, okay.

And Maliah just laughs.

[laughs] - Gets under my skin, like, didn't I tell y'all not to do that?

- And Maliah, my sister-- - Yeah, right.

- My daughters imitate me when I get mad.

It makes me laugh.

- Me and Maliah.

- I, I mean it this time, dammit.

- And we just laugh with each other.

And then we talk about it later, like... - As far as I can remember in my life, my dad has had Parkinson's.

It's like, I feel like a lot of people know about like cancer and like Alzheimer's and stuff like that.

But like Parkinson's is not really a disease that a lot of people know about.

The foundation is to help people with Parkinson's live a healthy lifestyle.

Which I think is super important in like getting to see my dad help other people that are struggling with things that are similar to him.

It's like cool to see that because he gets to be a leader.

But I also think it helps him so much.

Like being able to be around people who are going through the same thing as him.

Because as much as we as his kids and like his family wanna help out and wanna be there for him, we'll never know what he's going through because we're not living with Parkinson's.

- Our first Parkinson's support group was at this assisted-living place.

So I think I was 30-something and the next youngest person was 75.

- I know, I've been there.

- And they went around the room talking about all their problems.

By the time they got halfway through, I had to leave.

I was like, damn.

- Yeah.

- Man, I gotta go through that now.

Yeah, like, no, you're at the wrong one.

But we started a support group here in Portland and it was kind of like a relief because all the answers I couldn't get from a neurologist, I was getting from other patients.

And I got a chance to really see how many faces this disease has.

Just a heavy weight.

- Yeah, that's a big one, bigger that what he gave me.

- I think a lot of people with young onset Parkinson's, especially, really struggle to find their people.

You know, when you're 20, 30, 40 years younger than most of the people in the room, even though you have Parkinson's in common, you're at different stages of life.

There are things that, that younger folks with Parkinson's deal with that, that maybe older folks don't deal with because they're not in that same station of life.

All of us are lumped into one group and Parkinson's is so different anyway, especially for younger people.

Many of us are still working, many of us still have kids in the house.

A diagnosis like this doesn't fit with our trajectory or life plan, whether it's professional or otherwise.

And I hear that a lot from people with young onset especially that they just don't know where to go to find their people.

[Brian] Not that I was really seeking 'em out, but it was nice to know that I was with a group of individuals that could explain things to me when I needed to know something.

And there's a big relief in knowing that you're not alone.

- Yeah, that was huge for me too.

[gentle music] - Dating's kind of scary right now.

It was hard for me to find someone I felt like was there.

Not because I'm Brian Grant the basketball player.

Once we were together, it was like, okay, here's the deal.

I have PD and I started future-tripping.

I'm like, it's all good now 'cause I've only got a tremor.

[somber music] You get put into a corner to where it's constantly showing itself.

It's constantly making you do things that you normally wouldn't do.

Or have thoughts that you normally wouldn't have.

And you just gotta learn to be vulnerable.

[ball bouncing] [Allan] You know, I didn't know you were Canadian or I'd forgotten.

- From Calgary.

- Just one more reason I like you, I love the- - Yeah, and that's why I swear a lot.

So... - That's all right.

So you're three days out, how are you doing- - Chicago?

I was like, I have no idea what I'm gonna, you know, show up like.

'Cause usually I go and I have, you know, a time.

And I have my splits and pretty organized.

And this time it's like, honestly, it's just, okay, what's gonna happen for the time I start to the time I finish.

I'm doing this with the idea that this might, you know, definitely be my last marathon.

And I'm okay with that because I'm, I just actually feel lucky that I can still run.

[light upbeat music] I know that everything that gets me through that is gonna be sort of a dichotomy of being super excited, super grateful, to being emotional.

With Parkinson's, it is such a disease of loss.

You know, and yet I haven't lost a lot physically, but I think the emotional part, the idea of where my body's going to go, you know, that's the part that I feel like as I'm running the 26 miles, it's gonna be like leaving little parts of me, you know, my dreams, the things that I thought I was gonna do.

In a way, it's like a shedding.

Kinda like letting, letting some stuff go and be like, okay, I thought I was gonna be doing something else in life in five, 10 years and now I don't know what it's gonna look like.

Whereas, you know, at the end of the day, none of us know what it's gonna look like anyway.

But I never thought that it was gonna be Parkinson's.

[Allan] Right.

It's interesting because, before Parkinson's, I didn't live in the future, but I always had one eye kind of on the horizon.

I didn't see or take in what was in front of me.

The good or the challenging as much as I could have.

And for, you know, since Parkinson's, that's really changed almost, almost a 180-change.

I think about the future some, but, but I think a lot more about, about the present.

For me, focusing on today, or part of the day really goes a long way with, with sort of helping me curb my anxiety about the future.

Because as Wendell Berry, who's one of my intellectual heroes, says, "The future does not yet exist."

Right, so why worry about something that doesn't exist?

And for me, that's been a really important mantra.

And I say it to myself in different ways every, every morning and throughout the day.

Does that feel right to you?

- Yeah, well, you say it a much more eloquent way.

Wait, because I always say, wow, darn, I have Parkinson's and I think I know how I'm gonna die.

'cause I'm like, okay, it progresses differently for everyone, but we all end up at the same end point.

Right, and then as soon as I say that, ultimately someone always says, "Yeah, but you could still get hit by a bus, Keri," there's still other things that happen.

[Allan] Something else is gonna get you.

- Exactly, so full circle back to what your physician had said, like, "It's not killing you."

So, yeah, I mean, of course, I worry about the future.

Like I'm a single mom, I worry about finances, I worry about who's going to do my long-term caregiving.

You know, I don't wanna saddle my kids with it.

You know, those are the things that I think keep me up at night more than anything is what's gonna happen so I don't become a burden.

[instructor] We start in here, yep.

So, five, six, seven, five, six, seven, eight.

[tap tap] Seven, eight.

[tap tap] Seven, eight.

[tap tap] Seven, eight.

[tap tap] - You gotta keep, you know, your horizons.

You gotta keep looking ahead and don't let Parkinson's be who you are.

Dr. Savica looking at it as a separate disease from regular Parkinson's, you know, that almost gives me more hope because then I'm like, okay, so is this a subset?

Can they do research on that?

You know, how do you treat it?

Like we might all end at the same ending point, but we have a lot of years in between.

And so how we live those years, you know, having, we're all parents, that's huge.

When you're 70 years old, you're not worried as much about parenting.

And to me, that's the biggest thing.

That's the bigger part of Parkinson's versus the disease.

I can handle whatever Parkinson's brings to me, but what I don't want is the cascade of events that's gonna happen to my kids.

You know, that's what breaks my heart.

You know, how does it affect them?

[Allan] Yeah.

[somber music] Hey, Jimmy, I'm sorry that I could not make your event.

I'm so proud of you.

Keep doing what you're doing.

Your story needs to be told.

[emcee] He loves marathons and has competed as an American Ninja Warrior for the last five years!

[everybody applauds] The Jimmy Choi.

- Thank you.

The funny story is that I didn't think anything was wrong.

I didn't think anything was wrong because everything that I was feeling that was different or out of the ordinary can be explained away by everyday life of a 27-year-old.

My initial symptoms were twitches here and there.

And that can be explained away by stress of working in a high, you know, high stress corporate job.

[somber music] I didn't take the opportunity to really understand the diagnosis and instead, I went into denial of that diagnosis for the next eight years.

When I was told that I had Parkinson's, I didn't understand what it was.

I thought it was a disease for old people.

♪ ♪ One of the things I think contributes to my own denial is the fact that I think culturally, there is an issue as well because the cultural belief in, especially in an Asian family, is that any type of disease or anything that's wrong with you is a weakness to your family, a weakness to your name.

So the initial reaction is to hide and to suppress and to keep everything in secret.

And that's very difficult because you're not allowed to share and it's already hard enough for certain populations to have access to care and, but when you add in the cultural side of it, it makes it even harder.

It provides even more barriers.

That's one of the reasons why I do what I do, is to create the awareness so that everybody can have the access.

But you have to be your own advocate.

You have to be your own best patient for yourself.

No one's gonna do it for you.

♪ ♪ - All right, guys, what's a Jimmy Choi workout without what?

- Burpees.

- There we go.

You guys are going down into a pushup.

Right back up.

if you cannot do a pushup, It is okay to do a pushup from your knees right back up in three, okay?

I always say that I am no better than anybody else.

I was simply fighting for my own survival.

I was working out because it felt better for me.

And then at some point, because of what I was doing, somebody stuck a camera in my face.

Up until that point, everything I was doing is very selfish.

It's for me.

What am I going to do to make my body better?

[cheering and cow bells ringing] When somebody put a camera in front of me and people are starting to reach out to me, Hey Jimmy, you are helping me because of X, Y, and Z. I realized that this is bigger than me.

And then that became my purpose and I continued to do things of pushing my boundaries for me.

But because I have a platform, I'm going to share that with everybody.

And hopefully, even if one person can take a little bit of tidbit from what I'm sharing, that's one person I would've otherwise not helped.

- This workout structure is everybody's favorite.

It's called a EMOM, how many of you ever heard of EMOM?

Every minute on the minute.

Going to be doing sit ups to press with medicine ball.

All right, so feet are out, knees slightly bent.

If you feel more comfortable with your legs out to the side, by all means do it.

Okay, so we're gonna come out, hands are all the way up, right back to center and press.

So for 45 seconds, all you're doing is this.

Okay, medicine balls too much?

Put it down.

Just do sit-ups.

Okay, squish it all the way down.

Step on the other side, nice and easy.

I'm stable, you're gonna get down-- The things that a young onset Parkinson's patient has to do is gonna be completely different in their treatment than someone who was diagnosed in their late 60s or 70s, right?

Life priorities are different.

And because of that, you've gotta do different things.

People will come up to me all the time and who are older and says, "Well, I can't do what you do because you're 20 years younger than me, right?"

And I said, "You know what, that's fair, but that doesn't mean you can't do something right?

No matter how small or big it might be."

Staying active, pushing yourself, challenging yourself, keeps not only the mind sharp, but your body sharp.

Okay, I will tell you guys when to start, we're gonna start in 10 minutes.

I'm constantly telling everybody, please, don't compare yourself to me, to someone else.

Your trainer, your, don't compare yourself to anybody.

It is you against you.

And that's it.

All you can do is try to stay ahead of the Parkinson's inside you.

And if you can do that right, you're winning.

It's a progressive disease.

And if you can feel like you're remaining the same over time, you're winning.

- I wasn't accepting it until last year.

Like, I just feel very angry about everything's happening.

I can't write properly, I can't walk properly, and I'm different.

I just felt so angry about that.

But last year, I was having, I was holding a session with a group of women entrepreneurs and they were all sharing their stories and like a lot of vulnerability in the room, I realized, wow, I should think about my own story and share it with them.

So at that time, I decided that, yeah, Parkinson's is no longer a secret for me and I should let my friends and family know that.

And sometimes, I feel like if you talk about it, it's less intimidating and you can face it very bravely by talking about it with other people.

[Doctor] How long is your dose lasting for you typically?

- Five hours, six hours sometimes.

It depends how active I am, but if I run or exercise, I have to sometimes take an extra dose.

- Okay, do you ever take your dose sooner or you just end up needing an, do you take it sooner and then need an extra dose later in the day or?

- Well, I was on three doses a day of carbidopa/levodopa, and what I did is some days I take four if I need it, but not every day.

- Okay.

- Most days I'm still on it, three.

But if I'm feeling like I just need a little bit of a push, I'll take an extra.

- Okay.

Okay, so I'm gonna have you go down and back a couple times for me.

- Okay.

- Okay?

[Allan] Just like we usually do.

- Just like we usually do.

Yes.

- Okay.

- So what I'm looking for is to see how long your stride length is, how big of steps you're taking, watching your arm swing.

You've got great, good arm swing, you've got great posture.

You're taking nice big steps.

Your arms look very symmetric.

No freezing, or shuffling, or hesitation there with your walk.

And then I'm gonna have you stand here and face the wall for me.

I'm gonna pull you backwards.

And this is just the measure of testing your postural stability, your balance.

So what I want you to do is just stand stiff and strong.

I'm gonna try and pull you backwards.

Good.

And then I'm gonna do it one more time, just a little bit harder.

Great.

You took one step back.

That's still considered normal.

So anywhere between no steps and two steps back is considered normal.

It looks great.

Looks just like it did a year ago.

You know, even when I look at you sitting here, one of the things I notice is this hand's kind of nice, relaxed and open.

And this one, the fingers are just a little bit closer together.

Your thumb's kind of brought in.

- Right.

- You've got just a hint of tremor off and on.

There it is.

And when you walk too, just a little bit of that posturing of the hand.

- I've always had this peace about Allan, only because I know how resilient he is.

He said, "You know, damn, if I have this illness, I'm going to do something good with it somehow."

And it blows my mind to this day.

The many different methods.

You know, writing about it, supporting organizations, speaking publicly, talking to somebody's relative, newly diagnosed, he's very resolute.

- Welcome to PD Wise.

Davis Phinney is an Olympic bronze medalist, as well as a Tour de France stage winner who has celebrated the most victories of any cyclist in American history.

It's such a thrill to have you here today.

- Thank you, Allan, and the thrill is mine as well.

- Well, thank you.

Let's start at the beginning for those who may not know your story, tell us when you were diagnosed with Parkinson's and how that all came about.

- I've had it 15 years and it changes.

That's the one thing that I know is true, is if you, like you say, if you've seen one, you've seen one.

But likewise, if you've seen one year, you've seen a different year the next year, so... - Tremor dominant, I would say it's more the rigid sort of type.

So to be kind of in terms of my right side, particularly in my right arm.

So it'd be typing, writing, you know, that sort of thing, you know?

[Allan] Dr. Savica, welcome to PD Wise.

It's a pleasure to speak with you today.

- Thanks for inviting me.

It's really a pleasure to join you and opportunity to talk to you.

- We found that some symptoms tend to respond really well to the medicines that we have and others, others tend not to.

- The work of the foundation.

For those who may not be as familiar, what, what do you do?

You know, what is your reach, what's your mission, all of that.

- The Michael J.

Fox Foundation.

So our mission is to find better treatments and a cure for Parkinson's disease.

And that I think that was really born out of, I don't wanna speak for Michael, but he, I think he just wanted to... - Something you'd say to your, newly diagnosed-self, you know, Davis Phinney 20 plus years ago, who's just getting on the road, what would that be?

- I would say that, that patience is a virtue.

And that if you take your time and learn about enough about the disease and it's effects on you personally, that you're going to be living fairly well for a long time.

- Wait, C5 is down there, so I have a feeling he might just come down there.

- Brian.

How you doing, man?

I know, man, feeling better?

- Finally, get to meet you.

[Brian] Good to see you.

- Good to see you.

- When I retired and October 1st came, when my body's used to going into training camp.

I just went off the ledge.

- Wow.

- It was like free-falling in the darkness.

- So was it depression that you went into then?

- It was depression, yeah.

- Depression?

- Yeah, I was depressed sitting in the house and I lived in Miami, had a boat to go fishing, lived on a golf course, but none of that mattered to me.

The only thing that mattered to me was making sure there was enough Captain Crunch to fill my big bowl, enough milk, and that the satellite was working so I could watch the hunting gym.

- The last thing I thought was Parkinson's, that wasn't even on the table when we were going through the list.

Everything was like autoimmune, hormones, you know, you can't ask your body to do the same things you used to, like... Parkinson's wasn't even, I thought because I didn't have a tremor.

But then I have, you know, I have a tremor in my left pinky and always have, but I always just, you know, it's not big enough that I just figured it was coffee.

I've always felt nervous inside.

So I just thought it was just my sort of anxiety that I've always had this like, like low level anxiety.

Well, not always low level, but kind of the internal tremor.

[boat rumbling] - What you wanna do is you wanna let the rope and the boat pull you up.

Okay, most people, they try to pull themselves up and they end up going forward.

You wanna sit back, even if your butt's dragging the water, just keep your knees bent slightly and then you know, the boat will pull you up and then straighten out your legs.

Right, Brian or me, whoever's pulling you, is gonna start going and the board is gonna have a tendency to wanna pop up because it's sideways.

You're gonna help it by pushing down on your heels, right?

- All right, woo!

[engine revs] [gentle music] [Allan] I pledge hopefulness each morning saying to myself, sometimes aloud, "I am grateful for another day.

I will do my best to make it good.

I will focus on my strengths.

I will be hopeful."

My choice to begin each day in this way follows from a belief that hope helps us savor the moment.

To recognize that today is all we have.

I hold fast to other sources of hope, what I can still do despite Parkinson's and because of it, making meaning with illness, confident that my experience matters regardless of how it turns out, irrespective of finding a cure, helps me locate joy in the present and to heal.

So, Brian, you had a recent birthday.

We weren't able to come out to Portland and celebrate with you.

And so, we want to mark your 50th birthday and celebrate you today and say what a terrific human being you are and how grateful we are to have you in our lives.

♪ Happy birthday to you ♪ ♪ Happy birthday to you ♪ ♪ Happy birthday, dear Brian ♪ ♪ Happy birthday to you ♪ - Thank you.

[clap] We had a really good day yesterday on the water.

Yeah.

She got up on - First time.

- first time.

[gentle music] - I've talked to a lot of people, I've talked to like experts about hope because it's like, how do you cultivate hope when you, especially if you have apathy and depression and it's little things, it's looking forward to having lunch tomorrow with your wife, or it's looking forward to going with a friend to the coffee shop.

If you can look, if you can make a plan into the future, you can build hope that way.

'Cause with, if, if you're not looking forward to anything in life, then you've lost your hope.

And so it, it's really just about making sure you can take those baby steps forward and plan on them and fulfill those things.

[Allan] What has surprised you about treating, working with people who have young onset Parkinson's?

- People do well in my experience anyway, to just sort of keep living their lives, you know?

And I think that's true with anything that comes your way that's challenging.

Things happen.

You may have to adjust some things in your life, but doesn't mean you have to give up on living the way you envision living.

- ♪ Happy birthday to you ♪ [Allan] My story and my experience is mine.

And I never for a moment take anything for granted with respect to Parkinson's.

I may be able to do things now that I might not be able to do five or 10 or 15 years from now.

I'm not naive, but at the same time, I don't want to forego getting the most out of every moment that I can now, because I don't know how long I'll have it, you know, I mean, none of us do, but I didn't think much about it until I was diagnosed with Parkinson's.

I don't take much for granted anymore.

And I think that's a real gift of Parkinson's.

I wish I could have learned that and lived that at a much earlier age than I did.

One of the things that Parkinson's has done for me that I never would've imagined has really made me focus on the day.

Today is what we have and we hope we have lots of days, but we never know, we're never promised more days.

Parkinson's kind of woke me up to that, that it's really important to try to enjoy, make meaning, love every day because it's the only day we have.

[water splashing] [birds chirping] - I didn't know if we were coming tonight or tomorrow.

Beautiful house.

Beautiful wife and family, but he's gonna bring me up in here when my toes are looking like this.

[Allan laughing] Please can you get a close up.

So I got a couple of 'em when the dog came and started licking on my foot.

They were like, no, no.

[Allan laughing] I was like, go on.

[light piano music] [Announcer] Funding for this program made possible by Dean Engelage and Dan and Alice Stultz.

For a full list of funders, visit pdwise.com.