Beating Parkinson’s to the Punch with Laila Ali

Almost one million Americans live with Parkinson’s disease, and another 60,000 cases will be diagnosed this year alone. But while there isn’t a cure yet, our understanding of disease and the discovery of certain symptom-mitigating treatments are helping the millions of people with Parkinson’s each day. On this episode, Baratunde discusses the disease with some of the most notable advocates for those with Parkinson’s, Laila Ali, who watched her father, Muhammad Ali, consciously choose to battle the disease in the public eye for over 30 years; American Ninja Warrior Jimmy Choi, who was diagnosed at the early age of 27; Debi Brooks of The Michael J. Fox Foundation for Parkinson’s Research, and National Institutes for Health neurogeneticist Dr. Andy Singleton, who explains the latest findings in the fight against Parkinson’s. Dr. Singleton’s appearance on the podcast does not constitute any endorsement of 23andMe or any other genetics testing company.

 Background Reading:

 

 

Fox Insight is an online clinical study sponsored by The Michael J. Fox Foundation where people with Parkinson’s disease and their loved ones can share information that could transform the search for better treatments. Learn more at FoxInsight.org. 

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Episode Transcript

Speaker 1 (00:00):
I'm Baritone Day Thurston and this is Spit and I
Heart Radio podcast with twenty three in me. This is
the show that explores how DNA is changing our lives
and the world around us. Today we're gonna get the
very latest information on Parkinson's disease. In roughly one million

(00:23):
Americans will have been diagnosed to be living with this disease.
We get about sixty new diagnoses every year. And we've
gathered this conversation with a full range of people who
are knowledgeable of, impacted by, and working toward the eradication
of this disease. We have in the room with me

(00:43):
right here, Leila Ali a former World Championship professional boxer
twenty four and OH record twenty one knockout. She's an author,
she is a television host, she is a health and
wellness expert with her own product line, and she is
of course the young his daughter of Muhammad Adli, who
lived for over thirty years with the disease. He felt

(01:05):
like it made him even stronger to show people like
I have this disease, but I'm still gonna come out.
I'm not gonna hide. Nothing's gonna stop me. We have
Debbie Brooks with us. She is the co founder and
executive vice chairman of the Michael J. Fox Foundation, working
to deployed capital and innovative ways to move the needle
on this disease. I've come to appreciate the Parkinson's patients.
When this disease lands in their lap, They're likely going

(01:28):
to have a lot of good years in front of them,
but there are so many things they can start to
do right away that can set that the vector in
the best posture. We have. Dr Andy Singleton, a neuro
geneticist senior investigator at the National Institute for Aging, which
is part of the National Institutes for Health in i AGE.
Just from talking with patients, you see so much benefit

(01:49):
from the things that they pursue around exercise and dance
and yoga and doing the cross world and maintaining an
active lifestyle. And later on in the conversation, I'll be
talking to someone currently living with the disease. Jimmy Choi
three time American Ninja Warrior, an athlete, a motivational speaker,
and a Parkinson's advocate. I was told that I would

(02:12):
be in a wheelchair when I'm in my forties. I'm
far from being in a wheelchair. So I'd like to
start with Andy and Debbie especially to just kind of
lay the foundation down of what is Parkinson's and share
more numbers of who's affected, but also how how many
are at risk and why this is such a threat

(02:33):
that needs serious proactive management. Can one of you take
us into the basics of Parkinson's. We believe there are
around a million people affected with Parkinson's disease in North America,
and estimates suggest around six million people affected worldwide, although
that's probably a really gross underestimate. It's it's far more

(02:55):
people than that. I think what's particularly concerning is, of course,
our population is graying right where living longer, and the
proportion of people who are over fifty, over sixty, over
seven is increasing, so the number of people affected by
age related disorders will also increase, and of course Parkinson's

(03:15):
diseases an age related disorder. The biggest risk factor is
his age. Can you define what Parkinson's is? Many of
us have an image of tremors. We've known some world
famous and celebrity figures who've suffered from it. Can you
just lay down an elementary introduction to how the disease
even works and what its symptoms are, so we don't

(03:39):
really know how the disease works. When you think of
the disease, you think of what a patient looks like,
and I think one of the first things that you
notice is that the patient looks stiff, they're slow in movement,
they often have tremor, so these movement disorders the first
thing you notice. But when you talk to anyone with
Parkinson's disease, you realize there's so much more to it
than just the movement sort of. There's lots of other

(04:01):
things that affect p D patients. Depression, some issues with
memory and thinking, other kind of autonomic and disautonomic features
that affect all sorts of activities of daily living and
quality of life. The diseases and age associated disease. So
the older you are, there your risk. And with a

(04:21):
typical onset in the fifties or sixties something like that,
it's a slowly progressing disease typically, so patients will begin
with some kind of feature like a tremor or something
that can seem quite benign at first, but it's an
insidious disease and that it will just continue to progress.
There are some treatments that help to deal with the symptoms.

(04:42):
So they helped to mask or affect some of the
symptoms that you most commonly see in Parkinson's disease. But
there's no disease modifying treatments that the disease will march on.
There's no treatment yet to halt or slow the disease.
And Debbie, what is the Fox Foundations perspective on Parkinson's
and where the disease is today and where the battle

(05:04):
against it stands well. I think one of the things
that Andy mentioned, which is we don't have treatments that
really address the underlying disease course that remains the greatest
unmet need for patients, and so our organization is really
focused on how can we, in partnership with patients work
together to accelerate progress. And even though the disease is

(05:25):
slow moving over time, patients are really struggling with more
and more unmanaged elements of the disease and it becomes overwhelming.
If you know one person with Parkinson's disease, you know
one person with Parkinson's disease. It's really highly variable from
person to person, and so how do you bring together
a package of needs for one patient versus the next
and put an organizing principle around these things so that

(05:47):
you can advance progress. I want to talk a bit
about what that experience is, and Leila would turn to you,
because Debbi mentioned is a slow moving disease and it
progresses over time, and your father lived this disease for
just over thirty years. What do you remember of the
moment from your life where you were aware that something's

(06:08):
happening with your father. It's all a bit of a
blur in terms of when I first knew that he
had the disease. I remember probably being about seven years
old when I noticed a change in him with the
tremors and a little bit of a slurred speech. And
you hear kids in school saying, oh, your father has
brain damage and things like that, but I didn't really

(06:29):
understand whether he did, he didn't. He had a disease.
You know, as a kid that young, you don't really
understand even what a disease is. But I do remember
getting older, maybe when I was twelve thirteen, when I
really started to understand that he had a progressive disease Parkinson's,
and that he started changing more and more over the years.
I just remembered him always never wanting us to feel

(06:50):
sorry for him and explaining to us like he would
just say, oh, it's just my hand, it's just shaking,
but I'm fine. You know, everything else is fine. And
in terms of how your family operated and his role
in the family, over time, as the disease made progress
in his body, did that further effect, like how did
it show up in the family. Well, my parents divorced
when I was young, so I didn't actually live with

(07:11):
my father, but I would see him probably every three months,
so you notice changes even more when you're not there
every day. I would see him and say, okay, seems
a little worse as the years went by. And for
your own children, did they get a chance to interact
with him, did they have any observations they did? My
daughter Sydney had a really special connection with my father.

(07:32):
Sydney is eight years old, and ever since she was
a baby, she used to go to him and he
would hold her. And a lot of times children were
scared of my father because his energy was just so strong,
and then his hands were trembling tremors. He has big hands,
the big man, and she just was glued to him
at all and she would like touch his face and

(07:55):
he noticed too, like wow, she's not afraid of me.
But she would kiss him and hug him. So they
really had this spiritual connect. And I remember one day
we came to his house and he was having acupuncture
and we were like, wait, wait, don't go in there
right now. He's got all these needles, like that's gonna
be scared. But she ran in there and didn't care.
She hopped right on in the bed with him. And
I was like, okay, this one special that was It
was great to see. Can you describe how you fit

(08:16):
into the family? And so the trade you from him.
So I'm the youngest girl in the family and I'm
the only one that decided to become a boxer. Now,
my family was not surprised when I announced to them
that I was gonna go pro. My father didn't like it.
We tried to talk me out of it because it
wasn't antil I was about seventeen that I saw women's
boxing for the first time. I was like, had this

(08:38):
plan and I saw women's boxing, and I was like,
how did I not know women boxed? And that's when
I first realized that it was in me. I hadn't
even participated in sports up until that point, and I
remember thinking like, oh, was everyone going to think? And
a year later, I was training kind of in secrecy
after school after work, and I told my dad and
he was just like trying to talk me out, and
he's like, what's gonna happen if you get in the

(08:59):
ring and knocked down or you get knocked out or
I was like, well, I'm gonna do what you did.
I'm gonna get back up. And then if he finally
got frustrated and said what was really on his mind?
He says, not for women, it's not for you. It's
too hard. And I said, you know, I understand that, Dad,
but this is what I've decided to do. So he
supported me throughout my career. But I knew he was
afraid because he always said that Parkinson's he didn't feel
came from boxing. But I think that he still was

(09:21):
afraid of just me getting hurt in general, or who
knows what was really in the back of his mind,
and that persistence it seems evident in how he continued
to live with Parkinson's in terms of continuing to travel
doing his humanitarian work. From your experience and exposure to him.
Was that a conscious choice to get back up off
the floor and kind of keep pushing. Absolutely everything he
did was conscious and intentional and had purpose. So he

(09:45):
was adamant about the fact that boxing was just his
platform to do what he was really put on this
plan to do his humanitarian work, and he felt like
it made him even stronger to show people like, I
have this disease, but I'm still gonna come out. I'm
not gonna hide. Nothing's gonna stop me. This is obviously
a part the plan. He never sat around and felt
pity for himself. He didn't want other people too, because,
trust me, it was hard. It was hard traveling that way,

(10:08):
having hundreds of people crowding around you all the time
signing an autograph. How much more energy that took him
to do and look everyone in the eye and make
them feel special, picking up babies, doing all of that
all while having this disease. And I know it was tiring,
but it just showed me the will of a man
to get through all of that and to continue traveling
and doing his humanitarian work. He literally signed his own

(10:29):
fan mail, but he would get thousands of pieces of
males and he would love to stead at this big
large table in his office and sign each piece of mail,
just watching that how much he loved people, he loved
to give back, and he's just like, Wow, Yeah, I
was so proud of him in so many ways. I
want to bring Indian Debbie back in What do we

(10:49):
know about the origins of this disease, about his genetic origins,
about its environmental or at least what hence do we have.
We know so much more than we did really. When
genetic investigation started in this disease, which was back in before,
we thought there was no genetic component to the disease whatsoever,

(11:09):
or if there was, it was incredibly rare. That's changed
completely over the last twenty years. First of all, with
the discovery of of mutations that cause disease. You know,
if you carry them, you're going to get disease. Those
are generally pretty rare. But with the understanding in the
last ten years or so that there are myriad genetic factors,

(11:30):
common factors that we all carry that change your risk
for disease. So we know Parkinson's is a genetic disease,
but we also know it's an environmental disease because genetics
isn't deterministic genetics doesn't drive all of your risk for
a disease, and what else is there apart from chance
and the environment. So we really think of it as

(11:52):
a typical complex disease where your risk is brought about
by a combination of genetics and how you live your life,
and what other questions are we asking to try to
narrow that set of genes we're looking at, or that
set of environmental factors that may trigger those genes to
flip the switch onto the disease. As it turns out,
I think genetics is a lot easier to investigate than

(12:15):
the environment. I think our genomes huge, three billion base pairs,
but it's finite, it's three billion. Whereas your environment. You
think about all of the things that happened to you
during your life and how much of them happen, and
that's so much more complex and so much harder to
measure actually than genetics. So I think that a lot
of us are trying to take hints from genetics, from

(12:37):
the biological processes that we see affected by genes that
confer risk for disease, and ask the question do those
tell us anything about environment? And of course there are
lots of things that have been associated with environment and
risk for disease over the years, narrowing down that complexity,
trying to bring some order to it. I think, Debbie,
that's what the Michael J. Fox Foundation has been trying

(13:00):
to accelerate in terms of how you're using your money
and how you're operating in the philanthropic space. Can you
talk about first how you came to this world and
then and give us an introduction to what the Foundation's
approaches and how it's different. Sure, of course we're started
by a patient also, Michael Fox, who himself has now
been living with the disease for twenty nine years, and

(13:23):
when he was public and was called into action and
just was motivated by the way one of the first
people he spoke with was Mohammed and so they weren'tindered
spirits around this. And but Michael's sense was as a patient,
what could he do and what could more people do
to galvanize an effort to elevate Parkinson's as a field

(13:43):
of study and to just bring greater awareness. And so
we didn't really have much more of a roadmap than that,
what's the greatest on met need and what can we
do to move the dial in that regard, and so
what we started out with was, well, let's try to
raise some money, and then we got to figure out
the smartest way to spend end it. And my background
was more from business and finance, and that was a

(14:05):
good fit for me. I was practiced at thinking about
how to use capital, how much risk to take, and
so we really set out at the beginning saying, no
matter how much money, how are we going to decide
the smartest way to spend it. The philanthropy in disease
space is minuscule in some ways in comparison to what
the government spends and what pharmaceutical companies spend. If you're
going to have a smaller relative amount, you have to

(14:27):
really think about what's the most exponentially impactful way to
spend it. As we've raised more and more money, we've
put it to work aggressively, mostly trying to do the
things that other money won't do. And that's often trying
to see all these things are being tried, but what
makes us keep coming up short? And some of the
things are to take ideas that are kind of an

(14:47):
early stages and help move them over the kind of
complications of getting out of this is interesting science to
what kind of science and what's the last bits of
data we need to know that this actually can be
turned into a treatment. That's an uncommon place for capital
to be available when it comes to taking aha moments

(15:07):
in a lab all the way to the drug store shelf.
And so we did pick that sweet spot. How do
you pick up things when they're ripe and make sure
there's enough additional data around them so a pharmaceutical commony
you will pick it up. And then the second thing
is we'd like to really understand how people get this
disease and what the disease really is. And even though
it's been described for over two hundred years, we really

(15:29):
just describe the symptoms. We don't really know enough about
what's going on underneath. One of our beliefs has been
let's do what we can't actually study it in the
patients themselves. It's not that nobody thinks to do that,
it's just it's very expensive and it's hard. We've built
as a platform to engage with hundreds of thousands of
patients to really bring them into the research process as

(15:50):
participants in research by providing information, including in some cases
their genetic samples, but also to be part of the
living body of knowledge around what does this disease look like?
And that's particularly important when you have a highly variable
disease like Parkinson's. You need a lot of people, need
scale to really gather the insights you're hoping for. You know,

(16:12):
there's a principle that's underneath that approach that I've heard
in other circles and more activist circles that says people
closest to the problem should be closest to the solution.
So congratulations on making the simple scalable in that sense,
she'd work in advocacy for health and wellness in general.
Where does that come from for you and what exactly

(16:32):
are you doing well? When I decided to become a boxer,
I went on this journey and I was like, Okay,
it's about what I put in my body hot I
think the rest that I get everything my mental state.
That's what inspired me because I saw the change I
transformed my body in my mind. I became an elite
athlete just by making my mind up to do so
and being consistent. Then when I had children, I started

(16:53):
just doing more research on organic food and na GMOs
and just really immersed myself in that world then a course,
knowing that we have all these epidemics that are heart
disease and diabetes and all these things that come from
lifestyle choices a lot of the time, so people really
need information, and they're just overwhelmed by supposed to eat

(17:13):
this or don't eat that, or this is healthy soil
that's not. In Every season there's a new trending diet
or workout, and you gotta filter through it. But I
try to encourage people to keep it simple. Nobody ever
argues that you shouldn't need more vegetables, you shouldn't need
clean you know, I don't care if you're vegan or
if you're doing keto or paleo, whatever it is, because

(17:35):
our bodies are always constantly working on our behalf to
try to keep up with everything that we're doing. I
just encourage people to go on a journey with me,
and I know that a lot of people just aren't
educated about what they should and shouldn't beating. I fear
in life is to feel like I didn't do the
best that I could to take care of myself, because
we only have one life to live one body. Of course,

(17:56):
I'm not in control of outcome of everything, but I
am in control of I put in my body and
what I choose to have in my environment. The role
of well being healthy exercise has come up in some
of the research. I'm talking with Jimmy Choy later about that,
doctor Andy or debbut or both. What do we know
about this, the role of exercise and overall healthy lifestyle

(18:19):
choices that technically help slow the disease or at least
help people live with it with a bit more comfort
and confidence. I think you hit on it there at
the end, which is I think that it helps people
live with it in a more functional way, helps them
be more comfortable with the disease. I think that exercising
your body, exercising your mind, they have to be good things.
They have to help you deal with the problems that

(18:41):
you're facing with a complex disease like this. I think
the amount of research that's in this area is small,
It's not as large as we like it to be.
But just from talking with patients, you see so much
benefit from the things that they pursue around exercise and
dance and yoga and doing the cross word and maintaining
an active lifestyle. There is a component to Paarlkinson's disease

(19:05):
that affects the way that a patient thinks and processes information.
And I think if you practice the skill of thinking
and processing information, you're protecting yourself to a certain degree.
I've come to appreciate the Parkinson's patients when this disease
lands in their lap, They're likely going to have a
lot of good years in front of them, but there
are so many things they can start to do right

(19:26):
away that can set that the vector in the best posture,
and so things like healthy lifestyle choices, and they're not
super specific, as Laylis speaking, it's simple things. A good
heart healthy diet is a good brain healthy diet. Maintaining
a social network is also helpful for mental acuity. There

(19:46):
these things really come together, and I've been appreciating more
and more that any disease of aging, it's almost the
time of life where you need to be the healthiest.
We think of that as oh, in our thirties or
in our forties, we really want to be healthy, but
actually have come to appreciate it when you turn sixty,
and that's when you really need to get serious about
a really holistic sense of what healthiness is. And it's sleep, exercise,

(20:10):
functional diets, social worlds, even frame of mind, optimism. These
things they can make a big difference, Leila. I'm thinking
about your father's experience from what I could see from
a very distant outside, and he seemed to have some
of those elements, the optimism, big family, and a lot
of people around the world who loved him, and he's
staying engage in the world. Could you, from your closer
perspective see the effects of that on how he approached

(20:32):
this disease. Definitely, my father, it really helped all the
love that he had around him. Obviously, just everywhere he
went he got a standing ovation. People would come to
tears and he loved it. Trust me. We'll be driving
down the street and he's like watch this. Watch this.
They roll down the window and just wait for the
person next to them to notice, Oh my god, it's
Muhammad Ali. But then just all the love of all
of his children and talking to him, interacting with him.

(20:55):
But I mean, you know, we still do puzzles with him.
He's to draw, he'd liked to look through mad magazines,
you know, and just really keep his brain going. And
we're human beings were meant to be touched and loved
and have those relationships and things like that. So it
definitely as a holistic point of view, what is the
role of genetics, And that is probably back to Andy

(21:17):
as the neuro geneticists around the table here, but people's
understanding of their own genetics. Where the science is in
getting a little closer to understanding how this disease operates.
Where do we stand with that? Yeah, the science is incredible.
The pace of discovery is really amazing. I mentioned that
we had no genes or no mutations that cause disease

(21:38):
back in ninety six. The first was discovered in ninety seven,
then there was slow winds over the next few years.
The most recent analysis of Parkinson's patients included somewhere in
the region of about sixty thou patients and one and
a half million people without disease. So the genetics of
those folks and that's led us to ninety risk factors

(21:59):
for ease genetic risk factors for disease. We've gone from
zero to somewhere in the region of a hundred over
the space of twenty years, and that pace of discovery
is just getting faster and faster and faster. There are
a couple of reasons. Of course, why do we look
for genes that cause or contribute towards disease? First is prediction.
Can you look at someone's genetics and make a prediction

(22:23):
for their risk for a disease. The second and kind
of more traditional approach has been, if you understand genetics,
you know what flavor of a gene or what type
of a gene is involved in the disease process, so
you can begin to put together networks of those genes
and pathways and biological processes that actually are the disease itself,

(22:43):
the processes of the disease itself. So if you understand
those processes, you're not kind of fumbling around in the
dark anymore for a treatment. You're aiming a treatment at
those processes. You're trying to stop the underlying disease at
the molecular level. It's like turning the lights on in
a dark Roman seeing was really there. Yeah, Actually, that's
a great analogy. I always think of it as imagine

(23:04):
you've got this incredibly massive building with thousands and thousands
of windows, and you have to understand what goes on
in that building, and each gene is kind of a
window into that building. It gives you an idea of
what the processes are that's going on in there, and
hopefully if we understand those processes, we can stop the disease.
Do you all think that understanding what goes on behind

(23:28):
those windows is going to be increasingly the responsibility not
of advanced research scientists and disease warriors and fighters, but
everyday people who want to live a healthy life. There
are more and more of us now who have our
own genetic information and can put that to use and
understanding disease and understanding not just Parkinson's disease, but every disease. Debbie,

(23:49):
can you describe what people listening can do to help
what the foundation is doing? Yeah, particularly for Parkinson's patients
and their family members. If they're not already involved this
and thinking about it, I hope they'll consider it. One
of the ways it's kind of relevant to our discussion
today is a platform called fox Insight, and fox Insight
is a place where any Parkinson's patient and actually non

(24:12):
Parkinson's patients can go online and you tell us if
you're a Parkinson's patient, you tell us if you're not,
and you get a series of surveys once a quarter,
so four times a year. You take about a half
hour forty five minutes to answer a series of questions.
We already have about forty people who are in this platform,
but we need a hundred thousand. I really try to

(24:33):
encourage people to think about doing it, and I do
it myself. This data is available to researchers in real time,
and it's helping us part all sorts of elements understanding
what patients experience, how it's changing over time, which mix
of symptoms they happen to have. We actually have a
partnership with twenty three me where we pay for Parkinson's

(24:53):
patients who were enrolled in this study to actually spit
into a test tube and add their genetic information to
the information that they share through the surveys, which was
really their lived experience of the disease, everything from what
symptoms bug them to what medications they're on if they
have a family history, and then we laid that DNA
next to it. This is an incredibly powerful combination and

(25:16):
enables us, particularly if we have more and more people
doing it, to dig in and get more insights than
we have today. I'm sitting here now with Jimmy Choy,
American Ninja warrior, athlete, motivational speaker, Parkinson's advocate, and just

(25:39):
amazing positive back can already tell from interaction with you,
Thank you that you're infectious in a good way. I
want to hear in your words your origin story of
Parkinson's in your life. Well, I was diagnosed at a
very young age. I was only seven years old. And
this was back in two thousand and three. My wife
and I had just gotten married and we were starting

(26:01):
our lives together. You know, we had a mortgage, right,
you were grown up, we were finally adults. Um. Back then,
I knew nothing about Parkinson's. I was active and played
a lot of golf. Um, so I'm gonna be stiff.
Especially I refused to ride in a cart. I always walked,
and I would carry forty pounds of clubs in my back.
So being a little stiff after walking eighteen holes is normal.

(26:24):
I worked in I T industry. This is back in
the early nineties and the dot com boom, so being
stressed at work is very common. Minor twitches here and
there can explain away these things that I'm feeling. I
was losing my balance, and you know, I just always
thought maybe I was just not paying attention being a klutz.
So everyday life can be used to explain away the

(26:45):
things that I was feeling. How did you decide that
this could no longer be explained away? Actually I didn't,
someone else did. I bought life insurance, and of course
what comes with the life insurance is an insurance physical, right,
the insurance physics of the nurse that came and did
the physical actually noticed some things about me, and all
started with the dilation of my pupils being really slow.

(27:07):
And then she explained to me that, hey, you know,
I do insurance physicals on the side, and I actually
just work in a neurologist office. She never said the
word Parkinson's. She never said anything else except that I
should have a discussion with my doctor about the things
that we're about to talk about, which is all related
around the way that I was moving and things that
she was noticing. I wasn't swinging my arms when I

(27:29):
walked across the room and back. My pupils are stallating
really slow, and I would have stiffness and mine twitches
here and there, one referral after another, a easy four
to six months later and the whole diagnosis process. I
was finally told that I have Parkinson's. What did they

(27:50):
discover in your body that confirmed that it's Parkinson's. Gonna know,
there's no blood test for it. There's absolutely no blood
tests for Parkinson's. There is no single thing that you
can do to tell you that you have or don't
have Parkinson's. The most reliable thing back then was what
they called a D A T scan, and it's a
brain scan that essentially looks for changes in the area

(28:11):
of the brain where dopamine is being produced. And even
that is unreliable, they say that would be an indicator.
And then after we look at the scans, then they said,
all right, it looks like you might have something. So
here's some drugs to take, and these are Parkinson's medications,
which is leveodpa carbon dopa. If my body reacts positively

(28:32):
to these drugs, then that's how I was diagnosed. And
that's exactly what happened. So you find out four to
six months later that you have this disease and you
don't do anything about No. Absolutely, I couldn't get my
head around it. I always thought that Parkinson's was for
older people. I never knew that someone who was in

(28:52):
their twenties can possibly have it. I was convinced myself
that my doctors are wrong. After three opinions, all three
neurologists were wrong. I could myself. I convinced myself that
I would just push through it and it would go away,
just like everything else. You thought you could shake it up.
I thought I can just shake it off and walk off,
and walk it off exactly. Wrote some dirt on it,

(29:13):
and we're good to go. For the next eight years,
I didn't go back regularly. I only went back when
I needed refills, and I took the same dose of medication,
no changes. Didn't even open a pamphlet that they gave me.
When I was diagnosed. I went into full denial mode.
How is your wife responding in this period where you

(29:34):
both know you have this but you're doing the bare
minimum to manage it. She didn't even know it first.
I didn't tell her for a couple more months after
I was diagnosed. Only when I decided that I would
have to take medication regularly did I tell her. How
did that go? I think it was shock and it
was more disbelief on her part. She's like, what you're kidding.

(29:55):
That can't be right. And then I think she took
the same approach that I took because she's getting her
shoes from me, and if I'm not displaying any signs
that I need help, then she didn't think she needed
to help at the time. Eight years later, my disease
has progressed to the point where I was walking with
a kne because I kept falling over. I became very interactive.

(30:18):
I weighed actually two pounds two hundred and fifty pounds
at one point, like a fifty increase in my weight.
It has gotten so hard to move to this point
that I just stopped moving. I would put on weight.
Without the cane, I could fall. So that's how I
lived my daily life. One day, coming down the stairs
at home, I was carrying my then infant son, he

(30:39):
was ten months old. I went and started proceeded downstairs,
and I, of course, I fell and I tumbled down
the stairs with my son. So you're desperately trying to
save his life, protect him, even though the act of
carrying him down the steps was putting him in danger. Absolutely.
I had quite a few thoughts immediately after the fall.

(30:59):
Number one was is he okay. Number two. I looked
over my wife and my daughter both witnessed this, and
the looks on their faces was probably the most disheartening
thing that I can see. At that time, my son
was okay, thankfully, but at the same time, I now
realized that I've become a safety issue for my kids.
In my mind, I've become a burden to my family

(31:20):
because now not only does my wife have to worry
about the kids, she has to worry about me. So
would you do? I thought about throwing the towel. To
be honest, I'm not gonna lie. It was the dark
time in our lives. Frustration, anger, depression, all that stuff,
simply because I couldn't move, I couldn't play with my kids.
I couldn't live quote unquote normal active lifestyle. But then,

(31:46):
after I thought about it for a little bit, I
started doing research and for the first time I started
to look and opened that pamphlet that I was given
that I never opened. Well, I finally opened it, and
then my wife and I started talking about the things
that we need to learn about Parkinson's. We studied it
together and we learned. I noticed that there's no cure

(32:10):
out there. Obviously, but I also noticed that there's a
lot of clinical trials available and they were all starving
for participants. Nobody is signing up for these things. So
that's what I told my wife. I told her, Hey,
you know, we both know I'm not smart enough to
find the cure, right, she should not her head immediately. Um,
we obviously can't fund the cure because it takes a

(32:31):
lot of money. So that's what I was gonna do.
I was going to give up my body for science.
I was going to sign up for as many of
these clinical trials as I possibly can and take part
in them, somewhere as simple as answering questions. Some involved
experiment therapies. So I did them all. Whoever we accept me,
I did it. So you go from hyper passive to
hyperactive and hyperactive in my education. One thing that I've

(32:55):
noticed doing these clinical trials is that everywhere I look,
exercises mentioned all the time, and it's just it was
mind blowing to me because I have a movement disorder,
right and they want me to move That was crazy, right,
But then it turns out that we now know today
that high intensity exercise is the only treatment proven too

(33:16):
slow progression of Parkinson's tell me what that feels like
in your body. I always say that it's that moment
of how do you describe it? That that moment, right,
I had to build my way up. Right. I started walking,
and then I started jogging and I started running. But
I was doing that long enough to develop what they
call the runners high, and that's essentially release of endorphins

(33:38):
in your brains. That makes you feel happier than you
really are. Right, Because let's be honest, running sucks, thank you.
You know, I'm not saying runnings for everybody, but you
know I was doing it because it was making me
feel better, and it had to do with the runners high.
But more I exercised, the better I felt. It just
made me want to do more. It really did become

(33:59):
my drug in more ways than one. It was a
therapy drug. And it's also almost like narcotics because I
wanted to do more and I couldn't get enough of it,
so I just kept pushing. I've read your stats. I
feel like I'm looking at a sports program in an
old players card. He's got one ultra marathon, fifteen marathons,
one hundred half marathons. American Ninja Warrior two seasons, three seasons.

(34:24):
That up. Well. I always joke that on a playground,
nobody would ever pick me. But I think that's the
mindset that I have today that allows me to do
a lot of these things. I mean, when I started running,
I'd never run anything more than a mile, But my
first five k came in two thousand and twelve, and
ever since two thousand and twelve, I ran all those

(34:45):
races you mentioned, and then some because there's also triathlons
in there. There's also century bike rides in there. In fact,
I was the first person on record with Parkinson's to
complete a hundred mile bike ride in under five hours,
and that's holding twenty miles per hour for five hours.
And I was able to do these things because I
kept pushing myself. I kept putting one ft in front

(35:06):
of the other. And my model was what can I
do today that's better than yesterday? Because I'm gonna have
good days and I'm gonna have bad days, And on
those bad days, I'll be honest with I don't even
want to get out of bed. I just want to
lay down and I just want to sleep, or I
just want to rest. But even on those days, I
have to make myself get up. I know on those
days I'm not going to get more than yesterday, but

(35:29):
at least I'm up and moving, and then when I
come back the next day, if I feel better, then
I go after it. Can you talk a bit about
what it's taken to emotionally retrain yourself and mentally retrain yourself.
One of the things that I learned is that this
is not a hobby. So the mental preparedness that I

(35:49):
have to tell myself to get after it every day,
to do my regiment, whatever it is, exercise, stretching, keeping
track of my medication so I can keep a log
from my doctor so we can both work better together
to develop the right dosage and the right treatment plan
for me. Because the only person that has this data
is me, and my doctors are smart enough to help me.

(36:11):
But I have to provide that data. So you have
to be disciplined to exercise, to take your meds, to
keep track of what everything is, and then provide that
data so that you can help yourself. So it is
a lifestyle change. Does that level of commitment take any
other tolls with your partnership with your wife? I mean
this is a new level of dedication in your life
to your own well being. But it takes a lot

(36:32):
of energy. It does take a lot of energy. And
I'll tell you what that first eight years when I
was isolated, I was angry, constantly yelling at my family,
arguing my wife, that's not healthy. But after I started
working out and I started finding my active side, my
family became my cheerleaders every event, every race. My wife
is at the finish line. My kids, they were younger.

(36:54):
You can't expect them to sit there for four hours
away for me to finish marathon, but they're always there
for me. When I told my wife I needed to
go and train on a Saturday morning, she was more
than happy to do it, and she supported me because
she can see the difference in the way that I
was moving, and she can see the difference in the
way that I was emotionally much happier. So for her,

(37:16):
I like to say that it made the things that
I'm doing also made it easier for her as well.
One of those people ask me, where do you find
time to do all this exercise? Yeah, don't you have
to work? You have kids to take care of. Well.
One of the symptoms of people with Parkinson's is in Samnia.
So when I can't sleep, I often just get up
and go run midnight for ten miles, or I'll go

(37:39):
out and go to the gym. What does it meant
to you to be so public with your disease, with
how you're managing it, and to, more formally, in terms
of Team Fox and the Michael J. Fox Foundation, become
this ambassador on behalf of other patients and families. I'll
be very honest. In the beginning, it was all about
self preservation. It was about me, Jimmy, Jimmy, Jimmy. I

(37:59):
was unning and exercising, and I was feeling a lot
better for myself, and I was doing these things to
make myself feel better. But it wasn't until I decided
to run the Chicago Marathon in two thousand and twelve.
I was late to the party interns of register. I
wanted to register a month before the actual event itself,
but it was sold out and the only way in

(38:20):
was through charity. And of course, if I'm going to
run for charity, I'm going to find a charity that
supports Parkinson's research or Parkinson's programs. I've known about Michael J.
Fox Foundation, but I didn't know about Team Fox and
that was really where I found Team Fox for the
first time. I need defined Team Fox for Team Fox
is the grassroots fundraising arm at the Michael J. Fox Foundation.

(38:40):
They empower volunteers to create their own events and raise money.
And the beauty of it is, since I got involved,
of every dollar raised for Team Fox goes directly to research,
so that's why it is so important. So I decided
that I was going to accept this BIB and it
was two thousand dollars as a fundraising commitment, and I

(39:01):
had never fundraised that much before. I need to start
telling people why I'm doing this. You go to your
friends when you need to fundraise, right, you go to
your family. So then they're like, well, let's call it fundraising,
not borrowing money for a cast. So in that one
month's time, I've raised over five thousand dollars for the
Michael J. Fox Foundation, and I've reached out to other

(39:22):
people with Parkinson's trying to do the same thing, whether
or not they're fundraising for other efforts. Because now I'm
part of Team Fox. And that's how I got involved
with the Michael J. Fox Foundation and Team Foxon, and
I met a lot of people through that process that
they've become my family now, and now I want to
protect my family. I want to keep doing the things
that I'm doing because the more money I raised, the

(39:43):
better it is for the cause. It's inching us towards
that goal, which is to find that cure. There's many
people out there with Parkinson's that aren't able to do
the things that I'm able to do. So sometimes I
look at it where I have to pick up some
slack for some others. I have to run and move
for those we can't, so that hopefully one day they can.
And what started out as a selfish endeavor has now

(40:06):
become there's a purpose in all this. And then the
more that I did along the way, eventually somebody stuck
a camera in front of me. Oh boy. And when
I competed on my first season in American Ninja Word
by the Way, my daughter dared me to try out.
That's how that happened, and I couldn't say no to
her anymore. For years I've told her, oh, you know,

(40:27):
I don't have the strength and I have Parkinson's. Come on,
this is the best excuse in the world. To not
go on American in War. So I did it for her,
and then because of my work and connection with the
Michael J. Fox Foundation, it was easy to be public
to share that my story with the nation and with
the world. Really, how much money do you think you've

(40:47):
raised through Team Fox activities over these years. So we
mentioned all those athletic accolades. Those are all great, But
what I'm truly most proud of is the fact that
my wife and I have helped raise for more than
four hundred now US for the Michael J. Fox Foundation.
Every penny of that went directly to research. I can't
be more grateful than that. What's next for you? So

(41:09):
I'm always looking for the next physical challenge, whatever it
might be. But yet at the same time, nowadays I
have to be mindful about my future with my family.
I've always wanted to do a twenty four hour bike ride,
which means I would ride from one city to another
roughly miles in twenty four hours. I've always wanted to
do that, and I think I'm going to put that

(41:31):
one back on my radar. There's a lot of endurance
things that I want to go back and doing because
high intensity exercise I need to keep doing it, but
I need to do it with as little impact on
my body as possible. Cycling is one of those ways
to do in it. So who knows we're going to
bring that back? Have you felt that you are pushing
back the disease or that you're managing its encroachment on

(41:54):
you better because of the regiment of the past several years,
the stronger I got, the symptoms never went away, right,
But I'm preparing my body to better handle it. That's
how it best describe it. But am I confident enough
to say that I believe that I've slow the progression absolutely?
Because remember I was walking with a Kane That's right.
Right now, I can run for hours, I can swing

(42:16):
on things and fly from bar to bar, or whatever
it is that you want me to do, I'll try it.
I was told that I would be in a wheelchair
when I'm in my forties. I'm far from being in
a wheelchair. Taking things to the next level. It will
always be what I'm going to try to do. The
idea is that I would keep pushing right, and I

(42:37):
would encourage others to do the same thing. So what
has Parkinson's taught you? It taught me that parkinson sucks.
All right, let me be clear, because I'm very positive
in the way that I talked about how I live
with it. A lot of times people can have the
wrong sense that is he happy that he has parkins is. No,
it sucks. I wouldn't wish it on anybody else, Absolutely not.

(43:02):
But at the same time, Parkinson's has brought me some
things in return that I would otherwise never have if
I was never diagnosed with Parkinson's. Friends, for one, people
that have met other people fighting the disease to have
positive mindset. They provide me with inspiration. They provide me
with friendship and guidance to how to live better with

(43:25):
the disease. The physical activity. I'm in the best shape
of my life. If I was never diagnosed with Parkinson's,
who knows what shape I would be in right now?
Who knows what I would be doing. People ask me
all the time, Jimmy, can you imagine how much stronger
you would be, how much master you would be? With
our Parkinson's? I said, I would never be doing these
things if I wasn't diagnosed with Parkinson's. So thinking back

(43:47):
on it, it still sucks. But at the same time.
I think there are ways that people living with Parkinson's
can still live well. But it's all about perspective, and
it's all about how you look at the things that
you're doing every day while living with the disease. Man,
thank you for sharing your story with me, with all

(44:07):
of us, this hyper passive to hyperactive in so many
ways to shift in perspective, these new choices that you've
made within the context of a disease that often doesn't
leave people feeling like they have very many choices at all.
How can people follow your work? Find you get engaged
on the internet platforms of the day. Well, I'm on
Instagram j C fox Ninja, same thing on Facebook at

(44:29):
j C fox Ninja. I could be found on my
own website, the fox Ninja dot com as t H
e o x ninja dot com. And I helped your
listeners and come out and follow me. Wow. Jimmy's firsthand
experience with Parkinson's is certainly inspiring an eye opening. It

(44:50):
also brings to mind the importance of hearing from patients directly.
On that note, I'm curious as to what you all
have found to be some of the misperceptions out there
to people getting wrong. What are some of the points
of ignorance around this disease that we can help clear up.
But I think to be touched on this earlier actually,
which is that it's one disease. Really, I think that
we're really beginning to understand that one person's Parkinson's disease

(45:14):
isn't another person's Parkinson's disease. And there's this whole array
of signs and symptoms and progression, and they vary incredibly
from person to person. All of the work that is
done now is aimed at trying to understand what drives
those differences. Way is one person's parkinson is different to
the others. One of the things I think about, which

(45:35):
follows on Andy's point, is that there's not a single solution.
It's human nature. You're diagnosed with the disease, and your
first notion is what can you give me? How are
we going to treat this? And you realize quickly in
Parkinson's there's kind of good news bad news. One, we
actually have some pretty good drugs that help manage the symptoms,
and so for the patient, once they start taking those medications,

(45:57):
they actually feel better and they feel there's some control
with their not really prepared for is the fact that
over time the disease overwhelms the value of the medications
we have today. What I see as a misperception is
that just because we don't have the right answer for
you right now doesn't mean it's never going to be there.
And these things don't fall from trees, and so one

(46:18):
of the things we think about is that how can
patients be the solution they're looking for? And it circles
back around to some of our central tenets of getting
patients involved in research. Sometimes those are trials where we're
testing new treatments out drug trials, real interventions, and sometimes
it's just participating in research in a way where you
help advance the learning and the understanding and the variability

(46:41):
and help answer questions like the one Andy put forth,
which is is this one disease? This notion that it's
kind of a monolithic thing, I think is probably a
pretty major misconception. I'd also say that we're making lots
of progress, and because progress doesn't happen in a day,
it doesn't show up a new cycle in the way
other things that we can break through on do. And

(47:04):
because these are really long cycles, by the way, they're
getting faster. The velocity of progress right now is so
inspiring and very exciting, and it shows all over the
work we see in the field. But there is a
lot of excitement and things are going to change. We
tend to overestimate how fast they can change in the
short run, but we're underestimating how much is really changing
in the matter of three to five years. And in

(47:25):
a disease like Parkinson's where you can live decades with it,
that needs a lot of progress in your potential lifetime.
I think there's a lot to be excited about. And
do you have a website for us or any kind
of call to action or engage for our list. There's
a support and of the work you're doing. Actually, I
think a great resources to funnel through the Michael J.
Fox Foundation. One of the things that has changed over
the last ten fifteen years is that I think the

(47:47):
Paulkinson's research community is now a real community. We're not
working individually and lapsed by ourselves. We work as a community,
and I think a large part of the reason for
that is the Fox Foundations go through them, They'll funnel
it to the right folks. Laila, I'm coming back to you,
what is your call to action to people in terms
of engaging in their own health and where would you

(48:07):
send them, where would you ask them to get involved? Well, first,
I want individuals to recognize that they can take their
health into their own hands. You can be in control
of your health. Don't think that, oh, I just get
older and I'm going to get sick. I know people
who are sixties seventy and in better shape than I'm
in physically. They're still running marathons and they look great.
Their skin is glowing, and they're mentally sharp, and they're

(48:30):
living life with vitality. Who were living in a time
where people are tired, they can't sleep, life feels so rough,
they don't have vitality. They're just trying to make it.
And I just want people to remember what life is
really all about. For me, it's really about replenishing your health,
replenishing your mindset, and then replenishing your purpose in that order.
If you don't have your health, you don't have anything

(48:50):
finding your passion because to me, that's what's gonna keep
you going is having that passion. So through the Laylaally
lifestyle brand, I have a website lailally dot com I
have content, their tips and tools where I'm really using
my story, my way of thinking, just to inspire others.
And I'm really trying to reach that audience that just
needs inspiration to get going. Just get going, get on

(49:11):
the journey, take that first step, and that's really all
that you have to do. And then there's just so
much information out there, and you're gonna slip sometimes even
I do. I mean, trust me, I love a glazed donut,
you know what I'm saying. I love some peach cobbla
a la mode. You know. That's why I did my
cookbook Food for Life, because I'm like, I want comfort food,
but I want it prepared in a healthy, nutritious way. Now.

(49:32):
I don't have a lot of time. I have two
young children. I have eleven year old eight year old husband.
He's like my third child. I'm just joking. I'm just joking.
I can make excuses all day long sometimes and go
weeks and I'm just too tired to work out. But
then when I get my mindset and I go, you
know what, even if it's twenty minutes or fifteen minutes,
just to get something in because it makes me feel good.
It gets those good endorphins going, and it just makes

(49:53):
a difference in my day. I want to feel proud
of myself. I don't want to feel like, oh I
didn't do it again. Don't have of this two items
on your to do list, start with one to three
things that you can actually get done. It's really just
simple steps like that. I think this goal of living
with vitality captures a lot of what we've heard in
this episode. Jimmy Choy talks about it slightly different words,

(50:15):
same spirit, and the way the Michael J. Fox Foundation
is approaching this, the way Andy's work living with this
disease with more vitality and preparing to live with it
or any other symptom of aging, which hopefully we all
get a chance to experience. That's part of the journey
of life. So I just thank you for it, and
I thank all of you all for being a part
of this and sharing your story and sharing your work

(50:35):
and helping our listeners engage in a life of vitality.
I'm gonna use that. I want to dig in more
on today's topics and guests. Check our show notes, and
if you enjoyed the episode, share it with a friend.
All your friends and be sure to leave a review.
If you want more surprising stories about how we're all related,

(50:56):
search and follow Spit on I Heart Radio or subscribe
wherever you listen to podcasts. Spit is an I Heart
Radio podcast with twenty three and me. I'm Barratune Day Thurston.
You can find out more about me at barratune day
dot com or on social media wherever Barratune Days are
found