Speaker 1: I'm Baritone Day Thurston and this is Spit and I
Speaker 1: Heart Radio podcast with twenty three in me. This is
Speaker 1: the show that explores how DNA is changing our lives
Speaker 1: and the world around us. Today we're gonna get the
Speaker 1: very latest information on Parkinson's disease. In roughly one million
Speaker 1: Americans will have been diagnosed to be living with this disease.
Speaker 1: We get about sixty new diagnoses every year. And we've
Speaker 1: gathered this conversation with a full range of people who
Speaker 1: are knowledgeable of, impacted by, and working toward the eradication
Speaker 1: of this disease. We have in the room with me
Speaker 1: right here, Leila Ali a former World Championship professional boxer
Speaker 1: twenty four and OH record twenty one knockout. She's an author,
Speaker 1: she is a television host, she is a health and
Speaker 1: wellness expert with her own product line, and she is
Speaker 1: of course the young his daughter of Muhammad Adli, who
Speaker 1: lived for over thirty years with the disease. He felt
Speaker 1: like it made him even stronger to show people like
Speaker 1: I have this disease, but I'm still gonna come out.
Speaker 1: I'm not gonna hide. Nothing's gonna stop me. We have
Speaker 1: Debbie Brooks with us. She is the co founder and
Speaker 1: executive vice chairman of the Michael J. Fox Foundation, working
Speaker 1: to deployed capital and innovative ways to move the needle
Speaker 1: on this disease. I've come to appreciate the Parkinson's patients.
Speaker 1: When this disease lands in their lap, They're likely going
Speaker 1: to have a lot of good years in front of them,
Speaker 1: but there are so many things they can start to
Speaker 1: do right away that can set that the vector in
Speaker 1: the best posture. We have. Dr Andy Singleton, a neuro
Speaker 1: geneticist senior investigator at the National Institute for Aging, which
Speaker 1: is part of the National Institutes for Health in i AGE.
Speaker 1: Just from talking with patients, you see so much benefit
Speaker 1: from the things that they pursue around exercise and dance
Speaker 1: and yoga and doing the cross world and maintaining an
Speaker 1: active lifestyle. And later on in the conversation, I'll be
Speaker 1: talking to someone currently living with the disease. Jimmy Choi
Speaker 1: three time American Ninja Warrior, an athlete, a motivational speaker,
Speaker 1: and a Parkinson's advocate. I was told that I would
Speaker 1: be in a wheelchair when I'm in my forties. I'm
Speaker 1: far from being in a wheelchair. So I'd like to
Speaker 1: start with Andy and Debbie especially to just kind of
Speaker 1: lay the foundation down of what is Parkinson's and share
Speaker 1: more numbers of who's affected, but also how how many
Speaker 1: are at risk and why this is such a threat
Speaker 1: that needs serious proactive management. Can one of you take
Speaker 1: us into the basics of Parkinson's. We believe there are
Speaker 1: around a million people affected with Parkinson's disease in North America,
Speaker 1: and estimates suggest around six million people affected worldwide, although
Speaker 1: that's probably a really gross underestimate. It's it's far more
Speaker 1: people than that. I think what's particularly concerning is, of course,
Speaker 1: our population is graying right where living longer, and the
Speaker 1: proportion of people who are over fifty, over sixty, over
Speaker 1: seven is increasing, so the number of people affected by
Speaker 1: age related disorders will also increase, and of course Parkinson's
Speaker 1: diseases an age related disorder. The biggest risk factor is
Speaker 1: his age. Can you define what Parkinson's is? Many of
Speaker 1: us have an image of tremors. We've known some world
Speaker 1: famous and celebrity figures who've suffered from it. Can you
Speaker 1: just lay down an elementary introduction to how the disease
Speaker 1: even works and what its symptoms are, so we don't
Speaker 1: really know how the disease works. When you think of
Speaker 1: the disease, you think of what a patient looks like,
Speaker 1: and I think one of the first things that you
Speaker 1: notice is that the patient looks stiff, they're slow in movement,
Speaker 1: they often have tremor, so these movement disorders the first
Speaker 1: thing you notice. But when you talk to anyone with
Speaker 1: Parkinson's disease, you realize there's so much more to it
Speaker 1: than just the movement sort of. There's lots of other
Speaker 1: things that affect p D patients. Depression, some issues with
Speaker 1: memory and thinking, other kind of autonomic and disautonomic features
Speaker 1: that affect all sorts of activities of daily living and
Speaker 1: quality of life. The diseases and age associated disease. So
Speaker 1: the older you are, there your risk. And with a
Speaker 1: typical onset in the fifties or sixties something like that,
Speaker 1: it's a slowly progressing disease typically, so patients will begin
Speaker 1: with some kind of feature like a tremor or something
Speaker 1: that can seem quite benign at first, but it's an
Speaker 1: insidious disease and that it will just continue to progress.
Speaker 1: There are some treatments that help to deal with the symptoms.
Speaker 1: So they helped to mask or affect some of the
Speaker 1: symptoms that you most commonly see in Parkinson's disease. But
Speaker 1: there's no disease modifying treatments that the disease will march on.
Speaker 1: There's no treatment yet to halt or slow the disease.
Speaker 1: And Debbie, what is the Fox Foundations perspective on Parkinson's
Speaker 1: and where the disease is today and where the battle
Speaker 1: against it stands well. I think one of the things
Speaker 1: that Andy mentioned, which is we don't have treatments that
Speaker 1: really address the underlying disease course that remains the greatest
Speaker 1: unmet need for patients, and so our organization is really
Speaker 1: focused on how can we, in partnership with patients work
Speaker 1: together to accelerate progress. And even though the disease is
Speaker 1: slow moving over time, patients are really struggling with more
Speaker 1: and more unmanaged elements of the disease and it becomes overwhelming.
Speaker 1: If you know one person with Parkinson's disease, you know
Speaker 1: one person with Parkinson's disease. It's really highly variable from
Speaker 1: person to person, and so how do you bring together
Speaker 1: a package of needs for one patient versus the next
Speaker 1: and put an organizing principle around these things so that
Speaker 1: you can advance progress. I want to talk a bit
Speaker 1: about what that experience is, and Leila would turn to you,
Speaker 1: because Debbi mentioned is a slow moving disease and it
Speaker 1: progresses over time, and your father lived this disease for
Speaker 1: just over thirty years. What do you remember of the
Speaker 1: moment from your life where you were aware that something's
Speaker 1: happening with your father. It's all a bit of a
Speaker 1: blur in terms of when I first knew that he
Speaker 1: had the disease. I remember probably being about seven years
Speaker 1: old when I noticed a change in him with the
Speaker 1: tremors and a little bit of a slurred speech. And
Speaker 1: you hear kids in school saying, oh, your father has
Speaker 1: brain damage and things like that, but I didn't really
Speaker 1: understand whether he did, he didn't. He had a disease.
Speaker 1: You know, as a kid that young, you don't really
Speaker 1: understand even what a disease is. But I do remember
Speaker 1: getting older, maybe when I was twelve thirteen, when I
Speaker 1: really started to understand that he had a progressive disease Parkinson's,
Speaker 1: and that he started changing more and more over the years.
Speaker 1: I just remembered him always never wanting us to feel
Speaker 1: sorry for him and explaining to us like he would
Speaker 1: just say, oh, it's just my hand, it's just shaking,
Speaker 1: but I'm fine. You know, everything else is fine. And
Speaker 1: in terms of how your family operated and his role
Speaker 1: in the family, over time, as the disease made progress
Speaker 1: in his body, did that further effect, like how did
Speaker 1: it show up in the family. Well, my parents divorced
Speaker 1: when I was young, so I didn't actually live with
Speaker 1: my father, but I would see him probably every three months,
Speaker 1: so you notice changes even more when you're not there
Speaker 1: every day. I would see him and say, okay, seems
Speaker 1: a little worse as the years went by. And for
Speaker 1: your own children, did they get a chance to interact
Speaker 1: with him, did they have any observations they did? My
Speaker 1: daughter Sydney had a really special connection with my father.
Speaker 1: Sydney is eight years old, and ever since she was
Speaker 1: a baby, she used to go to him and he
Speaker 1: would hold her. And a lot of times children were
Speaker 1: scared of my father because his energy was just so strong,
Speaker 1: and then his hands were trembling tremors. He has big hands,
Speaker 1: the big man, and she just was glued to him
Speaker 1: at all and she would like touch his face and
Speaker 1: he noticed too, like wow, she's not afraid of me.
Speaker 1: But she would kiss him and hug him. So they
Speaker 1: really had this spiritual connect. And I remember one day
Speaker 1: we came to his house and he was having acupuncture
Speaker 1: and we were like, wait, wait, don't go in there
Speaker 1: right now. He's got all these needles, like that's gonna
Speaker 1: be scared. But she ran in there and didn't care.
Speaker 1: She hopped right on in the bed with him. And
Speaker 1: I was like, okay, this one special that was It
Speaker 1: was great to see. Can you describe how you fit
Speaker 1: into the family? And so the trade you from him.
Speaker 1: So I'm the youngest girl in the family and I'm
Speaker 1: the only one that decided to become a boxer. Now,
Speaker 1: my family was not surprised when I announced to them
Speaker 1: that I was gonna go pro. My father didn't like it.
Speaker 1: We tried to talk me out of it because it
Speaker 1: wasn't antil I was about seventeen that I saw women's
Speaker 1: boxing for the first time. I was like, had this
Speaker 1: plan and I saw women's boxing, and I was like,
Speaker 1: how did I not know women boxed? And that's when
Speaker 1: I first realized that it was in me. I hadn't
Speaker 1: even participated in sports up until that point, and I
Speaker 1: remember thinking like, oh, was everyone going to think? And
Speaker 1: a year later, I was training kind of in secrecy
Speaker 1: after school after work, and I told my dad and
Speaker 1: he was just like trying to talk me out, and
Speaker 1: he's like, what's gonna happen if you get in the
Speaker 1: ring and knocked down or you get knocked out or
Speaker 1: I was like, well, I'm gonna do what you did.
Speaker 1: I'm gonna get back up. And then if he finally
Speaker 1: got frustrated and said what was really on his mind?
Speaker 1: He says, not for women, it's not for you. It's
Speaker 1: too hard. And I said, you know, I understand that, Dad,
Speaker 1: but this is what I've decided to do. So he
Speaker 1: supported me throughout my career. But I knew he was
Speaker 1: afraid because he always said that Parkinson's he didn't feel
Speaker 1: came from boxing. But I think that he still was
Speaker 1: afraid of just me getting hurt in general, or who
Speaker 1: knows what was really in the back of his mind,
Speaker 1: and that persistence it seems evident in how he continued
Speaker 1: to live with Parkinson's in terms of continuing to travel
Speaker 1: doing his humanitarian work. From your experience and exposure to him.
Speaker 1: Was that a conscious choice to get back up off
Speaker 1: the floor and kind of keep pushing. Absolutely everything he
Speaker 1: did was conscious and intentional and had purpose. So he
Speaker 1: was adamant about the fact that boxing was just his
Speaker 1: platform to do what he was really put on this
Speaker 1: plan to do his humanitarian work, and he felt like
Speaker 1: it made him even stronger to show people like, I
Speaker 1: have this disease, but I'm still gonna come out. I'm
Speaker 1: not gonna hide. Nothing's gonna stop me. This is obviously
Speaker 1: a part the plan. He never sat around and felt
Speaker 1: pity for himself. He didn't want other people too, because,
Speaker 1: trust me, it was hard. It was hard traveling that way,
Speaker 1: having hundreds of people crowding around you all the time
Speaker 1: signing an autograph. How much more energy that took him
Speaker 1: to do and look everyone in the eye and make
Speaker 1: them feel special, picking up babies, doing all of that
Speaker 1: all while having this disease. And I know it was tiring,
Speaker 1: but it just showed me the will of a man
Speaker 1: to get through all of that and to continue traveling
Speaker 1: and doing his humanitarian work. He literally signed his own
Speaker 1: fan mail, but he would get thousands of pieces of
Speaker 1: males and he would love to stead at this big
Speaker 1: large table in his office and sign each piece of mail,
Speaker 1: just watching that how much he loved people, he loved
Speaker 1: to give back, and he's just like, Wow, Yeah, I
Speaker 1: was so proud of him in so many ways. I
Speaker 1: want to bring Indian Debbie back in What do we
Speaker 1: know about the origins of this disease, about his genetic origins,
Speaker 1: about its environmental or at least what hence do we have.
Speaker 1: We know so much more than we did really. When
Speaker 1: genetic investigation started in this disease, which was back in before,
Speaker 1: we thought there was no genetic component to the disease whatsoever,
Speaker 1: or if there was, it was incredibly rare. That's changed
Speaker 1: completely over the last twenty years. First of all, with
Speaker 1: the discovery of of mutations that cause disease. You know,
Speaker 1: if you carry them, you're going to get disease. Those
Speaker 1: are generally pretty rare. But with the understanding in the
Speaker 1: last ten years or so that there are myriad genetic factors,
Speaker 1: common factors that we all carry that change your risk
Speaker 1: for disease. So we know Parkinson's is a genetic disease,
Speaker 1: but we also know it's an environmental disease because genetics
Speaker 1: isn't deterministic genetics doesn't drive all of your risk for
Speaker 1: a disease, and what else is there apart from chance
Speaker 1: and the environment. So we really think of it as
Speaker 1: a typical complex disease where your risk is brought about
Speaker 1: by a combination of genetics and how you live your life,
Speaker 1: and what other questions are we asking to try to
Speaker 1: narrow that set of genes we're looking at, or that
Speaker 1: set of environmental factors that may trigger those genes to
Speaker 1: flip the switch onto the disease. As it turns out,
Speaker 1: I think genetics is a lot easier to investigate than
Speaker 1: the environment. I think our genomes huge, three billion base pairs,
Speaker 1: but it's finite, it's three billion. Whereas your environment. You
Speaker 1: think about all of the things that happened to you
Speaker 1: during your life and how much of them happen, and
Speaker 1: that's so much more complex and so much harder to
Speaker 1: measure actually than genetics. So I think that a lot
Speaker 1: of us are trying to take hints from genetics, from
Speaker 1: the biological processes that we see affected by genes that
Speaker 1: confer risk for disease, and ask the question do those
Speaker 1: tell us anything about environment? And of course there are
Speaker 1: lots of things that have been associated with environment and
Speaker 1: risk for disease over the years, narrowing down that complexity,
Speaker 1: trying to bring some order to it. I think, Debbie,
Speaker 1: that's what the Michael J. Fox Foundation has been trying
Speaker 1: to accelerate in terms of how you're using your money
Speaker 1: and how you're operating in the philanthropic space. Can you
Speaker 1: talk about first how you came to this world and
Speaker 1: then and give us an introduction to what the Foundation's
Speaker 1: approaches and how it's different. Sure, of course we're started
Speaker 1: by a patient also, Michael Fox, who himself has now
Speaker 1: been living with the disease for twenty nine years, and
Speaker 1: when he was public and was called into action and
Speaker 1: just was motivated by the way one of the first
Speaker 1: people he spoke with was Mohammed and so they weren'tindered
Speaker 1: spirits around this. And but Michael's sense was as a patient,
Speaker 1: what could he do and what could more people do
Speaker 1: to galvanize an effort to elevate Parkinson's as a field
Speaker 1: of study and to just bring greater awareness. And so
Speaker 1: we didn't really have much more of a roadmap than that,
Speaker 1: what's the greatest on met need and what can we
Speaker 1: do to move the dial in that regard, and so
Speaker 1: what we started out with was, well, let's try to
Speaker 1: raise some money, and then we got to figure out
Speaker 1: the smartest way to spend end it. And my background
Speaker 1: was more from business and finance, and that was a
Speaker 1: good fit for me. I was practiced at thinking about
Speaker 1: how to use capital, how much risk to take, and
Speaker 1: so we really set out at the beginning saying, no
Speaker 1: matter how much money, how are we going to decide
Speaker 1: the smartest way to spend it. The philanthropy in disease
Speaker 1: space is minuscule in some ways in comparison to what
Speaker 1: the government spends and what pharmaceutical companies spend. If you're
Speaker 1: going to have a smaller relative amount, you have to
Speaker 1: really think about what's the most exponentially impactful way to
Speaker 1: spend it. As we've raised more and more money, we've
Speaker 1: put it to work aggressively, mostly trying to do the
Speaker 1: things that other money won't do. And that's often trying
Speaker 1: to see all these things are being tried, but what
Speaker 1: makes us keep coming up short? And some of the
Speaker 1: things are to take ideas that are kind of an
Speaker 1: early stages and help move them over the kind of
Speaker 1: complications of getting out of this is interesting science to
Speaker 1: what kind of science and what's the last bits of
Speaker 1: data we need to know that this actually can be
Speaker 1: turned into a treatment. That's an uncommon place for capital
Speaker 1: to be available when it comes to taking aha moments
Speaker 1: in a lab all the way to the drug store shelf.
Speaker 1: And so we did pick that sweet spot. How do
Speaker 1: you pick up things when they're ripe and make sure
Speaker 1: there's enough additional data around them so a pharmaceutical commony
Speaker 1: you will pick it up. And then the second thing
Speaker 1: is we'd like to really understand how people get this
Speaker 1: disease and what the disease really is. And even though
Speaker 1: it's been described for over two hundred years, we really
Speaker 1: just describe the symptoms. We don't really know enough about
Speaker 1: what's going on underneath. One of our beliefs has been
Speaker 1: let's do what we can't actually study it in the
Speaker 1: patients themselves. It's not that nobody thinks to do that,
Speaker 1: it's just it's very expensive and it's hard. We've built
Speaker 1: as a platform to engage with hundreds of thousands of
Speaker 1: patients to really bring them into the research process as
Speaker 1: participants in research by providing information, including in some cases
Speaker 1: their genetic samples, but also to be part of the
Speaker 1: living body of knowledge around what does this disease look like?
Speaker 1: And that's particularly important when you have a highly variable
Speaker 1: disease like Parkinson's. You need a lot of people, need
Speaker 1: scale to really gather the insights you're hoping for. You know,
Speaker 1: there's a principle that's underneath that approach that I've heard
Speaker 1: in other circles and more activist circles that says people
Speaker 1: closest to the problem should be closest to the solution.
Speaker 1: So congratulations on making the simple scalable in that sense,
Speaker 1: she'd work in advocacy for health and wellness in general.
Speaker 1: Where does that come from for you and what exactly
Speaker 1: are you doing well? When I decided to become a boxer,
Speaker 1: I went on this journey and I was like, Okay,
Speaker 1: it's about what I put in my body hot I
Speaker 1: think the rest that I get everything my mental state.
Speaker 1: That's what inspired me because I saw the change I
Speaker 1: transformed my body in my mind. I became an elite
Speaker 1: athlete just by making my mind up to do so
Speaker 1: and being consistent. Then when I had children, I started
Speaker 1: just doing more research on organic food and na GMOs
Speaker 1: and just really immersed myself in that world then a course,
Speaker 1: knowing that we have all these epidemics that are heart
Speaker 1: disease and diabetes and all these things that come from
Speaker 1: lifestyle choices a lot of the time, so people really
Speaker 1: need information, and they're just overwhelmed by supposed to eat
Speaker 1: this or don't eat that, or this is healthy soil
Speaker 1: that's not. In Every season there's a new trending diet
Speaker 1: or workout, and you gotta filter through it. But I
Speaker 1: try to encourage people to keep it simple. Nobody ever
Speaker 1: argues that you shouldn't need more vegetables, you shouldn't need
Speaker 1: clean you know, I don't care if you're vegan or
Speaker 1: if you're doing keto or paleo, whatever it is, because
Speaker 1: our bodies are always constantly working on our behalf to
Speaker 1: try to keep up with everything that we're doing. I
Speaker 1: just encourage people to go on a journey with me,
Speaker 1: and I know that a lot of people just aren't
Speaker 1: educated about what they should and shouldn't beating. I fear
Speaker 1: in life is to feel like I didn't do the
Speaker 1: best that I could to take care of myself, because
Speaker 1: we only have one life to live one body. Of course,
Speaker 1: I'm not in control of outcome of everything, but I
Speaker 1: am in control of I put in my body and
Speaker 1: what I choose to have in my environment. The role
Speaker 1: of well being healthy exercise has come up in some
Speaker 1: of the research. I'm talking with Jimmy Choy later about that,
Speaker 1: doctor Andy or debbut or both. What do we know
Speaker 1: about this, the role of exercise and overall healthy lifestyle
Speaker 1: choices that technically help slow the disease or at least
Speaker 1: help people live with it with a bit more comfort
Speaker 1: and confidence. I think you hit on it there at
Speaker 1: the end, which is I think that it helps people
Speaker 1: live with it in a more functional way, helps them
Speaker 1: be more comfortable with the disease. I think that exercising
Speaker 1: your body, exercising your mind, they have to be good things.
Speaker 1: They have to help you deal with the problems that
Speaker 1: you're facing with a complex disease like this. I think
Speaker 1: the amount of research that's in this area is small,
Speaker 1: It's not as large as we like it to be.
Speaker 1: But just from talking with patients, you see so much
Speaker 1: benefit from the things that they pursue around exercise and
Speaker 1: dance and yoga and doing the cross word and maintaining
Speaker 1: an active lifestyle. There is a component to Paarlkinson's disease
Speaker 1: that affects the way that a patient thinks and processes information.
Speaker 1: And I think if you practice the skill of thinking
Speaker 1: and processing information, you're protecting yourself to a certain degree.
Speaker 1: I've come to appreciate the Parkinson's patients when this disease
Speaker 1: lands in their lap, They're likely going to have a
Speaker 1: lot of good years in front of them, but there
Speaker 1: are so many things they can start to do right
Speaker 1: away that can set that the vector in the best posture,
Speaker 1: and so things like healthy lifestyle choices, and they're not
Speaker 1: super specific, as Laylis speaking, it's simple things. A good
Speaker 1: heart healthy diet is a good brain healthy diet. Maintaining
Speaker 1: a social network is also helpful for mental acuity. There
Speaker 1: these things really come together, and I've been appreciating more
Speaker 1: and more that any disease of aging, it's almost the
Speaker 1: time of life where you need to be the healthiest.
Speaker 1: We think of that as oh, in our thirties or
Speaker 1: in our forties, we really want to be healthy, but
Speaker 1: actually have come to appreciate it when you turn sixty,
Speaker 1: and that's when you really need to get serious about
Speaker 1: a really holistic sense of what healthiness is. And it's sleep, exercise,
Speaker 1: functional diets, social worlds, even frame of mind, optimism. These
Speaker 1: things they can make a big difference, Leila. I'm thinking
Speaker 1: about your father's experience from what I could see from
Speaker 1: a very distant outside, and he seemed to have some
Speaker 1: of those elements, the optimism, big family, and a lot
Speaker 1: of people around the world who loved him, and he's
Speaker 1: staying engage in the world. Could you, from your closer
Speaker 1: perspective see the effects of that on how he approached
Speaker 1: this disease. Definitely, my father, it really helped all the
Speaker 1: love that he had around him. Obviously, just everywhere he
Speaker 1: went he got a standing ovation. People would come to
Speaker 1: tears and he loved it. Trust me. We'll be driving
Speaker 1: down the street and he's like watch this. Watch this.
Speaker 1: They roll down the window and just wait for the
Speaker 1: person next to them to notice, Oh my god, it's
Speaker 1: Muhammad Ali. But then just all the love of all
Speaker 1: of his children and talking to him, interacting with him.
Speaker 1: But I mean, you know, we still do puzzles with him.
Speaker 1: He's to draw, he'd liked to look through mad magazines,
Speaker 1: you know, and just really keep his brain going. And
Speaker 1: we're human beings were meant to be touched and loved
Speaker 1: and have those relationships and things like that. So it
Speaker 1: definitely as a holistic point of view, what is the
Speaker 1: role of genetics, And that is probably back to Andy
Speaker 1: as the neuro geneticists around the table here, but people's
Speaker 1: understanding of their own genetics. Where the science is in
Speaker 1: getting a little closer to understanding how this disease operates.
Speaker 1: Where do we stand with that? Yeah, the science is incredible.
Speaker 1: The pace of discovery is really amazing. I mentioned that
Speaker 1: we had no genes or no mutations that cause disease
Speaker 1: back in ninety six. The first was discovered in ninety seven,
Speaker 1: then there was slow winds over the next few years.
Speaker 1: The most recent analysis of Parkinson's patients included somewhere in
Speaker 1: the region of about sixty thou patients and one and
Speaker 1: a half million people without disease. So the genetics of
Speaker 1: those folks and that's led us to ninety risk factors
Speaker 1: for ease genetic risk factors for disease. We've gone from
Speaker 1: zero to somewhere in the region of a hundred over
Speaker 1: the space of twenty years, and that pace of discovery
Speaker 1: is just getting faster and faster and faster. There are
Speaker 1: a couple of reasons. Of course, why do we look
Speaker 1: for genes that cause or contribute towards disease? First is prediction.
Speaker 1: Can you look at someone's genetics and make a prediction
Speaker 1: for their risk for a disease. The second and kind
Speaker 1: of more traditional approach has been, if you understand genetics,
Speaker 1: you know what flavor of a gene or what type
Speaker 1: of a gene is involved in the disease process, so
Speaker 1: you can begin to put together networks of those genes
Speaker 1: and pathways and biological processes that actually are the disease itself,
Speaker 1: the processes of the disease itself. So if you understand
Speaker 1: those processes, you're not kind of fumbling around in the
Speaker 1: dark anymore for a treatment. You're aiming a treatment at
Speaker 1: those processes. You're trying to stop the underlying disease at
Speaker 1: the molecular level. It's like turning the lights on in
Speaker 1: a dark Roman seeing was really there. Yeah, Actually, that's
Speaker 1: a great analogy. I always think of it as imagine
Speaker 1: you've got this incredibly massive building with thousands and thousands
Speaker 1: of windows, and you have to understand what goes on
Speaker 1: in that building, and each gene is kind of a
Speaker 1: window into that building. It gives you an idea of
Speaker 1: what the processes are that's going on in there, and
Speaker 1: hopefully if we understand those processes, we can stop the disease.
Speaker 1: Do you all think that understanding what goes on behind
Speaker 1: those windows is going to be increasingly the responsibility not
Speaker 1: of advanced research scientists and disease warriors and fighters, but
Speaker 1: everyday people who want to live a healthy life. There
Speaker 1: are more and more of us now who have our
Speaker 1: own genetic information and can put that to use and
Speaker 1: understanding disease and understanding not just Parkinson's disease, but every disease. Debbie,
Speaker 1: can you describe what people listening can do to help
Speaker 1: what the foundation is doing? Yeah, particularly for Parkinson's patients
Speaker 1: and their family members. If they're not already involved this
Speaker 1: and thinking about it, I hope they'll consider it. One
Speaker 1: of the ways it's kind of relevant to our discussion
Speaker 1: today is a platform called fox Insight, and fox Insight
Speaker 1: is a place where any Parkinson's patient and actually non
Speaker 1: Parkinson's patients can go online and you tell us if
Speaker 1: you're a Parkinson's patient, you tell us if you're not,
Speaker 1: and you get a series of surveys once a quarter,
Speaker 1: so four times a year. You take about a half
Speaker 1: hour forty five minutes to answer a series of questions.
Speaker 1: We already have about forty people who are in this platform,
Speaker 1: but we need a hundred thousand. I really try to
Speaker 1: encourage people to think about doing it, and I do
Speaker 1: it myself. This data is available to researchers in real time,
Speaker 1: and it's helping us part all sorts of elements understanding
Speaker 1: what patients experience, how it's changing over time, which mix
Speaker 1: of symptoms they happen to have. We actually have a
Speaker 1: partnership with twenty three me where we pay for Parkinson's
Speaker 1: patients who were enrolled in this study to actually spit
Speaker 1: into a test tube and add their genetic information to
Speaker 1: the information that they share through the surveys, which was
Speaker 1: really their lived experience of the disease, everything from what
Speaker 1: symptoms bug them to what medications they're on if they
Speaker 1: have a family history, and then we laid that DNA
Speaker 1: next to it. This is an incredibly powerful combination and
Speaker 1: enables us, particularly if we have more and more people
Speaker 1: doing it, to dig in and get more insights than
Speaker 1: we have today. I'm sitting here now with Jimmy Choy,
Speaker 1: American Ninja warrior, athlete, motivational speaker, Parkinson's advocate, and just
Speaker 1: amazing positive back can already tell from interaction with you,
Speaker 1: Thank you that you're infectious in a good way. I
Speaker 1: want to hear in your words your origin story of
Speaker 1: Parkinson's in your life. Well, I was diagnosed at a
Speaker 1: very young age. I was only seven years old. And
Speaker 1: this was back in two thousand and three. My wife
Speaker 1: and I had just gotten married and we were starting
Speaker 1: our lives together. You know, we had a mortgage, right,
Speaker 1: you were grown up, we were finally adults. Um. Back then,
Speaker 1: I knew nothing about Parkinson's. I was active and played
Speaker 1: a lot of golf. Um, so I'm gonna be stiff.
Speaker 1: Especially I refused to ride in a cart. I always walked,
Speaker 1: and I would carry forty pounds of clubs in my back.
Speaker 1: So being a little stiff after walking eighteen holes is normal.
Speaker 1: I worked in I T industry. This is back in
Speaker 1: the early nineties and the dot com boom, so being
Speaker 1: stressed at work is very common. Minor twitches here and
Speaker 1: there can explain away these things that I'm feeling. I
Speaker 1: was losing my balance, and you know, I just always
Speaker 1: thought maybe I was just not paying attention being a klutz.
Speaker 1: So everyday life can be used to explain away the
Speaker 1: things that I was feeling. How did you decide that
Speaker 1: this could no longer be explained away? Actually I didn't,
Speaker 1: someone else did. I bought life insurance, and of course
Speaker 1: what comes with the life insurance is an insurance physical, right,
Speaker 1: the insurance physics of the nurse that came and did
Speaker 1: the physical actually noticed some things about me, and all
Speaker 1: started with the dilation of my pupils being really slow.
Speaker 1: And then she explained to me that, hey, you know,
Speaker 1: I do insurance physicals on the side, and I actually
Speaker 1: just work in a neurologist office. She never said the
Speaker 1: word Parkinson's. She never said anything else except that I
Speaker 1: should have a discussion with my doctor about the things
Speaker 1: that we're about to talk about, which is all related
Speaker 1: around the way that I was moving and things that
Speaker 1: she was noticing. I wasn't swinging my arms when I
Speaker 1: walked across the room and back. My pupils are stallating
Speaker 1: really slow, and I would have stiffness and mine twitches
Speaker 1: here and there, one referral after another, a easy four
Speaker 1: to six months later and the whole diagnosis process. I
Speaker 1: was finally told that I have Parkinson's. What did they
Speaker 1: discover in your body that confirmed that it's Parkinson's. Gonna know,
Speaker 1: there's no blood test for it. There's absolutely no blood
Speaker 1: tests for Parkinson's. There is no single thing that you
Speaker 1: can do to tell you that you have or don't
Speaker 1: have Parkinson's. The most reliable thing back then was what
Speaker 1: they called a D A T scan, and it's a
Speaker 1: brain scan that essentially looks for changes in the area
Speaker 1: of the brain where dopamine is being produced. And even
Speaker 1: that is unreliable, they say that would be an indicator.
Speaker 1: And then after we look at the scans, then they said,
Speaker 1: all right, it looks like you might have something. So
Speaker 1: here's some drugs to take, and these are Parkinson's medications,
Speaker 1: which is leveodpa carbon dopa. If my body reacts positively
Speaker 1: to these drugs, then that's how I was diagnosed. And
Speaker 1: that's exactly what happened. So you find out four to
Speaker 1: six months later that you have this disease and you
Speaker 1: don't do anything about No. Absolutely, I couldn't get my
Speaker 1: head around it. I always thought that Parkinson's was for
Speaker 1: older people. I never knew that someone who was in
Speaker 1: their twenties can possibly have it. I was convinced myself
Speaker 1: that my doctors are wrong. After three opinions, all three
Speaker 1: neurologists were wrong. I could myself. I convinced myself that
Speaker 1: I would just push through it and it would go away,
Speaker 1: just like everything else. You thought you could shake it up.
Speaker 1: I thought I can just shake it off and walk off,
Speaker 1: and walk it off exactly. Wrote some dirt on it,
Speaker 1: and we're good to go. For the next eight years,
Speaker 1: I didn't go back regularly. I only went back when
Speaker 1: I needed refills, and I took the same dose of medication,
Speaker 1: no changes. Didn't even open a pamphlet that they gave me.
Speaker 1: When I was diagnosed. I went into full denial mode.
Speaker 1: How is your wife responding in this period where you
Speaker 1: both know you have this but you're doing the bare
Speaker 1: minimum to manage it. She didn't even know it first.
Speaker 1: I didn't tell her for a couple more months after
Speaker 1: I was diagnosed. Only when I decided that I would
Speaker 1: have to take medication regularly did I tell her. How
Speaker 1: did that go? I think it was shock and it
Speaker 1: was more disbelief on her part. She's like, what you're kidding.
Speaker 1: That can't be right. And then I think she took
Speaker 1: the same approach that I took because she's getting her
Speaker 1: shoes from me, and if I'm not displaying any signs
Speaker 1: that I need help, then she didn't think she needed
Speaker 1: to help at the time. Eight years later, my disease
Speaker 1: has progressed to the point where I was walking with
Speaker 1: a kne because I kept falling over. I became very interactive.
Speaker 1: I weighed actually two pounds two hundred and fifty pounds
Speaker 1: at one point, like a fifty increase in my weight.
Speaker 1: It has gotten so hard to move to this point
Speaker 1: that I just stopped moving. I would put on weight.
Speaker 1: Without the cane, I could fall. So that's how I
Speaker 1: lived my daily life. One day, coming down the stairs
Speaker 1: at home, I was carrying my then infant son, he
Speaker 1: was ten months old. I went and started proceeded downstairs,
Speaker 1: and I, of course, I fell and I tumbled down
Speaker 1: the stairs with my son. So you're desperately trying to
Speaker 1: save his life, protect him, even though the act of
Speaker 1: carrying him down the steps was putting him in danger. Absolutely.
Speaker 1: I had quite a few thoughts immediately after the fall.
Speaker 1: Number one was is he okay. Number two. I looked
Speaker 1: over my wife and my daughter both witnessed this, and
Speaker 1: the looks on their faces was probably the most disheartening
Speaker 1: thing that I can see. At that time, my son
Speaker 1: was okay, thankfully, but at the same time, I now
Speaker 1: realized that I've become a safety issue for my kids.
Speaker 1: In my mind, I've become a burden to my family
Speaker 1: because now not only does my wife have to worry
Speaker 1: about the kids, she has to worry about me. So
Speaker 1: would you do? I thought about throwing the towel. To
Speaker 1: be honest, I'm not gonna lie. It was the dark
Speaker 1: time in our lives. Frustration, anger, depression, all that stuff,
Speaker 1: simply because I couldn't move, I couldn't play with my kids.
Speaker 1: I couldn't live quote unquote normal active lifestyle. But then,
Speaker 1: after I thought about it for a little bit, I
Speaker 1: started doing research and for the first time I started
Speaker 1: to look and opened that pamphlet that I was given
Speaker 1: that I never opened. Well, I finally opened it, and
Speaker 1: then my wife and I started talking about the things
Speaker 1: that we need to learn about Parkinson's. We studied it
Speaker 1: together and we learned. I noticed that there's no cure
Speaker 1: out there. Obviously, but I also noticed that there's a
Speaker 1: lot of clinical trials available and they were all starving
Speaker 1: for participants. Nobody is signing up for these things. So
Speaker 1: that's what I told my wife. I told her, Hey,
Speaker 1: you know, we both know I'm not smart enough to
Speaker 1: find the cure, right, she should not her head immediately. Um,
Speaker 1: we obviously can't fund the cure because it takes a
Speaker 1: lot of money. So that's what I was gonna do.
Speaker 1: I was going to give up my body for science.
Speaker 1: I was going to sign up for as many of
Speaker 1: these clinical trials as I possibly can and take part
Speaker 1: in them, somewhere as simple as answering questions. Some involved
Speaker 1: experiment therapies. So I did them all. Whoever we accept me,
Speaker 1: I did it. So you go from hyper passive to
Speaker 1: hyperactive and hyperactive in my education. One thing that I've
Speaker 1: noticed doing these clinical trials is that everywhere I look,
Speaker 1: exercises mentioned all the time, and it's just it was
Speaker 1: mind blowing to me because I have a movement disorder,
Speaker 1: right and they want me to move That was crazy, right,
Speaker 1: But then it turns out that we now know today
Speaker 1: that high intensity exercise is the only treatment proven too
Speaker 1: slow progression of Parkinson's tell me what that feels like
Speaker 1: in your body. I always say that it's that moment
Speaker 1: of how do you describe it? That that moment, right,
Speaker 1: I had to build my way up. Right. I started walking,
Speaker 1: and then I started jogging and I started running. But
Speaker 1: I was doing that long enough to develop what they
Speaker 1: call the runners high, and that's essentially release of endorphins
Speaker 1: in your brains. That makes you feel happier than you
Speaker 1: really are. Right, Because let's be honest, running sucks, thank you.
Speaker 1: You know, I'm not saying runnings for everybody, but you
Speaker 1: know I was doing it because it was making me
Speaker 1: feel better, and it had to do with the runners high.
Speaker 1: But more I exercised, the better I felt. It just
Speaker 1: made me want to do more. It really did become
Speaker 1: my drug in more ways than one. It was a
Speaker 1: therapy drug. And it's also almost like narcotics because I
Speaker 1: wanted to do more and I couldn't get enough of it,
Speaker 1: so I just kept pushing. I've read your stats. I
Speaker 1: feel like I'm looking at a sports program in an
Speaker 1: old players card. He's got one ultra marathon, fifteen marathons,
Speaker 1: one hundred half marathons. American Ninja Warrior two seasons, three seasons.
Speaker 1: That up. Well. I always joke that on a playground,
Speaker 1: nobody would ever pick me. But I think that's the
Speaker 1: mindset that I have today that allows me to do
Speaker 1: a lot of these things. I mean, when I started running,
Speaker 1: I'd never run anything more than a mile, But my
Speaker 1: first five k came in two thousand and twelve, and
Speaker 1: ever since two thousand and twelve, I ran all those
Speaker 1: races you mentioned, and then some because there's also triathlons
Speaker 1: in there. There's also century bike rides in there. In fact,
Speaker 1: I was the first person on record with Parkinson's to
Speaker 1: complete a hundred mile bike ride in under five hours,
Speaker 1: and that's holding twenty miles per hour for five hours.
Speaker 1: And I was able to do these things because I
Speaker 1: kept pushing myself. I kept putting one ft in front
Speaker 1: of the other. And my model was what can I
Speaker 1: do today that's better than yesterday? Because I'm gonna have
Speaker 1: good days and I'm gonna have bad days, And on
Speaker 1: those bad days, I'll be honest with I don't even
Speaker 1: want to get out of bed. I just want to
Speaker 1: lay down and I just want to sleep, or I
Speaker 1: just want to rest. But even on those days, I
Speaker 1: have to make myself get up. I know on those
Speaker 1: days I'm not going to get more than yesterday, but
Speaker 1: at least I'm up and moving, and then when I
Speaker 1: come back the next day, if I feel better, then
Speaker 1: I go after it. Can you talk a bit about
Speaker 1: what it's taken to emotionally retrain yourself and mentally retrain yourself.
Speaker 1: One of the things that I learned is that this
Speaker 1: is not a hobby. So the mental preparedness that I
Speaker 1: have to tell myself to get after it every day,
Speaker 1: to do my regiment, whatever it is, exercise, stretching, keeping
Speaker 1: track of my medication so I can keep a log
Speaker 1: from my doctor so we can both work better together
Speaker 1: to develop the right dosage and the right treatment plan
Speaker 1: for me. Because the only person that has this data
Speaker 1: is me, and my doctors are smart enough to help me.
Speaker 1: But I have to provide that data. So you have
Speaker 1: to be disciplined to exercise, to take your meds, to
Speaker 1: keep track of what everything is, and then provide that
Speaker 1: data so that you can help yourself. So it is
Speaker 1: a lifestyle change. Does that level of commitment take any
Speaker 1: other tolls with your partnership with your wife? I mean
Speaker 1: this is a new level of dedication in your life
Speaker 1: to your own well being. But it takes a lot
Speaker 1: of energy. It does take a lot of energy. And
Speaker 1: I'll tell you what that first eight years when I
Speaker 1: was isolated, I was angry, constantly yelling at my family,
Speaker 1: arguing my wife, that's not healthy. But after I started
Speaker 1: working out and I started finding my active side, my
Speaker 1: family became my cheerleaders every event, every race. My wife
Speaker 1: is at the finish line. My kids, they were younger.
Speaker 1: You can't expect them to sit there for four hours
Speaker 1: away for me to finish marathon, but they're always there
Speaker 1: for me. When I told my wife I needed to
Speaker 1: go and train on a Saturday morning, she was more
Speaker 1: than happy to do it, and she supported me because
Speaker 1: she can see the difference in the way that I
Speaker 1: was moving, and she can see the difference in the
Speaker 1: way that I was emotionally much happier. So for her,
Speaker 1: I like to say that it made the things that
Speaker 1: I'm doing also made it easier for her as well.
Speaker 1: One of those people ask me, where do you find
Speaker 1: time to do all this exercise? Yeah, don't you have
Speaker 1: to work? You have kids to take care of. Well.
Speaker 1: One of the symptoms of people with Parkinson's is in Samnia.
Speaker 1: So when I can't sleep, I often just get up
Speaker 1: and go run midnight for ten miles, or I'll go
Speaker 1: out and go to the gym. What does it meant
Speaker 1: to you to be so public with your disease, with
Speaker 1: how you're managing it, and to, more formally, in terms
Speaker 1: of Team Fox and the Michael J. Fox Foundation, become
Speaker 1: this ambassador on behalf of other patients and families. I'll
Speaker 1: be very honest. In the beginning, it was all about
Speaker 1: self preservation. It was about me, Jimmy, Jimmy, Jimmy. I
Speaker 1: was unning and exercising, and I was feeling a lot
Speaker 1: better for myself, and I was doing these things to
Speaker 1: make myself feel better. But it wasn't until I decided
Speaker 1: to run the Chicago Marathon in two thousand and twelve.
Speaker 1: I was late to the party interns of register. I
Speaker 1: wanted to register a month before the actual event itself,
Speaker 1: but it was sold out and the only way in
Speaker 1: was through charity. And of course, if I'm going to
Speaker 1: run for charity, I'm going to find a charity that
Speaker 1: supports Parkinson's research or Parkinson's programs. I've known about Michael J.
Speaker 1: Fox Foundation, but I didn't know about Team Fox and
Speaker 1: that was really where I found Team Fox for the
Speaker 1: first time. I need defined Team Fox for Team Fox
Speaker 1: is the grassroots fundraising arm at the Michael J. Fox Foundation.
Speaker 1: They empower volunteers to create their own events and raise money.
Speaker 1: And the beauty of it is, since I got involved,
Speaker 1: of every dollar raised for Team Fox goes directly to research,
Speaker 1: so that's why it is so important. So I decided
Speaker 1: that I was going to accept this BIB and it
Speaker 1: was two thousand dollars as a fundraising commitment, and I
Speaker 1: had never fundraised that much before. I need to start
Speaker 1: telling people why I'm doing this. You go to your
Speaker 1: friends when you need to fundraise, right, you go to
Speaker 1: your family. So then they're like, well, let's call it fundraising,
Speaker 1: not borrowing money for a cast. So in that one
Speaker 1: month's time, I've raised over five thousand dollars for the
Speaker 1: Michael J. Fox Foundation, and I've reached out to other
Speaker 1: people with Parkinson's trying to do the same thing, whether
Speaker 1: or not they're fundraising for other efforts. Because now I'm
Speaker 1: part of Team Fox. And that's how I got involved
Speaker 1: with the Michael J. Fox Foundation and Team Foxon, and
Speaker 1: I met a lot of people through that process that
Speaker 1: they've become my family now, and now I want to
Speaker 1: protect my family. I want to keep doing the things
Speaker 1: that I'm doing because the more money I raised, the
Speaker 1: better it is for the cause. It's inching us towards
Speaker 1: that goal, which is to find that cure. There's many
Speaker 1: people out there with Parkinson's that aren't able to do
Speaker 1: the things that I'm able to do. So sometimes I
Speaker 1: look at it where I have to pick up some
Speaker 1: slack for some others. I have to run and move
Speaker 1: for those we can't, so that hopefully one day they can.
Speaker 1: And what started out as a selfish endeavor has now
Speaker 1: become there's a purpose in all this. And then the
Speaker 1: more that I did along the way, eventually somebody stuck
Speaker 1: a camera in front of me. Oh boy. And when
Speaker 1: I competed on my first season in American Ninja Word
Speaker 1: by the Way, my daughter dared me to try out.
Speaker 1: That's how that happened, and I couldn't say no to
Speaker 1: her anymore. For years I've told her, oh, you know,
Speaker 1: I don't have the strength and I have Parkinson's. Come on,
Speaker 1: this is the best excuse in the world. To not
Speaker 1: go on American in War. So I did it for her,
Speaker 1: and then because of my work and connection with the
Speaker 1: Michael J. Fox Foundation, it was easy to be public
Speaker 1: to share that my story with the nation and with
Speaker 1: the world. Really, how much money do you think you've
Speaker 1: raised through Team Fox activities over these years. So we
Speaker 1: mentioned all those athletic accolades. Those are all great, But
Speaker 1: what I'm truly most proud of is the fact that
Speaker 1: my wife and I have helped raise for more than
Speaker 1: four hundred now US for the Michael J. Fox Foundation.
Speaker 1: Every penny of that went directly to research. I can't
Speaker 1: be more grateful than that. What's next for you? So
Speaker 1: I'm always looking for the next physical challenge, whatever it
Speaker 1: might be. But yet at the same time, nowadays I
Speaker 1: have to be mindful about my future with my family.
Speaker 1: I've always wanted to do a twenty four hour bike ride,
Speaker 1: which means I would ride from one city to another
Speaker 1: roughly miles in twenty four hours. I've always wanted to
Speaker 1: do that, and I think I'm going to put that
Speaker 1: one back on my radar. There's a lot of endurance
Speaker 1: things that I want to go back and doing because
Speaker 1: high intensity exercise I need to keep doing it, but
Speaker 1: I need to do it with as little impact on
Speaker 1: my body as possible. Cycling is one of those ways
Speaker 1: to do in it. So who knows we're going to
Speaker 1: bring that back? Have you felt that you are pushing
Speaker 1: back the disease or that you're managing its encroachment on
Speaker 1: you better because of the regiment of the past several years,
Speaker 1: the stronger I got, the symptoms never went away, right,
Speaker 1: But I'm preparing my body to better handle it. That's
Speaker 1: how it best describe it. But am I confident enough
Speaker 1: to say that I believe that I've slow the progression absolutely?
Speaker 1: Because remember I was walking with a Kane That's right.
Speaker 1: Right now, I can run for hours, I can swing
Speaker 1: on things and fly from bar to bar, or whatever
Speaker 1: it is that you want me to do, I'll try it.
Speaker 1: I was told that I would be in a wheelchair
Speaker 1: when I'm in my forties. I'm far from being in
Speaker 1: a wheelchair. Taking things to the next level. It will
Speaker 1: always be what I'm going to try to do. The
Speaker 1: idea is that I would keep pushing right, and I
Speaker 1: would encourage others to do the same thing. So what
Speaker 1: has Parkinson's taught you? It taught me that parkinson sucks.
Speaker 1: All right, let me be clear, because I'm very positive
Speaker 1: in the way that I talked about how I live
Speaker 1: with it. A lot of times people can have the
Speaker 1: wrong sense that is he happy that he has parkins is. No,
Speaker 1: it sucks. I wouldn't wish it on anybody else, Absolutely not.
Speaker 1: But at the same time, Parkinson's has brought me some
Speaker 1: things in return that I would otherwise never have if
Speaker 1: I was never diagnosed with Parkinson's. Friends, for one, people
Speaker 1: that have met other people fighting the disease to have
Speaker 1: positive mindset. They provide me with inspiration. They provide me
Speaker 1: with friendship and guidance to how to live better with
Speaker 1: the disease. The physical activity. I'm in the best shape
Speaker 1: of my life. If I was never diagnosed with Parkinson's,
Speaker 1: who knows what shape I would be in right now?
Speaker 1: Who knows what I would be doing. People ask me
Speaker 1: all the time, Jimmy, can you imagine how much stronger
Speaker 1: you would be, how much master you would be? With
Speaker 1: our Parkinson's? I said, I would never be doing these
Speaker 1: things if I wasn't diagnosed with Parkinson's. So thinking back
Speaker 1: on it, it still sucks. But at the same time.
Speaker 1: I think there are ways that people living with Parkinson's
Speaker 1: can still live well. But it's all about perspective, and
Speaker 1: it's all about how you look at the things that
Speaker 1: you're doing every day while living with the disease. Man,
Speaker 1: thank you for sharing your story with me, with all
Speaker 1: of us, this hyper passive to hyperactive in so many
Speaker 1: ways to shift in perspective, these new choices that you've
Speaker 1: made within the context of a disease that often doesn't
Speaker 1: leave people feeling like they have very many choices at all.
Speaker 1: How can people follow your work? Find you get engaged
Speaker 1: on the internet platforms of the day. Well, I'm on
Speaker 1: Instagram j C fox Ninja, same thing on Facebook at
Speaker 1: j C fox Ninja. I could be found on my
Speaker 1: own website, the fox Ninja dot com as t H
Speaker 1: e o x ninja dot com. And I helped your
Speaker 1: listeners and come out and follow me. Wow. Jimmy's firsthand
Speaker 1: experience with Parkinson's is certainly inspiring an eye opening. It
Speaker 1: also brings to mind the importance of hearing from patients directly.
Speaker 1: On that note, I'm curious as to what you all
Speaker 1: have found to be some of the misperceptions out there
Speaker 1: to people getting wrong. What are some of the points
Speaker 1: of ignorance around this disease that we can help clear up.
Speaker 1: But I think to be touched on this earlier actually,
Speaker 1: which is that it's one disease. Really, I think that
Speaker 1: we're really beginning to understand that one person's Parkinson's disease
Speaker 1: isn't another person's Parkinson's disease. And there's this whole array
Speaker 1: of signs and symptoms and progression, and they vary incredibly
Speaker 1: from person to person. All of the work that is
Speaker 1: done now is aimed at trying to understand what drives
Speaker 1: those differences. Way is one person's parkinson is different to
Speaker 1: the others. One of the things I think about, which
Speaker 1: follows on Andy's point, is that there's not a single solution.
Speaker 1: It's human nature. You're diagnosed with the disease, and your
Speaker 1: first notion is what can you give me? How are
Speaker 1: we going to treat this? And you realize quickly in
Speaker 1: Parkinson's there's kind of good news bad news. One, we
Speaker 1: actually have some pretty good drugs that help manage the symptoms,
Speaker 1: and so for the patient, once they start taking those medications,
Speaker 1: they actually feel better and they feel there's some control
Speaker 1: with their not really prepared for is the fact that
Speaker 1: over time the disease overwhelms the value of the medications
Speaker 1: we have today. What I see as a misperception is
Speaker 1: that just because we don't have the right answer for
Speaker 1: you right now doesn't mean it's never going to be there.
Speaker 1: And these things don't fall from trees, and so one
Speaker 1: of the things we think about is that how can
Speaker 1: patients be the solution they're looking for? And it circles
Speaker 1: back around to some of our central tenets of getting
Speaker 1: patients involved in research. Sometimes those are trials where we're
Speaker 1: testing new treatments out drug trials, real interventions, and sometimes
Speaker 1: it's just participating in research in a way where you
Speaker 1: help advance the learning and the understanding and the variability
Speaker 1: and help answer questions like the one Andy put forth,
Speaker 1: which is is this one disease? This notion that it's
Speaker 1: kind of a monolithic thing, I think is probably a
Speaker 1: pretty major misconception. I'd also say that we're making lots
Speaker 1: of progress, and because progress doesn't happen in a day,
Speaker 1: it doesn't show up a new cycle in the way
Speaker 1: other things that we can break through on do. And
Speaker 1: because these are really long cycles, by the way, they're
Speaker 1: getting faster. The velocity of progress right now is so
Speaker 1: inspiring and very exciting, and it shows all over the
Speaker 1: work we see in the field. But there is a
Speaker 1: lot of excitement and things are going to change. We
Speaker 1: tend to overestimate how fast they can change in the
Speaker 1: short run, but we're underestimating how much is really changing
Speaker 1: in the matter of three to five years. And in
Speaker 1: a disease like Parkinson's where you can live decades with it,
Speaker 1: that needs a lot of progress in your potential lifetime.
Speaker 1: I think there's a lot to be excited about. And
Speaker 1: do you have a website for us or any kind
Speaker 1: of call to action or engage for our list. There's
Speaker 1: a support and of the work you're doing. Actually, I
Speaker 1: think a great resources to funnel through the Michael J.
Speaker 1: Fox Foundation. One of the things that has changed over
Speaker 1: the last ten fifteen years is that I think the
Speaker 1: Paulkinson's research community is now a real community. We're not
Speaker 1: working individually and lapsed by ourselves. We work as a community,
Speaker 1: and I think a large part of the reason for
Speaker 1: that is the Fox Foundations go through them, They'll funnel
Speaker 1: it to the right folks. Laila, I'm coming back to you,
Speaker 1: what is your call to action to people in terms
Speaker 1: of engaging in their own health and where would you
Speaker 1: send them, where would you ask them to get involved? Well, first,
Speaker 1: I want individuals to recognize that they can take their
Speaker 1: health into their own hands. You can be in control
Speaker 1: of your health. Don't think that, oh, I just get
Speaker 1: older and I'm going to get sick. I know people
Speaker 1: who are sixties seventy and in better shape than I'm
Speaker 1: in physically. They're still running marathons and they look great.
Speaker 1: Their skin is glowing, and they're mentally sharp, and they're
Speaker 1: living life with vitality. Who were living in a time
Speaker 1: where people are tired, they can't sleep, life feels so rough,
Speaker 1: they don't have vitality. They're just trying to make it.
Speaker 1: And I just want people to remember what life is
Speaker 1: really all about. For me, it's really about replenishing your health,
Speaker 1: replenishing your mindset, and then replenishing your purpose in that order.
Speaker 1: If you don't have your health, you don't have anything
Speaker 1: finding your passion because to me, that's what's gonna keep
Speaker 1: you going is having that passion. So through the Laylaally
Speaker 1: lifestyle brand, I have a website lailally dot com I
Speaker 1: have content, their tips and tools where I'm really using
Speaker 1: my story, my way of thinking, just to inspire others.
Speaker 1: And I'm really trying to reach that audience that just
Speaker 1: needs inspiration to get going. Just get going, get on
Speaker 1: the journey, take that first step, and that's really all
Speaker 1: that you have to do. And then there's just so
Speaker 1: much information out there, and you're gonna slip sometimes even
Speaker 1: I do. I mean, trust me, I love a glazed donut,
Speaker 1: you know what I'm saying. I love some peach cobbla
Speaker 1: a la mode. You know. That's why I did my
Speaker 1: cookbook Food for Life, because I'm like, I want comfort food,
Speaker 1: but I want it prepared in a healthy, nutritious way. Now.
Speaker 1: I don't have a lot of time. I have two
Speaker 1: young children. I have eleven year old eight year old husband.
Speaker 1: He's like my third child. I'm just joking. I'm just joking.
Speaker 1: I can make excuses all day long sometimes and go
Speaker 1: weeks and I'm just too tired to work out. But
Speaker 1: then when I get my mindset and I go, you
Speaker 1: know what, even if it's twenty minutes or fifteen minutes,
Speaker 1: just to get something in because it makes me feel good.
Speaker 1: It gets those good endorphins going, and it just makes
Speaker 1: a difference in my day. I want to feel proud
Speaker 1: of myself. I don't want to feel like, oh I
Speaker 1: didn't do it again. Don't have of this two items
Speaker 1: on your to do list, start with one to three
Speaker 1: things that you can actually get done. It's really just
Speaker 1: simple steps like that. I think this goal of living
Speaker 1: with vitality captures a lot of what we've heard in
Speaker 1: this episode. Jimmy Choy talks about it slightly different words,
Speaker 1: same spirit, and the way the Michael J. Fox Foundation
Speaker 1: is approaching this, the way Andy's work living with this
Speaker 1: disease with more vitality and preparing to live with it
Speaker 1: or any other symptom of aging, which hopefully we all
Speaker 1: get a chance to experience. That's part of the journey
Speaker 1: of life. So I just thank you for it, and
Speaker 1: I thank all of you all for being a part
Speaker 1: of this and sharing your story and sharing your work
Speaker 1: and helping our listeners engage in a life of vitality.
Speaker 1: I'm gonna use that. I want to dig in more
Speaker 1: on today's topics and guests. Check our show notes, and
Speaker 1: if you enjoyed the episode, share it with a friend.
Speaker 1: All your friends and be sure to leave a review.
Speaker 1: If you want more surprising stories about how we're all related,
Speaker 1: search and follow Spit on I Heart Radio or subscribe
Speaker 1: wherever you listen to podcasts. Spit is an I Heart
Speaker 1: Radio podcast with twenty three and me. I'm Barratune Day Thurston.
Speaker 1: You can find out more about me at barratune day
Speaker 1: dot com or on social media wherever Barratune Days are
Speaker 1: found