Welcome to Chasing Life. You know, probably right up there with cancer, neurodegenerative diseases are probably at the top of the list of conditions people fear the most. Talking about things like Alzheimer's disease and other dementias, ALS or Lou Gehrig's disease, multiple sclerosis.
I think part of the reason they scare us is because they happen to the brain, which many of us consider the seat of who we are, our essence. And it's also worth considering that these diseases unfold in the brain. But because the brain is a bit of a black box, we have a hard time understanding what exactly is going on in there to cause the progressive death of neurons.
Now here is something that might surprise you. The fastest growing neurodegenerative disease in the world is Parkinson's disease.
We already have 11.8 million people with Parkinson. We're now growing as a neurodegenerative disease faster than Alzheimer's disease. That should grab everybody's attention.
'That's Dr. Michael Okun. He is a neurologist specializing in movement disorders. He co-founded and co-directs the Norman Fixel Institute for Neurological Diseases at the University of Florida in Gainesville.
'He's also an author. His most recent book is The Parkinson's Plan. In it, he and his co-author, Dr. Ray Dorsey, they set out to bust the many myths surrounding the condition, and also to peer below the surface of both the brain and the body to investigate what is happening and why.
It becomes obvious, just absolutely obvious when you see the folks with disease that this isn't just a disease of dopamine. It isn't just a disease of the brain. We see it in the gut. We see it in the skin. We see it in multiple organs. And so it is super important that we ask the why. Why does it start? Why does it progress? Why does it spread?
In today's episode, we're going to take a deep dive into Parkinson's disease. What is it exactly? What are its root causes? Where does treatment stand? And are there ways to reduce your risk? I'm Dr. Sanjay Gupta, and this is Chasing Life.
Good morning. How are you?
I'm doing fine. How you doing?
Doing great. Thank you so much for having me on.
Well, congratulations on the book. As you know, I I read it, I loved it, I blurbed it. I think it's a really important book to to get out there.
I I wanted to start just by sort of understanding your backstory a a little bit. Obviously we share a love for the brain that is a connective tissue between the two of us, but what got you so interested in Parkinson's disease?
Yeah. So, you know, growing up as a Jewish kid, you know, in the synagogue, I didn't realize it, but I was around a lot of people with Parkinson. And it turns out that Parkinson disease is much more common in Ashkenazi Jewish populations. And so I think part of it was I was an observational type of kid and I was always the shortest and the quietest. But when you are the shortest and the quietest, you're always listening to people and you're always taking in the environment. And so I think for me, this was one of the things that drove me toward Parkinson, because I would look at people and I would say, Why is that? And is there something we can do to fix that?
I I noticed are you saying Parkinson or Parkinson's? Are you are you purposely not including the last S?
It can be either way. I think a lot of journals do it without the S. A lot of patient groups do it with the S. I tend to use whatever is appropriate for the group that I'm talking with.
Have I been saying this wrong?
Possibly. It really all depends on which point of view you come from. I think we just have to be flexible when we think about these things.
When we were in medical school, it seemed like we we got a pretty good explanation as to what happens in the brain of someone with Parkinson disease. When I read your book, it it was interesting because I it's not a disease that I treat as a neurosurgeon myself specifically, but it really upended, I think, a lot of things in terms of how I thought about the disease.
The idea that we think of it as a as solely a brain disease. And I think for a long time it seems like there have been other paths towards how people may potentially develop this disease. There seems to be a genetic component, but for the vast majority of people, that does not seem to be the case. It's not their genetics as maybe as much as it is their environment. These are I mean, these are big ideas, Doc, in terms of actually thinking about this disease. So I'm curious, you're a doctor, you went through medical school, you're studying this disease. What made you initially decide to dig a little deeper?
Yeah, well, it it turns out that there's a lot of myths out there about Parkinson's and people think about Parkinson as just a disease of dopamine, for example. Right. And I think that it's really important that we look beyond the surface. And what's the best part about my job is going in and meeting with families, understanding, you know, what's going on. And it becomes obvious, just absolutely obvious, that this isn't just a disease of dopamine. It isn't just a disease of the brain. There's multiple brain circuits, but it's way beyond the brain and way beyond dopamine.
We see it in the gut, we see it in the skin, you know, we see it in multiple organs. And so it is super important that as we move forward, that we ask the why. You know, why does it start? Why does it progress? Why does it spread? And we really have to get past, you know, what we learned in in medical school. It's not just a disease of the brain, that's a myth.
'One of the things you talk about early on, and you use this word, Parkinson's disease epidemic. You know, a lot of times when I hear about the prevalence or even the incidence of things increasing, you look at what is happening with society overall. So for example, if a population is aging, we have older people in the population, a greater percentage, then you see more age-related diseases. That's not surprising.
So when I first heard about some of the numbers regarding Parkinson's disease, I sort of attributed it to that. But you quickly sort of say in the book, not so fast. And one of the reasons you say is that this is not happening at equal rates globally.
I'd written this book called Parkinson's Treatment, Ten Secrets of a Happier Life. And in that book, in the prologue, I used these two words, the Parkinson pandemic. All of my colleagues thought I was I was leaving the planet, like I had committed some huge sin.
And the reason that I use those words is it's really a growth globally of people that are getting a disease. And there was this drip, drip, drip, Sanjay, for many years of, this seems to be this tremendous growth in the numbers of Parkinson's. And we just kept looking the other way. It must be aging, right? You know, it must be that we're all just getting older.
But at the same time, remember, we're clinicians. We're at the bedside, we're seeing these young people with Parkinson, 20, 30, 40, and we're checking their genetics, and they don't have genetic abnormalities in many of these cases. And so it can't just be aging. And then when you look at the numbers, the numbers don't suggest that it can be represented just by aging alone.
So then we write this book called Ending Parkinson Disease in 2020, and we have this major advantage, Sanjay. And the advantage is Bill Gates. Bill and Melinda Gates funded this study called the Global Burden of Disease Study, where they gave us numbers that we could dig into. And so we dug in and we said, oh my gosh, by the year 2035, we're going to have 12 million cases of Parkinson. And then everybody suddenly went, Wait a minute, maybe we have a problem. This growth is really tremendous. And maybe there was something to this whole Parkinson pandemic idea.
Then we write the book, The Parkinson Plant. And we look at the next cut of global burden of disease numbers from the Gates Foundation. We already have 11.8 million people with Parkinson now. We're growing even faster than the numbers people were alarmed at before. We're now growing as a neurodegenerative disease faster than Alzheimer's disease. That should grab everybody's attention.
And so we have to look at the reasons why. We have to understand that only 13% of people have a single gene that is associated with Parkinson. Now there can be other multiple genes that are involved, but 13 out of every hundred have a single gene. So what about environment? What about lifestyle? What about these other things that we really need to be thinking about and digging into? And and sometimes as scientists, we end up kind of down that road where we're looking and we're really, you know, not expanding our perspective and looking at all the data as it's coming in. And so I think it's time for us to reassess where we are.
You know, it's interesting, Michael. I think philosophically, there's there's always this sort of tension with this idea that certain things are are preordained. Either because of genetics or just because of the unlucky draw, whatever it might be, you're gonna get it or you're not. It seems like just about every disease you could sort of start to argue that that's not the case. That if you dig deeply enough, maybe you don't know what it is yet, but there is something else that may be driving those people developing the disease. And I and I I I just find that interesting.
Look at the opportunity, Sanjay, that we have. We have such an opportunity now to understand, hey, we don't have to live in a world where we think it's inevitable to get Parkinson.
Why are we not thinking about primary prevention in diseases like Parkinson disease if it's not all aging? The amount of suffering that that folks have to endure with a chronic disease like Parkinson disease is really tremendous. The caregiver strain is really high. The stigma that we have, did you know 25 to 50 percent of people hide the diagnosis of Parkinson? I mean, it's crazy, right? Why should people have to hide the diagnosis that they have?
Though we have developed some tremendous treatments and made really huge strides, you know, it doesn't mean that we've gotten to that core cause. Why does it start? Why does it spread? Why does it progress?
And by us looking upstream, not always looking downstream at, oh, these are all the effects that happen. Let's walk up the stream like multiple Nobel laureates have taught us and see what it is that's causing this, and we can wipe out so much suffering globally for this generation and the next.
Diseases have causes. We need to get to the root causes. And the best treatment isn't a pill, it's prevention.
Again, I want people who are listening to get their minds around the idea that something like Parkinson disease can be prevented. Just think about that. Let that settle in for a second while I ask Michael to really define what is Parkinson disease then. Let's start with what I think most people sort of think of immediately, the physical symptoms.
Yeah, so when we think about Parkinson's, it actually is one of the most complex diseases in medicine because it has so many symptoms. It has what we call motor symptoms, so tremor, stiffness, slowness.
But it also has these what are called non motor symptoms depression, anxiety, apathy, demoralization. And when you put all that together, add in the fact we have this great pill that can treat many of these symptoms. And then we have deep brain stimulation, we have focused ultrasound, we have all of these new therapies that are coming along, as well as behavioral therapies, and they change over time when we treat someone with Parkinson's. It becomes a very complex disease.
The disease we believe could start either, you know, we call it brain first or body first Parkinson. That's the leading hypothesis. Brain first would be you get it through the air, you breathe it in, and there are these two train tracks that go straight to your brain, and they're called the olfactory or your small centers. And so could it come in that way?
And then another way is through your gut. So perhaps through bad water, through food, through pesticides and things. So so brain first and body first Parkinson. We still don't understand the causes of Parkinson, but we're now seeing this drip, drip, drip, Sanjay, of studies showing us that pesticides and chemicals and other toxins and things that are in our environment are strongly associated with Parkinson disease. And we've ignored it, partially because of the dogma, partially because of the preordained, you know, idea. But when you start to see study after study from multiple places, multiple continents, then you start to say, Huh, maybe we should rethink this.
When you say you can breathe "it" in through your nose or take "it" in through the water, what is it in this reference?
Yeah, so we're thinking about air pollution. There are these tiny particles that are smaller than the size of a grain of sand. They're two point five micrometers, these tiny little things that can be breathed in through your nose. And within those, they can be associated with metals like manganese. They can be associated with other toxins that are in the air. When we think about what's on your food, the pesticides. Pesticides weren't invented to cause disease. They were invented to get the pests off, help the crops feed more people, make sure we had less people who were hungry in the world, but at the same time we don't wash those pesticides off of our foods. And so the pesticides like paraquat that are on food.
And then water, the water that we take in, trichloroethylene, and in a fact, you know, water contaminated through the dry cleaning industry, by military bases. And we have to begin to think these toxins can get into our body.
And by the way, as a clinician, as somebody that sees a lot of folks with Parkinson, I'm absolutely embarrassed and really feel like twenty years ago when people came into my practice and said, Hey, I have Parkinson, and you know my neighbor across the street has Parkinson, three doors down somebody else has Parkinson, the the street over, seems like there's a lot of Parkinson in my neighborhood. And we would all say, including me, oh, that's probably just a coincidence, right?
And now we have data on golf courses. We have data on environmental toxins. We were not looking at clusters. And it really is something that we all should be humbled by and begin to learn. And now we are starting to focus in on clusters of disease to understand what are potential causes that increase your risk to have Parkinson. And if they're unnecessary, why don't we have the courage to remove them from the environment?
I know you've talked to Michael J. Fox. I spoke to him years ago. He developed symptoms very early. And I think he told me he had been working on a movie in Canada when he was quite a bit younger. And then several people who had worked on that movie with him subsequently also went on to develop Parkinson disease at a pretty young age. Is that does that sound right? Did he share that with you?
Yes, he's been public about this story about his own cluster of Parkinson disease. And and it's very similar to the clusters that we see and we tell these stories in this book, The Parkinson Plan, of these people who have been in clusters and been exposed. And I think when we tell stories and we are as part of the human element, as we think about our lives, we are all the product of all the stories and we need to share the stories with each other so common folks can understand what it is that scientists are starting to latch on to and starting to get concerned. And the Michael J. Fox story of his cluster of Parkinson disease is just another drip drip drip on top of that faucet.
Where are we right now, would you say, from a state of science standpoint, with regard to looking at some of these causes and effects with regard to Parkinson? Is there adequate proof or are we more on the precautionary principle sort of stage?
I believe that we're there, like we've long passed the precautionary principle. But now what we're seeing is this huge birth of researchers all over the globe that are adding to the science. The idea isn't to try to prove what we want to hear. We don't want to add to that same dogmatic preordained approach. We want to know what the science is.
We'll have much more right after the break.
Welcome back to Chasing Life. We're talking to Parkinson's disease expert. Doctor Michael Okun.
Is the United States a a a bit of an outlier with regard to incidence of Parkinson disease?
We are. If you look at the maps of the US and particularly farming maps, and we've done a lot of studies on farmers, if you're a farmer, you have a much higher incidence of Parkinson disease.
By the way, I believe farming is the number one profession of people worldwide globally. And that should also make you think about environment and disease as well. And when you think about, you know, the farming industry and in the United States, we still haven't banned paraquat. There are other countries like like Great Britain who have banned it, but they still ship it to the United States. And many other countries around the world have already banned paraquat and other chemicals associated with Parkinson. And so we're behind. But you know what? I'm optimistic.
In those places where paraquat is not used as much or even banned, do you see a change in the incidence of Parkinson?
Super interesting question. And so we now are seeing data come out of the Rotterdam study from the Netherlands. And it looks like we may see some leveling. We are seeing some data come out from Great Britain, I saw that really caught my eye here recently in the last few weeks. They banned back in like 2007 and, you know, starting to see what might be some leveling there in Parkinson cases.
And so I think that it's it's one of these things where we can deny, deny, deny, we can fight, we can have the dialog, and all these things are important. But in the end, history is going to judge us. And I want history to judge us in the right light, in the way that we looked at the data, we did what we could for this generation and for the next. And we tried to make the decisions that we can that are going to impact as many lives as we can. And we did it proactively, out in front.
So paraquat, what is it? What are the alternatives to it?
Yeah, paraquat is this pesticide. And paraquat goes very quickly to the brain and to the lungs, and it goes to a part of the cells that are called the mitochondria. And these are kind of the energy, you know, the pumping iron parts of your brain cells. And and it hits an area we call complex one. And that's super important for Parkinson, for dopamine and for some of these other circuits in Parkinson.
We have a story in the book about rotenone, another common pesticide you might find in your garage. Tim Greenamyre, who is a great Parkinson doctor, he's one of my mentors when he was at Emory. And Tim ends up studying this, showing it's associated with Parkinson, creating animal models, getting Parkinson himself, and talks very publicly in a story in Science about how he thinks he didn't protect himself as well from the exposures to rotenone.
So there are actually, you know, thousands of different directions that we can go in killing pests. We have the ability also to understand what it is about these pesticides, herbicides, and chemicals that are actually causing disease. And so there are lots of ways that we can cleverly come up with solutions.
And so degenerative diseases and cancers are so high on the list of things that cause loss of good life for Americans and people all around the world. Why not try to design these things and choose things that are going to be safer?
If if I'm not a farmer and I'm somebody who's not working at a dry cleaner or being exposed to chemicals on a regular basis, how worried should I be?
So, you know, it turns out , that that you should be pretty worried. We all are exposed to things regularly every day. And so we have what's called a Parkinson 25 in the book. 25 things you can do.
A couple of the things that you can do proactively is make sure you have a water filter, a carbon water filter, especially if you can't afford or your county won't test your water. Carbon water filter is so important to prevention of disease.
Second, if you live in an urban area or your air quality is poor, make sure that you have an air purifier in your home and in your office. Really easy way to clean out those particles that you're gonna be breathing in. Remember the nose is the gateway to the brain.
And then when it comes to thinking about pesticides, just at least wash your vegetables and your food copiously and remember that when things come off of farms, that the pesticides are on there to help that crop to grow, but you don't want to put that into your body.
And so so you should be worried and you know, and I think people are starting to get worried about these things as they learn more and they want to learn more, which is a good sign.
Yeah, I think that there is a pretty significant level of concern about these pesticides overall. I think that what is so good about the book is you sort of lay it out. You don't overstate things, but I think this idea that there may be these associations between these chemicals and Parkinson disease, I think for a lot of people it's the first time they're going to be hearing that, having believed this was just sort of a preordained thing. I had a a relative who had it. It's not that surprising that I'm getting it. But for the vast majority, more than 80% of people, this does not appear to be genetic, which I thought was really interesting. Let's go back to just, you say there is a brain first and a body first sort of pathway here. Is the sequence of of symptoms different for brain first versus body first? What would people notice?
Yeah, so it it is actually pretty interesting. And a number of years ago, there was this famous pathologist, Heiko Braak, and he talked about this idea that Parkinson starts in the gut, and everybody went nuts, like, oh, you know, like again, you're you're pushing against the preordained or the dogma. How could a brain disease start in the gut and work its way up? And he was a pathologist. And so there's been a a whole lot of exchange with experts. And what was really nice is that dialog led to this idea that, okay, well, wait a minute. It turns out that one of the first symptoms of Parkinson can be constipation. And another early symptom of Parkinson, even before tremor stiffness and slowness, they call those the the prodromal symptoms or the early symptoms. Constipation being one, acting out your dreams being another. So again, those are the sleep areas of the brain. And if you're going up from the gut, if you're going, you know, kind of from bottom to top, those are below where those dopamine cells are, right? And then smell being the third early one, right?
So people have talked about also could there be differences in the symptoms between body first and brain first, whether or not you get a tremor. You know, 20% of people don't have tremors with Parkinson disease, which is actually pretty interesting, 1 in 5. Causes a lot of folks to not be diagnosed because you think, oh, I don't have a tremor, I must not have Parkinson.
And we we should probably call it Parkinson's diseases and not just Parkinson's disease. We're probably not looking at one disease, but we're looking at a group of symptoms that together and when they respond to dopamine, we call them Parkinson's. And so it may be, and it is hypothesized, and a lot of great scientists do believe the symptom profiles are different depending on how you acquire the Parkinson. It's early days, but it is something to think about. It's also absolutely fascinating to think about symptoms like smell loss, constipation, and acting out your dreams happening way before you get any issues or challenges with tremor stiffness or slowness. That's fascinating.
'The audience is learning so much. I mean, I'm learning a ton here and I - you know, this is an area that I'm fascinated by. Can you definitively diagnose Parkinson?
You know, that is a a big fat maybe. It turns out that, you know, the best diagnosis of Parkinson traditionally has always been the examination by a neurologist, or it doesn't have to be a neurologist, but a a caring healthcare provider that's going to follow you long term, make sure you're responding to dopamine and seeing that you don't morph or change over time into something that looked like Parkinson, because even some of the Parkinson lookalikes can respond to dopamine.
This has been one of the the hardest and most challenging things in Parkinson and most humbling is when you look at even autopsy studies, and it turns out that specialists and generalists can miss one out of five times in that diagnosis. That's a lot, right? And so for those of us that think we're experts in everything, we should be eating some humble pie and and just sort of taking a step back and realizing we're not as good as we thought we were.
'When we look at the new biomarkers, they're really fantastic. So there's one called synuclein. Synuclein's in - it's one of the proteins that's in the plaques that that get all over our brain with Parkinson. And it turns out, though, that some people don't have synuclein and can have Parkinson disease in their blood and with certain genes like the LARP2 gene. So that's not 100%. And then we look at the skin biopsies, those aren't 100%. The dopamine transporters, not 100%.
So I think what we're going to see, Sanjay, and even the the MRI studies is we're going to see, that we're going to get better and better by combining the technologies together and increasing in science, we call it sensitivity and specificity. You want those numbers as high as you can to say, okay, now I'm sure you have a diagnosis of Parkinson. And I still say one of the single best things is seeing a good caring healthcare provider, somebody with experience in Parkinson or training in Parkinson would be great. And those are the people that can help to follow you over time and to be sure you're responding to dopamine and that you have Parkinson and you're getting adequate care.
Are people adequately treated though? How would you sort of gage the state of treatment or options for patients?
The idea that those four words, Sanjay, that you hear "You have Parkinson disease," when you hear those words, they're going to be absolutely imprinted on your brain that moment. We have to teach people that when we give that diagnosis, that it still should be a hopeful moment and not a moment of a death sentence, because there are so many things that we can do now for this disease, and we have so many good treatments that we really do want people to erase that myth from their brain that, you know, you have Parkinson's, just go ahead and pack your bags, you're done. It's not true.
We actually have folks who have the diagnosis with Parkinson disease who actually say they feel better, they have a better plan, they're doing better, they've never been healthier since getting the diagnosis. It was a wake up call for them. We need to teach people that there are so many things we can do, behavioral, medications, surgeries, and then there's so much hope that's on the horizon.
I think what you write about with regard to things as basic as exercise, to, obviously, the medications that you just mentioned, and even in some cases, operations in the form of deep brain stimulation, there are options for people. And I think a lot of people are going to be tuning in today who are worried about themselves or a loved one. And I think that that hope, which I saw infused throughout your book, I thought was was really important.
Look, I'm not trying to unnecessarily or unfairly worry people who are are listening. And I think that was what was so great about the book, because it's called The Parkinson's Plan. There's a plan. I mean, you've changed your life in terms of how you do certain things, I'm sure, in response to what you've learned over the last few decades, reducing your exposures, your exercise, things like that. There is a plan here in terms of what people can do. And the book is really good at that. I mean, yeah, so many times I think people are left with this doom and gloom knowledge, and then, like, what do I do with that? And I think that's just depressing.
That's not what you're saying here.
'Yeah, not at all. In fact, it's optimistic. You know, the the book, the PLAN each stands for different - the letter stands for something different. The P is prevent, the L is we need to learn why, look upstream, why it starts, why it progresses, why it spreads. The A is the amplification of our voices, and the N is the navigation of treatments, but thinking about historically where we have failed and what sort of dollars we're going to need and the investment. We only invest 2 or 3 pennies of every dollar on prevention in this country and worldwide. This is not going to move the needle, Sanjay. So we have to proportionately reinvest.
And so we talk about the investment in those four areas, the PLA and N, and then the 0, 10, 100. We need to level the rise of Parkinson 0% percent rise by 2035. We need to increase that funding by 10 times, and a 100% of people should have dopamine. We get HIV drugs and cocktails to people all over the world. Let's get generic dopamine to people so they can benefit.
So I am, like, I'm optimistic and and I think our research is going in the right directions and we just need to to rethink and I often say move those chess pieces a little bit differently and and we can be more effective in a shorter period of time. And the more effective we are, we can impact more lives.
You and your team are the leading voices in this country on Parkinson's disease. And I thank you for that. I mean, you've done the deep dives. This is how societies learn and and move forward. Obviously, you're doing the clinical work and the laboratory work, but but then you take the time to educate the masses, which is is so important. And even if people are just left with this idea that they have control, that Parkinson's disease can be preventable. I mean, that alone, I think, is is is a hugely inspiring message. And I I really thank you, Michael, for for getting it out there.
Oh no, I appreciate you and people should know that when doctors go in, we go into medicine, we choose it as a service profession. We're here to serve people and part of serving people is helping people to understand these diseases, what they can do so they're not scared, so they can be proactive and not reactive. So thank you for all you do in that arena.
Congratulations on the book, New York Times bestseller. Again, a lot to learn there. So thank you, sir.
Thank you. It's a pleasure.
That was Dr. Michael Okun, neurologist and author of The Parkinson's Plan. I really hope you learned something new from this discussion. I know I did. Thanks for joining us. Come back next Tuesday for a new episode of Paging Dr. Gupta. I'll see you then. Take care.