Q & A with Dr Ray Dorsey

as the leading neurologist in his field , Dr Dorsey discusses his book , being a Best Selling author and ALL THINGS PARKINSONS 

Transcript

SPEAKER_01 1:30

So this conversation is not just gonna be about science, it's gonna be about accountability. It's gonna be about quality of life, it's gonna be about giving people something with Parkinson's that they need more than anything. And that's all. So I give you my conversation with uh Dr. Ray Dorsey. Hey everybody, how are we doing? Um we are here today with one of the leading voices in the Parkinson's world. Um, a gentleman that I have met and has helped me greatly. Um I consider him a friend, I consider him family. Um, Dr. Ray Dorsey, thank you so much for coming on. Thank you very much.

SPEAKER_00 1:55

Tim Lockard, you're one of the leading voices in the Parkinson's community.

SPEAKER_01 1:58

Well, I don't know about that, but what I what I want to do certainly is I think you and I have spoken before, and we've we've talked about the importance of advocacy and how things start at the bottom level. Uh people's voices need to be heard. But I also think that for somebody like myself, when I was first diagnosed, I didn't quite know what Parkinson's was. Um I didn't know how I got it, I didn't know how I could fight it. So I'd like to bring things down to like a Parkinson's 101 level, and let's talk let's talk about people that just don't have uh great information about where this comes from. Now, you we believe here that only 12% is genetic, which would lead you to believe that this is possibly a man-made disease through contaminants in the air, water, soil. You know, we hear words like parapot, TCE, I'll you call it the the the right thing, what is it called? Maybe you could tell people about a little bit about where Parkinson's comes from and some of the studies that went into that.

SPEAKER_00 2:50

So um really delighted to be with you. Um so Parkinson's disease was first described, first major description was Dr. James Parkinson, who saw something new on the streets of London in 1870. And he saw six people, older men over age 50, all uh likely men, with something that he said had not been characterized in medical literature. The disease was not in the textbooks. And he saw people with tremor, astute posture, and a shuffling gait. And he described them and he didn't know what caused the disease. 200 years later, it's estimated that six million people have the disease. So you go from something not described in the medical literature, catching the eye of a 61-year-old physician on the streets of London amidst the London falls, uh, to the world's fastest-growing brain disease in just 200 years.

unknown 3:43

Well, what causes that?

SPEAKER_00 3:45

Well, we know that our genes don't change that much. And as you mentioned, there's been a great study called uh led by the Parkinson's Foundation called PD Generation. It's open to anyone who has Parkinson's disease that offers free genetic counseling and free genetic testing. And in 2024, they published the results of the first 8,000 individuals that they did genetic testing on.

unknown 4:07

Of that 8,000, 13% carry a genetic cause or genetic risk factor of the disease.

SPEAKER_00 4:14

Some of your listeners know about LARP II, the most common genetic cause of the disease, about 2 to 3% of people with Parkinson's disease, most common genetic risk factor or mutation in a gene called GBA, about 8%. That said another way, 87% of Americans, the vast majority of Americans with Parkinson's, do not carry any known genetic cause or risk factor for the disease. The principal causes of Parkinson's disease, likely for you and likely for most of your listeners, do not lie within us. They are not in our cells, they're not in our DNA, they are not in our genes, they are outside of us in our environment. So, what are these environmental risk factors that are causing people like you and many others, Ali Signorelli, to develop Parkinson's disease at such a young age, in addition to older individuals getting the disease? I think it's chemicals in our food, as we described in chapter one of our book, like certain pesticides, chemicals in our water, like this dry cleaning chemical or decreasing chemical, trichloroethylene, TCE, two carbons in black, one hydrogen in white, and three chlorines in blue, hence its name trichloroethylene. It's got a dry clinic cousin, one more chlorine atom called perchloroethylene, associated with about a 500% increased risk of Parkinson's. It's the same chemicals that contaminate the marine base cancel as June, where marines, when they were young, they were 20. Some were teenagers, were exposed to this in their drinking water, and 34 years later had a 70% increased risk of developing Parkinson's disease. This chemical and the other one can also evaporate from underlying contaminated groundwater or soil and like radon enter people's homes, schools, workplaces completely undetected. People can be breathing it in. And then outdoor air pollution, which may have been causing the cause for the first individuals that Dr. Parkinson described. When he was describing the condition 1800 London, you couldn't see across the street air quality was so bad. 1800 London air quality is the same as what's in Delhi, India today.

SPEAKER_01 6:22

Yeah, also talk about golf courses, because I know we we we've discussed golf courses. I have children that play golf, uh soccer, so obviously in schools, pesticides are used with a lot of these grounds. Um you've we've done studies about downwind, upwind, how close you live to them, what's in the soil.

SPEAKER_00 6:40

Explain a little bit about that. Yes, so uh Rachel Carson wrote Silent Spring in 1962 because she was worried about the indiscriminate use of pesticides like DDT.

unknown 6:50

She recognized that pesticides uh have benefits, right?

SPEAKER_00 6:53

And during World War II, DDT saved millions of people from getting malaria. The guy who created DDT won a Nobel Prize. But she was worried that we would use it indiscriminately without thinking about it. And so, what are some good examples of where we're not thinking about it? We routinely spray pesticides on kids' schools and playgrounds. We spray pesticides on sports fields. There are three studies: one in Italy, one in Spain, one in Scotland, that have found that soccer players in those nations have a higher risk of developing ALS or Lugaric disease, also tied to pesticides. You mentioned golf courses. My colleague, Dr. Brittany Krisanowski, and her colleague Dr. Rodolfo Savica, a neurologist at the Mayo Clinic, showed last year that individuals who live within a mile of a golf course in Rochester, Minnesota, where the Mayo Clinic is located, have a 126% increased risk of Parkinson disease. Golf courses use about five times as much pesticides per acre as do farms. And two of the pesticides that are widely sprayed on golf courses, one's called a pesticide called chlorpuripos, sprayed on apple orchards. It's estimated to cost 26 million kids, 17 million IQ points.

unknown 8:11

We're making our kids less bright by using nerve toxins.

SPEAKER_00 8:17

Another pesticide widely sprayed on golf courses, even today, is a pesticide called 2-4D, which some of your listeners will realize is a component of agent orange, which we know uh is linked to Parkinson's, and it's responsible for likely for a lot of veterans from the Vietnam War for developing uh Parkinson's disease.

SPEAKER_01 8:36

I mean, you're not, unless I'm wrong, you're not going to find a cure for a disease unless you know what caused that disease, is that right?

SPEAKER_00 8:42

Yeah, so you've been reading well. So I can't think of a single disease that we can cure medically, like with like a pill, which is I think what most people with Parkinson's want. You know, can't take something and cure it. We can do that for hepatitis C. When we figured out what caused hepatitis C, we have a pill that you can take and you can cure yourself with hepatitis C. I don't, it's I can't think of a condition that we can cure medically where we don't first know its cause. So if we identify the causes, if we do the research to identify these causes, and I think in large part that research has already been done, we can accelerate our development of new therapies by studying the effects of these chemicals in the lab in the lab in laboratory animals and screen therapeutic compounds against them.

SPEAKER_01 9:23

But I mean, you bring up hepatitis C. Hepatitis C was Parkinson's level when it was something that nobody thought there would be a cure for that. There is. So, like, if if all the contaminants in the air, the water, and the food are really what's causing this, why is it? I mean, we've been to Washington together, we we've advocated together. Why is it so hard to ban these power pot?

SPEAKER_00 9:42

I mean that's a good question for the EPA. And if we ask the EPA why they have why are they allowing a weed killer that over 70 countries, including China, have banned, why are they allowing it to be sprayed in New Jersey? Why are they allowing it to be sprayed on vineyards in New York? Uh Dr. Tanner, Caroline Tanner, my colleague UCSF showed over 10 years ago that farmers who use the pest the weed killer have 150% increased risk of disease. Dr. Beatteris and Kimberly Paul at UCLA showed that simply living or working near where paracon is sprayed is associated with a doubling of your risk of Parkinson's. You know, in smoking, some people said, well, if someone wants to smoke a cigarette, that's their business. But we found out that smoking a cigarette isn't just that person's business if I'm smoking a cigarette, it's your business too, because you get secondhand smoke and you're at increased risk for getting lung cancer. Well, it turns out that secondhand exposure to paracat is this associated risk of Parkinson's disease. We should eliminate the secondhand exposure, and quite frankly, we should eliminate the first hand exposure so we stop sowing the seeds of Parkinson's disease, so future generations like your three boys do not bear the burden of this terrible disease.

SPEAKER_01 10:56

So let's talk a little bit about this unbelievable book, The Parkinson's Plan, a new path to prevention and treatment. Um, took over two years, sorry, with your colleague Dr. Michael Oaken. Um just traveled to the country doing a book tour on it. One of the, I mean, the first couple of chapters are go into depth about the research that was done as far as what you're just talking about. What I really loved was the Parkinson's 25, which are 25 tips to help everyday life to hopefully not get Parkinson's, or even if you have it, the slow progression. And there are some cool things in there, like you drink coffee, you drink wine, organic wine. We certainly don't have time for you to go into all 25, but what are some of the other things, like briefly, like everyday person we do as far as washing your chemicals and foods?

SPEAKER_00 11:35

Yeah, so I like to read books, but I realize that most people don't. So Michael and I are on page 237, you can skip ahead, page 237 is the Parkinson's 25, and we give you 25 recommendations to slow, uh possibly slow your rate of progression if you have the disease, and to prevent yourself from ever getting it if you or if you don't have it. Um, and there's lots of pictures, so you can enjoy them. So the first one is to wash your produce, even your organic ones. Pesticides that contaminate our food supply. Remnants of pesticides are found in 20% of all common foods. Organic produce, dairy products, and meat can reduce exposure, but can still have unsafe residues of pesticides. So wash your produce at least with water and consider simple vegetable washes, vinegar, or salt solutions too. And then we give you lots of other ones, you know, talking about your diet, managing your diabetes, avoid, you can have your cup of caffeinated coffee. Check your well. If you have a if you get your water from a well, you're putting a carbon filter on your faucet today. If you get your water from a well, a well on your own property, you're putting a carbon filter on your faucet today. Because wells in rural areas tend to be contaminated by pesticides from nearby farms, and in urban and suburban areas can be contaminated by that degreasing chemical. And we talk about using an air purifier, not poisoning yourself. You are not spraying, you're listening to Rachel Carson, you're not indiscriminately using pesticides in your home and in your yard and your dry cleaning cautiously.

SPEAKER_01 13:13

I mean, the everyday person should be doing such a thing, but obviously somebody who doesn't want to develop parkins or any kind of neurological diseases or or help with the progression of parkins if they have it.

SPEAKER_00 13:22

Yeah, it's clean living, but I I you know I when I was in medical school, um my wife said we should buy organic produce, and I poo-pooed the idea.

unknown 13:32

Not anymore. Yeah.

SPEAKER_00 13:34

Because I used to think that the food we eat, the water we drink, and the air we breathe were safe or clean. That's what I thought.

SPEAKER_02 13:41

Right.

SPEAKER_00 13:42

And I I think I was wrong. And so real quick, not to catch off.

SPEAKER_01 13:46

I just want to say for everybody who's listening, every man who's listening, his wife was right.

SPEAKER_00 13:49

Yes, yes, yes, yes, it's Valentine's Day. Coming up is a good uh point to read to emphasize. Um I don't think that our food, water, and air are clean or safe. And that's why we give you these 25 actions that you as an individual can take. Most of them are free, many are inexpensive, all only a few are you know, the most expensive ones in air purify. Um so we're doing that.

unknown 14:16

But that's because we fail to protect ourselves.

SPEAKER_00 14:19

Um, and you know, what greater example of failing to protect ourselves than that we spray pesticides on kids' schools and playgrounds, and then we have the audacity to ask why one in 31 eight-year-olds have autism or intellectual disability.

SPEAKER_01 14:32

Which almost kind of makes it takes it from a health issue to almost an environmental or a lack of caring about our environment issue, normally.

SPEAKER_00 14:39

Yeah, but the health you have is a reflection of your environment in the past. The health you have today, the health you enjoy today or don't enjoy today is a reflection of your environment in the past. If we create healthy environments, we create healthy people and we reduce the burden of disease and we save money. You know, in the United States, one out of every five dollars of the economy is spent on sick care. Twenty percent of uh expenditures, GDP, is spent on sick care. What greater indictment that we are not creating a safe and healthy environment than we're spending one out of every five dollars on sick care, and that care isn't even accessible. We clearly do not have the right approach to this. We're seeing the rise of chronic diseases, we're seeing the rise of cancer of the colon in people under 50, we're seeing Parkinson's rise, we're seeing autism rise, we're seeing ALS rise, we're seeing brain cancer rise, we see one in three 85-year-olds getting with Alzheimer's disease.

unknown 15:35

All of this is unnatural. This is unnatural.

SPEAKER_00 15:39

You put a mouse in the lab and you let it age, it will never spontaneously develop Parkinson's disease, or for that matter, Alzheimer's disease. In a controlled environment. In a controlled environment. Only if you manipulate its genes or expose it to toxic chemicals, or in some cases both, will you get the disease? Which is what's happening to us and what we're getting at right now.

SPEAKER_01 15:57

So one of the things that was a huge deal a couple years ago, um and you and I, again, were in Washington and we were speaking about this, the National Parkinson's plan. For those who just recently have been diagnosed or dabbling into the Parkinson's world, what was the intent of that? What was it supposed to do? And in your opinion, why the whole? Why the lack of progress?

SPEAKER_00 16:18

Um, so uh hat tip to Ted Thompson, the Michael J. Fox Foundation. Uh they realized that Parkinson's of the world's fastest growing brain disease, affects 1.2 million Americans. The economic cost to the U.S. alone is $50 billion, half to Medicare. And they said, we don't have a federal plan to prevent the disease, to slow it, to treat it, and to cure it. And so they created uh with some outstanding uh members of Congress, including Congressman Gus Bill Rakis, Republican from Florida, Congressman Paul Tomko, just upstate from where we're sitting right now, uh, Congressman Jennifer Wexton, who has progressive supernuclear palsy, uh, a bill that requires the federal government to create a federal plan to address Parkinson's disease. That bill passed the U.S. House of Representatives 407 to 9 and unanimously passed the Senate, signed into law by President Biden. It calls for the formation of an advisory council. Um, to my knowledge, that advisory council has yet to be formally formed or uh we're hearing little drips and drives that some people are getting letters, so we're hoping there's a little progress on it, but I agree.

SPEAKER_01 17:29

At this point, it's long overdue.

SPEAKER_00 17:30

And uh these delays have costs. Cost of lives? Yes. So today, 250 people were diagnosed with the disease, and a hundred Americans died with Parkinson's disease. We need to have a sense of urgency about what we're doing. We're sitting here in New York City, not too far from we're sitting in 1987. Activists formed an organization called ACTA. And their motto was silence equals death. Because in the 1980s, silence equals death for people with HIV. The people who survived with HIV were those who lived long enough to get to AZT, long enough to get to protease inhibitors, highly effective medications for the disease. If we delays led to more people dying, we should not let we should end the suffering of Parkinson's disease, right? You know it is, as Michael J. Fox says, it sucks. I wouldn't wish it about anybody. And the suffering is immense. When I'm walking the streets of New York and I see people with Parkinson's disease, I get pissed off because I think that suffering is needless, I think it's preventable, I think it's avoidable, and we need to act with urgency to bring about the end of this largely man-made disease.

SPEAKER_01 18:43

Well, I'm glad you touched upon that because getting into the last kind of phase here of our chat, I want to talk about advocacy, and I want to just give the viewers a brief synopsis of how I met Dr. Dorsey. So, because of advocacy, I was invited to the policy forum in Washington. Um, and I wrote a whole speech, and I was supposed to talk to representatives. And I walked in the room, and I always say that even if I didn't have Parkinson's, I would have been shaking from nerves. Um, not only was there a lot of high lawmakers there, Dr. Dorsey was there, um, Muhammad Ali's wife was there, and I saw Miss Um Lani Ali outside the office, and she says, What are you holding that up for? She goes, I'm here to hear you talk. And I said, Well, this is what I prepared. She goes, put it away. She was speaking from your heart. That was the best piece of advice I could have ever gotten. And I walked in that office, and as Dr. Dorsey could probably attest, I just started bowling. I talked about my children, I put my notes down, and when I walked away, I was the talk of Washington. Um, everybody came out and said that was the most emotional speech you've ever heard, it was touching. And we're walking in the underground tunnels of going to the lunch hall, and I get a tap on my back, and it's this jungle. And he said, I just want to let you know. So he stopped crying. He said, What you just did is gonna get us to a cure and save lives. Because people need to hear your stories. That was one of the most eye-opening things that has ever happened to me since I got diagnosed.

SPEAKER_00 20:11

So in Senator Corey Booker's office, Senator Corey Booker's father had Parkinson's disease, he said uh the second worst day of your life was the day you got diagnosed with uh Parkinson disease. And the first, the worst day of your life was when you had to tell your three sons that you couldn't be Superman for a third.

SPEAKER_01 20:28

Nobody wants to do that. Nobody wants to tell their children that their dad is going to be less of a man providing for them and doing things for them. And but I promised them that I would not become a statistic, and that's why I'm here doing interviews with such great men like this. Um again, from that, we were sitting there eight months, and I got a call to go to meet Senator Corey Booker. And he said, Listen, I heard about what happened because I wanted to talk to you, and I have since formed a relationship with him. He invited me to his church the week after. I mean, it is amazing what could happen just from you using your voice. Um, and I always say to people, everybody has the right to just suffer in silence if you want to. I I don't I know what it what you go through on a daily basis, but I feel like there's always something that can be done in your comfort level within the realm of what health you're battling. Talk to the people as far as what can be done on a most basic level. I mean, not everybody's gonna have a podcast, not everybody's gonna travel to Washington and talk to congressmen and senators. What about some of the most basic things that anybody could do, regardless of how they're feeling?

SPEAKER_00 21:28

So, first of all, you're not less of a man because of Parkinson's disease. I think you're more of a man because I mean, look at Michael J.

unknown 21:35

Fox. Is he more or less because of the suffering that he's got? Is Brian Grant more or less of a person?

SPEAKER_00 21:40

Is David Spinney more or less of a person? I appreciate it. Is Larry Gifford more or less of a person? Is Dr. Sonia Madler more or less of a person? Is Tim Haig more or less of a person? Is Alice Singarelli more or less of a person?

unknown 21:51

Is Dr. Sarah Whinningham more or less of a person? Dr. Jana Reed more or less of a person.

SPEAKER_00 21:54

I think it's just people that are under 50 when they were diagnosed. Uh is people like you who

unknown 22:00

Change the course of the disease.

SPEAKER_00 22:01

The course of Parkinson's disease, the course of HIV, the course of polio, the courses of drinking and drunk, drinking and driving, those all rest in the hands of those individuals who are most directly affected by the disease. As you said, some people with Parkinson disease, they have the right to suffer in silence, and that's fine.

unknown 22:17

Which I do do on Sundays, but not every day. But when people uh it's it's a burden to have the disease, but it's a burden to be the face of the disease.

SPEAKER_00 22:24

And when people like you step forward, when people like Michael J. Fox step forward, when people like Brian Grant step forward, we should applaud them, we should recognize them, we should thank them.

SPEAKER_01 22:33

I appreciate you saying that, Doctor. Listen, I've always said to anybody who will listen, aside from therapeutics or anything else, the one thing that you need with this disease more than anything to keep you going every day is hope. It's hope. You have to hope that there's better therapeutic coming out, you have to have hope of a cure. You have to have hope that you need a Dr. Dorsey who can give you such wonderful information.

SPEAKER_00 22:53

So here's the hope. In the book, we say that by uh 2035, nine years from now, that the rise of Parkinson's disease adjusted for age is 0%. That you and me and your sons uh halt the rise of Parkinson disease by 2035. That there's a 0% rise, so that by 2036 you're gonna come back and we'll start talking about the fall of Parkinson's disease. Book it now. Diseases come and go, they are not permanent fixtures of society. We have seen the fall of stroke down 30% in the United States since 1990. We've seen the fall of HIV at its lowest level since 1990. We see the uh fall of drinking and driving, we see the fall of polio, we've seen the fall of lots and lots of diseases. We are gonna bring about the fall of Parkinson's disease. In Europe, where they got rid of a lot of these chemicals, they got rid of the decreasing chemical, they cleaned up their air, they got rid of the most harmful pesticides. The instance, the number of new cases in Parkinson's disease in the Netherlands is either flat or falling. The number of new cases of Parkinson's disease in England adjusted for age is either flat or falling. Numbers don't lie. The number of uh incidents of Parkinson's in Germany is falling. If we can bring about the fall of Parkinson's disease in Germany, we can certainly do that in the United States and we can do that around the world, and people like you are going to make it happen.

SPEAKER_01 24:10

Thank you so much, Doctor. Um, again, it it has been such an honor to sit here and talk to you and to know you. And like I said, when I met you that day, you gave me something that at certain times in your life with this disease can be tough, which is hopeful. Um just speaking to the camera. Um, talk to people that are just diagnosed. If you had to give them a parting message here, what what can they hold on to to be hopeful for with this disease?

SPEAKER_00 24:34

So I I think the course of parking disease is far more modifiable than we let on. And I think there's three ways to modify the course. The first is stop getting exposed to these chemicals that are linked to the disease. If you're a smoker and you get diagnosed with lung cancer, the first thing people are going to, doctors are gonna tell you do is stop smoking. And indeed, if you stop smoking, your prognosis is better than if you continue to smoke. If you have high blood pressure, doctors are gonna tell you stop salt intake. If you have type 2 diabetes, you're gonna diet and exercise. All those things favorably modify the course of those diseases, why wouldn't the course of Parkinson's disease be favorably modified by stop getting exposed to pesticides, dry cleaning chemicals, and uh polluted air? And so we give you 25 ways to do that in the book, and lots of other ways we can do that in our communities, get rid of the pesticides on our kids' schools and playgrounds, and we can do that as a country. Second, you've got to exercise, you gotta sweat, you've got to become Jimmy Choi, you've got to become Sarah Winningham, or if you can't do that, you can just walk to the mailbox and back. The more you exercise, the more releases growth factors which protect the remaining nerve cells. So you want to stop fueling the fire by stopping exposure to these chemicals, and you want to give those remaining nerve cells a fighting chance by exercising and sweating as soon as you can do so. And third, you just need to get really good care. And it's hard to get that care. Michael Batson and I are working on a book, giving you 10 secrets to better care, but better care makes a difference. We know that people who see a Parkinson's specialist who get the expert care that they need get better health outcomes. We need to make that more accessible. There are increasingly ways to do this. You know, through the internet, the Parkinson's Voice Project offers speech DRP for free.

SPEAKER_02 26:14

Yeah.

SPEAKER_00 26:14

Online for thousands of people. Use those things so that your voices are heard and that you speak with an intent and use it, use that intent to live a better life for you and prevent your kids and grandkids from ever getting this disease.

SPEAKER_01 26:27

Well, listen, until that next book comes out, and we're going to be sitting here talking about it again. This needs to be a staple in everyone's home. The Parkinson's plan, a new path to prevention and treatment. Dr. Michael Akun um pick it up today. It should be an encyclopedia for anybody who's suffering from Parkinson's. Thank you so much, Doctor. It was great to see you, sir. Thank you.