Aaron Goodman: Welcome to the Chemical Sensitivity Podcast. I'm Aaron Goodman, host and creator of the show. I'm a longtime journalist, documentary maker, university instructor, and communication studies researcher, and I've lived with Multiple Chemical Sensitivity, or MCS, for years.

The illness affects millions around the world, and the number of people with MCS is rising just about everywhere. Living with MCS means dealing with a range of overlapping symptoms, including fatigue, shortness of breath, difficulty concentrating, muscle and joint pain, headaches, eye irritation, confusion, memory loss, rashes, and more.

Trace amounts of chemicals and synthetic fragrances in household and personal care products, pesticides, paint, construction materials, cigarette smoke, and more can spark a cascade of debilitating symptoms. Finding accommodations can be really complicated. Dismissed by healthcare providers, employers, even loved ones, many feel misunderstood, isolated, and invisible.

This podcast aims to change that. We delve into the latest research and speak with all kinds of people impacted by MCS. You'll gain important knowledge, a sense of validation, and learn about navigating the realities of MCS. We also explore wider issues connected to toxic chemical pollution and how individuals and communities are pushing back against it and the harms it causes.

 We know there are far too many toxic chemicals produced, distributed and sold, and folks with Multiple Chemical Sensitivity as well as environmental health researchers and others, understand how chronic exposures to toxicants and single exposures to large amounts of these substances can trigger MCS.

But as someone who's lived with MCS for years, I didn't know that chemicals play a critical role in causing folks to develop Parkinson's disease, and that Parkinson's is one of the fastest growing neurological disorders in the world. 

So while this is the Chemical Sensitivity Podcast, today we're branching out a little to talk about chemicals and Parkinson’s. I think it’s validating to learn that, as we know, toxins are truly harmful and cause a number of neurological illnesses, including Parkinson’s.

So that’s what you’ll hear today on the podcast—a conversation with Ray Dorsey, a medical doctor and professor of neurology at the University of Rochester in New York State in the U.S. Dr. Dorsey focuses on examining the key role that toxic chemicals play in the development of Parkinson’s disease.

Together with colleagues, Ray wrote the 2020 book "Ending Parkinson’s Disease" and has a new book coming out soon titled "The Parkinson’s Plan." You’ll hear Ray mention how to get a free copy of his book, and I’ll share a link to his recent scholarly paper on chemicals and Parkinson’s in the show notes.

[00:03:23] Ray D.: Thanks very much for having me, Aaron. Everyone calls me Ray.

[00:03:25] Aaron Goodman: Okay, I’ll call you Ray. Thank you. So much that I really want to dive in and talk to you about your research. But before we jump in, do you want to talk a little bit about why you’re personally motivated to research the connection between environmental toxins and Parkinson’s disease?

[00:03:44] Ray D.: I’m an academic, and one of the gifts of being an academic is I get a sabbatical. About six or seven years ago, I took a sabbatical to write about Parkinson’s disease. At that time, Parkinson’s had been recently identified as the world’s fastest-growing brain disease, and I was interested in why.

One of my outstanding colleagues, Dr. Caroline Tanner—who’s both a neurologist, Parkinson’s specialist, and an epidemiologist at the University of California, San Francisco—I spent the sabbatical reading her papers over the last 40 years. She’s been quietly, diligently, persistently telling us that chemicals in our food, water, and air are likely the principal causes of Parkinson’s disease.

I read her work about pesticides. I knew a little bit about pesticides and their link to Parkinson’s disease. Many pesticides are nerve toxins, so that’s perhaps not terribly surprising. But then she introduced me to other chemicals, including a chemical called trichloroethylene.

It’s the same chemical that’s at Camp Lejeune—it’s caused cancer and likely Parkinson’s disease there. It’s the same chemical that was in Woburn, Massachusetts, depicted in the movie and book "A Civil Action." And as I read about it, I realized it’s everywhere. 

In the 1970s, 10 million Americans worked with it. It’s estimated that one in 12 workers in the United Kingdom has worked with trichloroethylene. It’s been used to do everything from degreasing metal to dry cleaning clothes to decaffeinating coffee. 

And then she also let me know a little bit more about air pollution. So in short, in essence, we I came out of that sabbatical increasingly convinced that chemicals in our food, water and air are fueling the rise of Parkinson's disease and I think likely many other brain diseases and chronic conditions for that matter.

[00:05:27] Aaron Goodman: And is this a new finding, would you say, the connection between chemicals and Parkinson's disease?

[00:05:33] Ray D.: So Dr. Tanner would say no, she'd be emphatic because she's been documenting it for 40 years and we've known for over 100 years that only about 15 percent of people with Parkinson's disease have a family history of the disease.

Thank you. Suggesting that it tends not to run in families, suggesting that it's predominantly not genetic. And Dr. Tanner and her colleagues did a great study looking at twins in 1999. And if something's highly genetic, identical twins will be much more likely to have the disease than paternal twins. And she looked and found that for Parkinson's disease that the Identical twins and fraternal twins were about equally likely to have the disease, suggesting that genetic factors were not a primary cause of the disease and that, in fact, the environment is.

And that's true for almost all the major conditions, heart disease, heart failure, breast cancer, colon cancer, lung cancer. Most of these diseases are not primarily determined by our genetics. They're primarily determined by our environment and our behaviors. And to the extent they're determined by our behaviors and our environment, they're preventable.

And so we can create a world without Parkinson's disease, at least a world where Parkinson's disease is extraordinarily rare, like it likely was when Dr. Parkinson described it in 1817. We can create a world where ALS is extraordinarily rare. We can create a world where Alzheimer's disease is much less common.

We can create a world with less brain cancer, less autism, less intellectual disabilities. If we pay attention to the chemicals in our food, water, and air,

[00:06:59] Aaron Goodman: And a lot of listeners will be thinking we will have a lot less people with multiple chemical sensitivity and chemical intolerance as well. And in your research, I wonder if you've come across any pushback or skeptics who say, and I think I came across this in your book where people say, no, the real problem isn't chemicals. It's that we can diagnose better. What have you encountered in terms of skepticism?

[00:07:27] Ray D.: A lot. Thomas Kuhn was a physicist, and he was a little bit interested in why the Earth centric model of the universe, that everything revolves around the Earth, why did that hold on for so long when it was increasingly clear that planets moved around the Sun, not around the Earth?

And he said that scientists get stuck in paradigms and those paradigms are defined by the tools that they have and by the thinking that's around them. And I think in medicine today, we live in a genetics paradigm. We have really good tools for assessing the genetic causes of diseases. And I spent 10 years of my academic career working on a rare genetic disorder called Huntington's disease.

And that disease is essentially purely genetic. If you carry the genetic mutation, you will, if you live long enough, develop the disease. If you don't carry the genetic mutation, you will never develop the disease. But in general, genetic causes are common for rare diseases or are rare causes of common diseases.

But common causes of common diseases, all the big diseases, Alzheimer's, dementia, autism, intellectual disabilities, congestive heart failure, these can't almost by definition can't be due to genetic causes because they would have been screened out over time. And so these diseases largely have their roots in the environment.

Most of my colleagues are looking for the genetic causes of Parkinson's disease. And in fact, if you look at the literature. There are six times as many papers on the genetic causes of Parkinson's disease than on the environmental ones. Even though we've known from Dr. Tanner's twin study, and even though we've known for a hundred years, that the vast majority of people with Parkinson's disease do not have a family history of the disease.

These are like failures of science. These are failures, I think of funders. I think they're failures of people like me in terms of not identifying what are the root causes of these diseases. And once you identify the root cause of the disease, you can prevent it and then you can treat it far more effectively than you can when you don't.

[00:09:21] Aaron Goodman: Has the chemical industry, if it exists as a monolith, have they had something to say about your research?

[00:09:28] Ray D.: There is a great journalist, Carrie Gillum, who writes for The Guardian and The New Lead, I believe, is her publication. And she published a paper for The Guardian, which is a British investigative newspaper, two or three years ago in which she reviewed documents, legal documents from the company that manufactures a pesticide, that company was being sued by farmers who developed Parkinson's disease. And she, in part of her research, uncovered that the chemical company knew, according to her research, about the link between pesticide and Parkinson's disease dating back to the 1960s, that they had exposed mice, rabbits, and rats to their weed killer called paraquat, and they developed features of Parkinson's disease, including unsteady gait.

And they did this in the 1960s, a full generation before academic researchers ever able to reach. of smoking until the surgeon general in 1962 concluded that smoking causes lung cancer. We've seen reports in the Wall Street Journal highlighting how social media companies knew about the toxic effects of their product, but have concealed them from the public.

We've seen this in the lead paint industry. Companies used to promote lead paint as healthy and clean, even had a young boy as the poster child for their advertisements, according to a great book called Deceit and Denial, trying to give people the false impression that their products were safe. And we know that lead, uh, leads to intellectual disabilities, it leads to lower IQs and lead levels today, because we got rid of lead in paint, lead in gasoline, lead levels today are 95 percent lower than when we were Children. So we're all smarter because we got rid of lead and paint and gasoline. I think we'd all be smarter and healthier if we got rid of a lot of pesticides, dry cleaning chemicals and air pollution in our environment.

[00:11:25] Aaron Goodman: And you talk about the ubiquity of these chemicals that these chemicals are in the drinking water and then talk about air pollution.

[00:11:33] Ray D.: Yes. If something were purely genetic or purely due to aging, you would expect to the extent that genes are random and they may not be, but the extent that their genes are random and age, if you're just for age, you'd expect a uniform rates of diseases across the world or certainly like across the United States.

But it turns out that rates of Parkinson's disease and rates of lung cancer and rates of asthma are not uniform. But there are pockets where the rates are much higher and there are pockets where the rates are much lower. Research done by Dr. Allison Willis, a Parkinson's specialist and epidemiologist at the University of Pennsylvania, came out with a map of new cases of Parkinson's disease, showing that some areas of the country twice as likely develop Parkinson's disease as others.

And if you superimpose things like pesticides, air pollution, and trichloroethylene, you get some concerning looking images. Now, more research needs to be done to link it, but that's been shown. In Canada, in 1987, the late Dr. Barbeau showed that in rural parts of Canada, the rates of Parkinson's disease and levels of pesticide use in rural areas of Canada had a near perfect correlation, I think, 0.967. Something with a perfect correlation is one. You almost never see a perfect correlation. So we've known for 40 years that pesticide use correlates strongly with Parkinson's disease, for example, similar studies have been done in France, and I believe in Israel.

[00:12:57] Aaron Goodman: And what do you make of the chemical products, whether it's household cleaning products or bath and body beauty products that are mass marketed and sold?

And we're told by regulators that they're safe. People with chemical sensitivity know that they're not because our bodies react to these, to many of these products. What do you make of the product? These kinds of products that are sold en masse.

[00:13:23] Ray D.: So do you know how the pink ribbon came to be?

[00:13:26] Aaron Goodman: Oh, I've been really interested in looking at this, the pink ribbon campaign.

So please share.

[00:13:31] Ray D.: So the pink ribbon used not to be pink. It used to be peach. A woman, Charlotte Haley was concerned because her sister and daughter had breast cancer. And she noted that the national cancer Institute had a budget of about 1.5 billion but only five cents of every dollar was being spent on preventing the disease and she wanted to bring awareness into this because we should be trying to prevent diseases were at all possible.

Announcement prevention is worth a pound of cure and so she with her husband working extra hours started pending a note highlighting the National Cancer Institute's budget and how little was going to prevent it and she had a peach ribbon and started passing these out in parking lots of grocery stores.

I used to be a box boy at Ralph's and she grocery store in Southern California and she would pass these out in the parking lot of Ralph's grocery store and she was gaining attention because she wasn't alone in her experience or in her desire to prevent diseases. Then a cosmetics company approached her about rolling out her peach ribbon to others and she said, no, no, no, I don't want anyone making money off the disease of my sister and my daughter.

I've seen this already. The company, the cosmetic company had consulted their attorney and said, we can't use the peach ribbon, but if we change it to pink, we can adopt it ourselves. And as you've indicated, and I'm not an expert in this at all, certain cosmetics are associated with endocrine disrupting compounds and have their own problems.

So what started out as a campaign by a woman with nothing but the purest of intentions to try to prevent people from suffering the consequences that her sister and daughter had suffered and to prevent diseases soon became a product of commercial companies, including companies that make compounds that are associated with their own toxicity.

And that's what we have today.

[00:15:26] Aaron Goodman: Yeah. And we have a system that is broken and under regulation is a huge problem. And how is it that we've come to this place where most of us don't know that the products we buy on the shelves are harmful? Yeah.

[00:15:39] Ray D.: I think there are a couple reasons. So first, I got to give a call out to Samantha King, who wrote this great book called Pink Ribbons, Inc.

There's also a documentary, if you don't like to read as much as I do, there's a great documentary called Pink Ribbons. So why don't we know this? I think there are two reasons. I think there are some structural reasons, and then I think there are possibly some intentional reasons. On the structural front, we have to look at what funds biomedical research.

So the United States funds more biomedical research than any other country in the world. And 60 percent of biomedical research funding in the United States comes from pharmaceutical, biotechnology, and medical device companies, and they are trying to treat the disease and we need better treatments for all these conditions.

We do, but these companies generally benefit from more people having the disease. So the more people have breast cancer, the more that they would get prescribed treatments, the more mammograms are done. There are financial incentives to utilize their adoption. Second is I think we have great tools to assess genetic risk, but we have really poor tools to assess environmental risk, or we haven't applied those tools. So I mentioned we start measuring lead in children's blood, and that led us to really realize what are the harmful effects of lead, and we do interventions, we get rid of lead in paint and lead in gasoline, and lo and behold, lead levels go down, and we can see dramatic improvements and reductions in lead toxicity.

I also think that prevention treatments are, cures are highly visible. People come up with new treatments, they win Nobel Prizes. People who prevent diseases are invisible. So you and I might be alive today because Ralph Nader got seat belts into cars. You and I might be alive today because Candace Lightner said we shouldn't drink and drive.

You and I may be alive today and not have HIV because Larry Kramer and his fellow activists said silence equals death and changed the course of HIV and made HIV both a preventable and treatable disease and oh, by the way, declining in its incidence. So I think those are all some of the structural reasons why we have it.

And then I think some of this might be intentional. And companies, uh, as I mentioned before, the social media companies, pesticide manufacturers, tobacco companies have known and been documented according to journalists and researchers about the harmful effects of their products and have deliberately sought to conceal those effects from the public.

Michael Pollan, who wrote the book, Omnivore's Dilemma, who's the brother in law of Michael J. Fox, was recently found out that there is a, again, reporting from Kerry Gilliam and The Guardian. That there's a networking site that keeps track of people who write on topics that might be not in the interest of chemical companies.

And some of these networking sites, which would profile individuals, including their family members, including their children, was being funded by U.S. taxpayers. I think we need to be awake and alert to the facts that some companies might be taking efforts to conceal the risks, the harmful effects of their product.

If we look at the incentives and the structural reasons are, and then we look at Some of the actions of companies that might be why we're a little more ignorant and I was quite frankly extremely extraordinarily ignorant I didn't even know what trichloroethylene was until dr Tanner introduced it to me

[00:18:54] Aaron Goodman: and let's loop back to Parkinson's disease for people who don't know what is happening in the brain in the body as a result of chemicals and do you classify Parkinson's as a neurological illness.

[00:19:08] Ray D.: Sure, so we'll start with basics. What is Parkinson's disease? Really no major descriptions, only extraordinarily rare descriptions of the disease until 1817 when a British surgeon named Dr. James Parkinson saw something new on the streets of London and what he saw that was new was he saw older men with a stooped posture a shuffling gait, a tendency to walk faster and to fall forward, and along with usually a shaking and the, and his hand and the hand, and he said, this tremor has long been described, but this constellation of symptoms, this is new and he was trying to figure out what was causing it.

Almost everyone thought that this was primarily a brain disease, that there are a loss of nerve cells in the brain that produce dopamine that are lost in Parkinson's disease, which led to the identification of a medication called levodopa to treat the disease. And so for the vast majority of Parkinson's existence for 200 years, everyone thought this is a brain disease.

Until 2003, a really smart German pathologist named Dr. Heiko Braak, who's still living today postulated that Parkinson's, a brain disease, didn't have its origins in the brain, but that it had its origins, he likely thought, the gut or perhaps the nose. And he said, when I look at the pathology of Parkinson's disease, I first noticed that it's first found in the smell centers of the brain, so just behind the nose, or it's found in a nerve called the vagus nerve, which connects to the gut.

And he thought, perhaps like polio, which is a virus that enters in through the gut and makes its way back to the nervous system, that perhaps A virus or something else would have a neuro invasion of the gut and then pass up through this nerve called the vagus nerve to the brain and then spread upwards to the parts of the brain that we know are affected in Parkinson's disease, a really remarkable hypothesis.

And then my colleague, Dr. Per Borghammer, in 2019 with his colleague, said that there are two forms of Parkinson's disease. There is a body first form of Parkinson's disease that begins in the gut, perhaps through things that are ingested. And a brain first form of the disease that begins in the nose or the olfactory bulb or the smell center of the brain that perhaps begins through toxins that are inhaled.

[00:21:19] Aaron Goodman: Very interesting. Clearly in your research, you argue that there have been more and more people developing Parkinson's as levels of pollution exposure to pesticides rise, and we will continue to see growth until that is addressed.

[00:21:35] Ray D.: Yeah. And so if you look at the world map of Parkinson's disease, the highest rates of disease are industrialized countries like Canada has the highest rates of Parkinson's and the lowest rates are in the least industrialized parts of the world, like sub Saharan Africa and the areas of the world with the fastest increasing rates or prevalence of Parkinson's disease are countries with increasing that have gone undergone rapid industrialization, like India and China.

[00:21:59] Aaron Goodman: Ray, is it possible for people to limit the amount of chemicals that we're exposed to? This is something that people with chemical sensitivity, we try our very best, we use air filters sometimes if we can and water purifiers. We're conscious about the products we use, what we ingest and put on our bodies, but we're often told that it's a myth that we cannot protect ourselves enough. What are your thoughts on that, please?

[00:22:27] Ray D.: So my, so first of all, thank you for having me as a guest. If anyone can't afford a copy of our book, "Ending Parkinson's Disease" they can get one for free. They just email us at info at endingpd.org. Just give us your mailing address and we'll send you a copy for free.

That's info at endingpd.org. If you can't afford a copy, you can buy one on Amazon and help us out. All the authors are donating our proceeds to efforts to prevent and the disease. So Dr. Michael Okun and I have a second book coming out in August called "The Parkinson's Plan" and in it we have the Parkinson's 25.

Twenty-five actions that anyone can take in their everyday life to likely reduce their risk of Parkinson's disease and perhaps if you already have the disease perhaps slow its progression and you actually rattled off some of the things that are on that list of the Parkinson's 25. 

So we encourage people to buy organic, we encourage people to wash all their fruits and vegetables with water and a pesticide wash and salt and vinegar might be beneficial as well. Water filters, which is what I have on my faucet at home that you can get at the grocery store, can be quite good. They have carbon filters that can reduce exposure to pesticides and chemicals like trichloroethylene.

If you live in an area of the country or area of the world with poor air quality, an air purifier can be beneficial. If your kids go to a school, you could ask that school to stop using pesticides. I didn't actually know that most schools in the United States use pesticides until a woman in California, Robin Sowell, I think her name, she dropped off her five year old child at Sherman Oaks Elementary School in Los Angeles.

He went outside and a man in a hazmat suit was spraying pesticides. He breathed in those pesticides and had an asthma attack in front of his mom and he goes, mommy, is that ever going to happen again? And she goes, no. And two years later, California becomes the first state in the union to curtail use of toxic pesticides and require that all schools notify parents in writing every year of any pesticides that they're planning to use on their school.

So I think there are lots of things we can do as individuals. And that's what the Parkinson's 25 is. pdplan.org is our new website, pdplan.org. Uh, and there are things that we can do in our communities. And I think we can, there are things that we can do in our society, all to work to prevent Parkinson's disease, to make Parkinson's disease increasingly rare instead of increasingly common.

These are fundamentally preventable diseases. If you just take a step back, you look, Wall Street Journal reports that cancer rates in the United States are increasing for people under the age of 50. This increase is occurring, it begs the question, why? Aging doesn't appear to be the explanation, they're all under 50.

Genetics doesn't appear to be the thing, because this is happening in a relatively short period of time. This is diagnosis doesn't appear to be the issue because we don't do most screening for cancers until people are 50 and this rise in cancer rates is happening at exactly the same time that smoking rates in the United States have plummeted, which we know causes cancer.

So we're having increasing rates of cancer in the United States at exactly the same time that smoking, the probably number one cause of cancer in the 1970s, 80s, and 90s is decreasing. I think it begs the question, what's causing it? And I think high on the list of suspicious characters would be chemicals in our food, water, and air.

[00:25:51] Aaron Goodman: Very disturbing. Is there any hope that there will be more stringent chemical regulation going forward? And that we will be exposed to less and less harmful toxicants.

[00:26:02] Ray D.: It only happened to people like you and your listeners and make it happen. We've seen this before. We did it with lead. We succeeded. We did it with seatbelts. We succeeded. We did it with CFCs and the ozone layer and succeeded. We did it with acid rain and scrubbed out air pollution. We did it with traffic in Los Angeles and air pollution in Los Angeles and succeeded. We have succeeded. We've done it with HIV and succeeded. We can do this. We just need to make our voices heard.

Susan Sontag, a late writer from New York City to this wonderful line. She said, "We need to be serious. We need to be passionate and we need to wake up." And I think if we're serious, I think if we're passionate and if we wake up, we can all live longer, healthier lives with much less Parkinson's disease, much less Alzheimer's disease, much less ALS, much less autism, much less brain cancer, much less breast cancer, and much less intellectual disabilities.

[00:26:57] Aaron Goodman: Why do you think it is that physicians aren't learning about the connection between environmental toxins and disease?

[00:27:04] Ray D.: I just think we're taught with an entirely different orientation. We're taught that most diseases are due to aging and genetics and perhaps behavior and not taught that our environment is a principal determinant of our health.

And if we change that paradigm, listen, I was ignorant too. I didn't even know about trichloroethane, which I think might be the most important cause of Parkinson's disease here. I am a Parkinson's specialist with all these great credentials and all these publications and I was ignorant. And I think if we wake up, we're passionate.

We can create a world where these chemicals aren't influencing them. And I think for people like me, neurologists, I can't think of a better gift that I can contribute to the future than a world where the diseases that I'm responsible for caring for like Parkinson's disease are increasingly less common, not just for the people listening, but for all people and for all generations.

And for all time, we benefit from a world freer of many infectious diseases, polio, smallpox and the like. These are gifts we've received from previous generations. It's time for us to wake up and to reciprocate and give future generations a world freer of these chemicals in our food, water, and air.

Aaron Goodman: You've been listening to the Chemical Sensitivity Podcast. I'm your host and podcast creator, Aaron Goodman.

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The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman, made possible with funds from the Marilyn Brockman Hoffman Foundation, which supports education and advocacy for MCS.

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