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Ending Parkison’s disease with Dr. Ray Dorsey

Care Coach and MagnaReady® founder Maura Horton talks to Dr. Ray Dorsey about his just released book Ending Parkinson’s Disease: A Prescription For Action

_CARE / ENDING PARKISON’S DISEASE

Dr. Ray Dorsey, a professor of neurology at the University of Rochester, has been published in leading medical and neurology journals and has been featured on National Public Radio and in The New York Times and The Wall Street Journal.

He is one of four leading brain doctors to co-author the new book Ending Parkinson’s Disease: A Prescription For Action. The book offers a bold action plan to prevent, care for, and treat Parkinson’s disease.

In their new book, Dr. Dorsey and his colleagues argue that the toxic chemicals that blanket our food, leech into our water, and float through the air we breathe are causing Parkinson’s cases to surge. It’s now the world’s leading brain disease, with cases expected to double in the next 20 years.

Ending Parkinson’s Disease: A Prescription For Action profiles patients, provides resources for patients and caregivers, and lays out action steps to put an end to Parkinson’s.

Dr. Dorsey recently sat down with Maura Horton to discuss his new book. Ms. Horton was the primary caregiver for her husband during his decade-long struggle with Parkinson’s disease. During that time, she watched him struggle to dress himself, inspiring her to invent a patented magnetic closure system for clothing. She then launched MagnaReady® . What started as the world’s first magnetic shirt is today a full range of women’s and men’s apparel.

Maura Horton: We’re living through a very strange time during this pandemic. How has the COVID-19 pandemic affected people with Parkinson’s disease?

If society
starts making
better choices,
we can get rid
of Parkinson’s
disease.

Ray Dorsey: Fortunately for my patients and me, we’ve been seeing patients remotely since 2013, so I’ve probably had the least affected practice out there. In general though, there’s a large segment of people with Parkinson’s who are underserved and this is only making their situation worse.

Horton: You’ve compared Parkinson’s to a pandemic, could you explain that analogy?

Dorsey: Parkinson’s is a fastgrowing brain disorder. No one is immune to it; it affects women and men, young and old.

Horton:
 And yet, you argue in your book that we can stop Parkinson’s.

Dorsey: We outline actionable steps that people can take to make significant changes in the environment that would end Parkinson’s. We’re not asking for anything radical, just for a ban on the most toxic form of herbicides out there; the herbicides that target weeds Roundup doesn’t kill. If we could simply get a ban on trichloroethylene, that would change the course for tens of thousands, or hundreds of thousands of people easily.

Horton: You provide addresses and numbers for letter writing campaigns and phone blitzes, but do you really believe that’s enough to overcome the power of chemical lobbyists?

Dorsey: The herbicide paraquat has been banned in the EU since 2007 because of its link to Parkinson’s, but it’s still legal in the US. I would say if 1 million people petitioned the EPA and said, “we want to ban paraquat or we’re going to vote for the next administration to make sure it’s banned,” then I wouldn’t bet on paraquat.

Horton: If the chemicals were banned, say tomorrow, how long do you think it would take for us to see a tangible change in the data?

Dorsey: It’s analogous to smoking and lung cancer. Lung cancer used to be considered a once in a lifetime disease. It almost didn’t exist. Just like few got lung cancer, few got Parkinson’s before 1817.

If you look at the graphs of smoking and lung cancer, there’s a 25 year lag. When society made smoking taboo, lung cancer rates started to fall. Similarly, with Parkinson’s I imagine it will take a generation for it to play out. The reason people are getting Parkinson’s disease isn’t because of the exposure they had last week, last month, last year, or even last decade. It’s what they were exposed to over and over many years ago that’s built up in their system. I’m sure people can recount drinking from a well, or having an airplane spray pesticide over their land, or they remember working with trichloroethylene when they were in the military.

Horton: So, for someone like me, who is health conscious and wants her kids to eat well, I’m suddenly feeling a lot of anxiety that the almonds and walnuts I’m buying are covered in pesticides linked to Parkinson’s. That’s especially troubling since my kids may have a genetic predisposition to Parkinson’s.

Dorsey: It’s great to be conscious of diet and exercise, but we need to change our policies. This isn’t about individual responsibility. The reason we have Parkinson’s disease isn’t because we have individuals who made poor choices; it’s because we have society that’s made poor choices. If society starts making better choices, we can get rid of Parkinson’s disease.

People with
Parkinson’s
disease suffer
way more than
they let on

Horton: One part of your book that I really appreciated was that you want people to open up about their suffering. My husband had Deep Brain Stimulation surgery, and it made it appear that he only had Stage 2 Parkinson’s, but inside he was much, much worse.

Dorsey: People with Parkinson’s disease suffer way more than they let on, and I think family members and caregivers suffer way more than they let on as well. We’re trying to end the silence. If we continue to remain silent and just say this is not something that will be brought out to the public, then the public can’t act. It’s great to see celebrities with early onset Parkinson’s like Davis Phinney, Brian Grant, and Michael J. Fox bringing this to light. The same for notable older people like Alan Alda and Janet Reno. They put a face on the disease, 

share their suffering, and reduce the stigma. Hopefully, people will start to act and say, “that’s enough.”

Horton: Ending the silence is a challenge. I was in it with my husband, and we definitely hid it. In hindsight, I just don’t get it why we did it. I don’t get why we were embarrassed. So, how do we change the stigma and the embarrassment, because it’s definitely there.

Dorsey: A thousand Alan Aldas need to talk about it. We’ve already come a long way. Look at the stigma pre- and post-Michael J. Fox.

I’m a neurologist and I’m here to help, but I’m not going to end Parkinson’s disease. It’s people like you who will. That is the book’s central messages. Look at breast cancer awareness; the people who changed breast cancer were sisters and mothers and daughters of people who had it. The woman who started Pink Ribbon was a homemaker in Simi Valley, California. The people who started the March of Dimes were ordinary people who mailed in dimes to President Franklin Roosevelt. The people who changed the course of HIV were homosexual men living in New York City and later in San Francisco.

Horton: Those steps to raise awareness and advance the conversation around Parkinson’s are so important. Where can people find more about what you’re doing?

Dorsey: During COVID-19, we’ve hosted a series of webinars profiling people with Parkinson’s, caregivers, and people working to ban toxic chemicals in our environment. There are also resources to help and ways to get involved in the fight. It’s all at EndingPD.org

The above Q&A is edited for length from their original conversation.

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