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Dr Ray Dorsey interview featuring pesticides, paraquat, Parkinson

Interview with Dr. Ray Dorsey: Ending Parkinson’s Disease

Dr. Ray Dorsey is the David M. Levy Professor of Neurology and Director of the Center for Health + Technology at the University of Rochester. Through creative use of technology, he and his colleagues seek to enable anyone anywhere to receive care, participate in research, and benefit from therapeutic advances. His research has been published in leading medical, neurology, and economic journals and has been featured on National Public Radio, in the New York Times, and in the Wall Street Journal. In 2015, the White House recognized him as a “Champion for Change” for Parkinson’s disease.

What is your connection to the Parkinson’s community?

I am a neurologist and Parkinson’s disease specialist at the University of Rochester, where I direct a Center for Health + Technology. Our vision is “Research and care for anyone anywhere.”

You recently wrote a book on Parkinson’s. What inspired you to write it?

Parkinson’s disease is the fastest-growing brain disorder in the world, even faster than Alzheimer’s disease.

Dr. Bas Bloem and I wrote a piece called “The Parkinson Pandemic” to highlight this rise and how the Parkinson’s community could mirror the activism of the HIV community and come together to end the disease. The piece resonated with the community, and we were joined by Drs. Todd Sherer and Michael Okun in writing the book, Ending Parkinson’s Disease.

As you were writing the book, was there anything that surprised you?

I knew a bit about the environmental links, such as certain pesticides linked to Parkinson’s disease. But as I read and investigated more, I came to see that many cases of Parkinson’s may indeed be preventable.

What are the challenges we face that make it difficult to end Parkinson’s?

We, the Parkinson’s community, have been too quiet for too long. The disease now affects 1 million Americans. Every day 10,000 Americans turn 65 and up to 1 in 15 of them will develop Parkinson’s disease. The motto of the HIV community is “Silence=Death”. For the Parkinson’s community, “Silence=Suffering, Needless Suffering”. We need to change that.

What do you hope people take away after reading your book?

We can form a “PACT” to end Parkinson’s disease:

  • Prevent – The first step to any pandemic is to contain it. We have done nothing but fuel it. A pesticide called paraquat is linked to the disease, banned by China and 31 other countries, but use in the U.S. has doubled in the past decade. Another chemical called trichloroethylene, or TCE, used in everything from decaffeinating coffee (in the 1970s) to removing grease contaminates over half of Superfund sites in the U.S. and thousands of other sites. In the process of writing the book, I found one such site 15 minutes from home. The chemical contaminates up to 30 percent of groundwater in the U.S. and can evaporate (like radon) into people’s homes and workplaces without anyone knowing. We need to ban these toxic chemicals that are contributing to the rise of Parkinson’s.
  • Advocate – We need to advocate better policies and resources. While the number of Americans with Parkinson’s has increased 35 perfect in the last 10 years, NIH funding, adjusted for inflation, has actually decreased.
  • Care – We need to care for all affected with the disease. Over 40 perfect of Americans with the disease do not see a neurologist soon after diagnosis. Those that do not are more likely to fracture their hip, be placed in skilled nursing facilities, and to die. We need to use telemedicine to bring care to patients in their homes and spread expert care models to all those in need.
  • Treat – The most effective medication for Parkinson’s (levodopa) is over 50 years old and does not address the underlying disease. We need a new generation of therapies that can help slow the progression of the disease.

If you could offer advice to Parkinson’s researchers and healthcare professionals, what would it be?

The status quo is not working. We need different approaches and broader engagement with the Parkinson’s community. In the book, Ending Parkinson’s Disease, we lay out the prescription for action for addressing what I believe is one of the great health challenges of our time.

Comments

  • Dstreilein
    1 week ago

    Interesting column. I read in many places discussions about finding a cure for Parkinson’s. The issue to me after 10+ years since diagnosis, that the “hope” for a cure coupled with the expectation of Parkinson’s patients and their caregivers that all diseases have a “cure”, if we just spend enough on research. I have coached boxing for Parkinson’s over the last 5 years. Those patients that join and focus on exercise, diet, swallowing, reading to retain cognition and stay engaged with others with the disease have found their cure. Most come into the program with no thought of what they are really facing. After 6 months or so of weekly vigorous exercise, they come to realize that “control” of this disease is in each patient’s decisions to act. They tend to stop looking for “cures” but are excited to realize they control the course of their disease. For myself, at 76 years old, 10+ years post diagnosis, I am a fully functional person. I asked for suggestions and took avise from my Movement Specialist, had the DBS surgery, went to the gym, worked hard at vigorous exercise and over the first 4 years achieved a level of capacity that would have not happened without taking control.
    I certainly hope the disease “cure” is found, but we are where we are and we know that the path followed by those who forget immediate solutions or quick quack fixes and turn attention to acknowledging we control how our disease progresses. And that control is difficult, time consuming and takes a lot of exertion.
    Every day spent “suffering” is a day that we will never get back. But every day we take control and exert our will, means a better day tomorrow.
    David Streilein

  • Chris H. moderator
    1 week ago

    Thanks for sharing this, @dstreilein. It’s awesome to read about all the ways you’ve continued to stay active over the years. Really great perspective on taking control of your days. Thanks again! – Chris, ParkinsonsDisease.net Team

  • Neve
    1 week ago

    I have nto found a medication which makes me feel better. The specialist and support nurses keep insisting I increase my medication, which usually ends up making me feel worse. I have tried to question the diognosis as my Mum had an essencial tremor. the question I keep asking is what effect would taking Parkinsons meds have on me if I did not have Parkinson’s but an essencial tremor. I do not get a positive answer if anything I am made to feel stupid. I have even asked to be tested to prove once and for all I have Parkinsons once again negative response.

  • andrew
    1 week ago

    I’ve had the same issue with standard levodopa medications, at ever increasing dosages or extended release type. No improvement but instead negative side effects. The potential negative effects of long term use such as dyskinesia, hallucinations and unexpected sleep episodes are not taken seriously enough.
    If one is tested for environmental causes such as herbicides or heavy metals ( especially manganese) as being the source, shouldn’t there be a different course of action developed? There appears to be nothing new or groundbreaking coming out of the
    Neurological branch of medical research.

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