Ending Parkinson’s Disease book launch – Webinar notes

Ending Parkinson’s Disease book launch – Webinar notes

In mid-March, EndingPD.org offered the first webinar in a series on the recent launch of the book Ending Parkinson’s Disease: A Prescription for Action. The webinar featured Ray Dorsey, MD, a neurologist at the University of Rochester and book co-author. He briefly touched on general recommendations for the COVID-19 pandemic before discussing the reasons for the continuing rise in cases of Parkinson’s disease (PD) and what we can do to prevent – and, someday, end – PD.  We at Stanford Parkinson’s Community Outreach listened to the webinar and are sharing our notes.  

The webinar was recorded and can be viewed on YouTube.

To register for free to view future webcasts in the series, including the next presentation on April 8, visit endingpd.org.

If you have questions about the webinar or the book Ending PD, you can contact the Ending PD organization at Info@endingpd.org.

Now… on to our notes from the webinar.

– Lauren

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Ending Parkinson’s Disease – Webinar notes

Presented by EndingPD.org

March 16, 2020

Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

Dr. Ray Dorsey is a Professor of Neurology and Director of the Center for Health and Technology at the University of Rochester in New York. He co-wrote the new book Ending Parkinson’s Disease: A Prescription for Action along with Dr. Todd Sherer, Dr. Michael Okun, and Dr. Bas Bloem. In this webinar, Dr. Dorsey talked about COVID-19 and PD, the age of degenerative and human-made diseases, the increase in PD, and how we can go about ending PD.

Dr. Dorsey started the talk by acknowledging that we are in the midst of two great health challenges: one that is receiving attention (COVID-19), and one that is not (PD). Together, he believes we can overcome both.

COVID-19 and PD

Who is at higher risk? Older individuals, particularly those over 60 and those with serious conditions that affect immune function, such as heart or lung disease, diabetes, or cancer. We do not have evidence that individuals with PD have a higher risk of becoming sick or of suffering more severe illness if they do fall ill with the virus.

Dr. Dorsey’s prescription for COVID-19:

  1. Don’t take this lightly!
  2. Ensure you have an adequate supply of your medications.
  3. Remain physically separated but socially connected
  4. Stay at arm’s length from other people
  5. Avoid crowds – let someone else do the shopping
  6. Get fresh air and enjoy a walk (not in a crowded area)
  7. Don’t smoke or vape
  8. Seek medical attention if you develop a fever, new cough, or shortness of breath
  9. Have access to a web camera and see your doctor remotely, if possible

PD is the world’s fastest-growing brain disease

“Every civilization has its own kind of pestilence and can control it only by reforming itself.”

– René Dubos, Mirage of Health: Utopias, Progress, and Biological Change (1959)

PD is increasing faster than any other neurological disorder in the world. In the last 25 years, people with a PD diagnosis has doubled from 3 million to more than 6 million, and is expected to double again by the year 2040. So far, we have not managed to slow the spread. Toxic chemicals such as pesticides that are known to contribute to PD are still common in our society; little has been invested in developing new therapies; and there are still many who have not received diagnosis or treatment for the condition.

Early humans died mainly of causes like pestilence and famine. The agricultural revolution a thousand years ago mostly eliminated deaths from starvation, but made our tightly populated settlements more vulnerable to pandemics such as bubonic plague. Now, people are living longer and our deaths are most commonly caused by degenerative and human-made causes. For instance, most lung cancer is man-made, due to cigarettes and air pollution.

While it is growing worldwide, PD is most prevalent in the industrialized parts of the world. It was first described 200 years ago by James Parkinson, the “shaking palsy” that would be known as PD, at the height of the industrial revolution in London. The city was subject to severe air pollution at the time, spawning the term “London fog”; this may have been similar to present-day Beijing, where the rates of PD are increasing faster than anywhere else in the world. In 1985, Dr. Bill Langston with the Parkinson’s Institute in Sunnvyale, CA identified the first environmental exposure to be linked with PD.

Today, our long lives allow the motor symptoms of PD to become visible. The earliest symptoms tend to be loss of smell (anosmia) and constipation, which may precede the classic motor symptoms such as tremor by years or even decades. In past generations, not everyone would live long enough to develop the more visible symptoms of PD.

PD has been linked to numerous environmental factors: air pollution, heavy metals, certain pesticides, and industrial chemicals. For example, paraquat is the most toxic herbicide ever created. Over twenty studies have linked pesticide exposure to PD, and paraquat has specifically been linked to PD. Around the world, 32 countries have banned paraquat, including China. Yet this highly toxic chemical is still legally available in the United States, and its use has doubled over the past decade.

Another concerning substance is trichlorethylene (TCE), an industrial chemical that has also been associated with PD. It was ubiquitous in the 1970s in many consumer products and occupational settings such as dry cleaners. Many areas in the U.S. remain contaminated with TCE, including many Superfund sites, and it is the most common groundwater contaminant, up to 30 percent of the national groundwater supply. Locally, Silicon Valley has sites of TCE contamination, including under the Google campus. Some individuals take measures to test for TCE in the air and install costly remediation systems in their homes.

The book Ending PD highlights these environmental concerns and follows specific cases of individuals with known exposures who later developed PD and decided to share their stories.

How can we end PD?

According to the authors, we can end PD by following the P-A-C-T framework:

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Question & Answer Session

Q: How can our lifestyle influence our likelihood of developing PD?

A: Dr. Dorsey recommends 3.5 to 4 hours of vigorous exercise per week, eating a Mediterranean diet low in meat products, and drinking modest amounts of caffeine (1-2 cups of caffeinated beverage) per day. These lifestyle factors have all been correlated with decreased risk of developing PD.

Q: What is it about welding that causes PD?

A: It is likely the manganese. We are unsure of the exact risk but it is likely a significant contributing factor.

Q: To what extent do you believe a solution to PD will originate from a pharmaceutical source, as opposed to a more psychological or spiritual realm?

A: The best cure is prevention – we need to clean up the environmental factors that cause the disease in the first place

Q: How does one test the water or air for tricholorethylene (TCE)?

A: The book Ending PD addresses this specifically. You can also call the EPA or visit their website on private wells.

To test the air, visit the EPA’s site on indoor air quality.

Q: How can ordinary people help out with the stigma that PD patients sometimes experience?

A: AIDS activists provided a good model. Those communities most affected rose up and reached out to others, through events like quilt over the national mall, and tried to bring attention to the disease. People like Michael J Fox and Alan Alda should be applauded for sharing their stories. The more individuals can share their experiences, the less stigmatized this disease will become.

Q: Does knowing what caused a PD patient’s illness change what care they receive?

A: Currently, it does not. Eventually, it likely will. We are starting to sub-type genetic causes of PD for those who have a genetic component. For those with environmental exposures, we do not yet know if this should affect the treatment down the line.

Q: Should there be more research into young-onset PD (YOPD)?

A: Absolutely. In the past, only 4% of those with PD had YOPD, but that percentage is now thought to be much higher. There are often more genetic factors for those with YOPD. Maybe environmental factors are also playing a role; those with mutations in the gene LRRK-2, for instance, are more likely to be susceptible to pesticides.

Q: How can I find the location of all trichlorethylene (TCE) contaminated sites in the US?  

A: There is a map in the book. Many Superfund sites contain TCE contamination; Superfund sites can be searched by state.

Editor’s note — The Environmental Working Group has a map showing TCE contamination in public water systems.

Q: How do we advocate for continued cleanup of Superfund and other contaminated sites?

A: We need more public protests and activism! The March on Washington in 1963 and the March of Dimes which started in the 1930s are examples of activism that Dr. Dorsey cited.

Q: Are there differences in women versus men developing PD?

A: Men have 50% increased risk of developing PD compared to women. This may be due to environmental exposures rather than biology – historically, agriculture and working with heavy metals have been male-dominated areas.

Q: Do you feel there is potential in anti-inflammatory therapies in preventing or treating PD?

A: There have been some studies using existing anti-inflammatory meds to treat PD, which were not very promising. But there have been some very interesting studies in mouse models for inflammation as well as a gut-brain connection. More research is needed to clarify these relationships.

Editor’s note — To learn more about inflammation in PD, see the Stanford APDA’s notes from a past webinar on this topic.

To learn more about the gut-brain connection in PD, see the Stanford APDA’s notes from a past webinar on this topic,

Q: Do you think I am at higher risk of complications from COVID-19 due to my existing swallowing issues in PD?

A: Yes, those with impaired swallowing would be at greater risk if they get COVID-19. You could consider using straws and sit upright when eating or drinking, to try to reduce aspiration risk. Monitor the sick individual carefully.

Editor’s note — To learn more about swallowing difficulties (dysphagia), see the Stanford APDA’s notes from a past webinar on this topic.

The Stanford APDA also has a webpage on swallowing issues.

Q: My mom is in Lithuania and has had PD for 10 years. Do you know what her options are for pursuing care with a physician for her PD?

A: People are usually only allowed to see a doctor who is licensed in their country. Is there a PD specialist in Lithuania? He does not recommend bringing people a long distance to see a physician in another country, because the travel may represent risks in itself, and it may be difficult to continue care over such a long distance.

Q: What are some of the challenges to remote treatment of PD?

A: The most common way for neurologists and movement disorders specialists to assess PD symptoms is a physical examination called the Unified Parkinson’s Disease Rating Scale (UPDRS). It is useful for observing changes in motor symptoms over time but it is somewhat subjective – the score may vary depending on which physician is administering the exam.

We need objective, sensitive ways to measure PD symptoms that reflect how people are doing – not just the fraction of time we see you in clinic, but the rest of the time too. The more we can develop biomarkers and wearable sensors to provide us with better information, the more informed your care will be.