Light A Fire, Motivate Activism… With A Book Study?

By: Jane Rice Williams

Ending Parkinson’s Disease: A Prescription for Action

Book written by co-authors Ray Dorsey, MD, Todd Sherer, PhD, Michael S. Okun, MD, Bastiaan R. Bloem, MD. PhD.

Who: Parkinson’s In Motion (PIM), an East Kentucky/Appalachian Resource Group
What: A 3 part book study.
Where: Laurel County Public Library, London, Kentucky
When: Three Tuesday evenings in September of 2022
Why: To educate the Parkinson’s community and the general public on the truth about causation of PD.
How: By utilizing the “village” of friends and family who burn with passion to help our PD community.
Result: Overwhelming!

You think “exciting book study” sounds oxymoronic, especially one about science and medicine, right?

This is not just any book.

The release of Ending PD coincided with the outbreak of the Coronavirus in 2020, delaying the book’s exposure to the intended audience, or any audience, by more than a year. I knew nothing of the book before viewing “The Long Road to Hope” on the PMD Alliance website in Spring of 2022, a documentary that dramatically boosted the book’s audience. I listened to the book 3 times and read it once, then read it again while listening to the Audible version.

My review of the book appears on Amazon:

Parkinson’s in Motion, an East KY/Appalachian resource group held its first book study in September of 2022. This book is a must read for everyone whether or not you have PD (have or haven’t yet been diagnosed). Packed with life changing information, Ending Parkinson’s Disease ignited energy, excitement and purpose for our entire Parkinson’s Disease resource group. Potentially complicated information comes from the authors, including Ray Dorsey, MD, in a passionate and easily understood format. Through our 3-week book study, we reached and educated more new people than we had since the beginning of our group 4 years earlier. This book focuses on the cause of PD and what we can do to bring it to an end. Many if not most affected by PD do not understand or know why they have PD. Many erroneously believe it is a result of flawed genetics when in fact the genetic connection is negligible. Until we know the cause of this debilitating disease, we cannot end it. Now that the evidence strongly supports chemicals in our environment as the root cause, we must act and it must be on a large scale. We used this study to educate not only on causation but also on what action we must all take to make an impact. Parkinson’s Disease is the fastest growing neurological condition in the world. The critical facts that cause the reader to take action for change are clearly spelled out in this book. In fact, everyone who hears about the book, hears Dr. Dorsey or reads what Dr. Dorsey has to say is moved to action. The plan of action laid out in the book is PACT Prevent, Advocate, Care, Treat, a plan carefully explained in the book. WE CAN DO THIS!!

This book is one of a kind, the first publication I’ve read that sheds a positive light on how we can be a part of the cure for PD by knowing why we are here – why PD is the fastest growing brain condition on the planet. It points to other successful campaigns that have ended or greatly reduced death or tragedies:

March of Dimes – Polio – This disease caught the interest of the public when it was thought President Teddy Roosevelt was not walking due to the disease. It is now almost non existent;

MADD – The catalyst for Mothers Against Drunk Drivers? Tragic and senseless deaths of children. Legislation and awareness have drastically lowered the number of deaths due to drunk driving;

Act Up – Those with HIV/AIDS, mostly younger men, were dying at an alarming rate and accused of causing their own demise. It is now treatable such that it is undetectable; and,

Susan B. Komen – Women of all ages, many young women and many quickly, die as a result of breast cancer. This foundation has raised awareness and advanced the science of a cure for breast cancer;

A US President, children, young men, young women. How does Parkinson’s Disease compare? Sad but true, society’s interest in the plight of the elderly pales in comparison to that of the younger population. But there are many misconceptions about who is at risk for PD. Ending PD sheds light on those misconceptions and has sparked optimism with an electrifying call for action.

Parkinson’s Disease normally becomes symptomatic around the age of 60, although early onset may occur in one’s twenties and Parkinson’s Disease is said to often lay dormant for as long as 20 or 30 years. If so, then many, many adults of all ages have Parkinson’s’ Disease although the symptoms have not yet surfaced. Science has been aware for more than 100 years that PD is caused by dangerous exposures in our environment and not as the result of flawed genetics, something of which the general public had little to no awareness…until now.

Logistics of the study – how we successfully pulled it off!

The Venue:
The lovey and extremely accommodating Laurel County Public Library in London, Kentucky – the community that is the home base for Parkinson’s in Motion – got the ball rolling by ordering multiple copies of the book and positioning them where they were the first visual when walking in the front door of the library.

Advertisements flourished on social media, through speaking engagements at local civic groups and on radio interviews. Sign up was handled by the library for each of the three nights of the event.

We wanted a “big name” to add to our fliers to encourage participation but my efforts kept hitting a brick wall. I decided to quit fooling around and one evening in August I was able to locate a mistyped version of Dr. Dorsey’s email address. After a few revisions, I lucked out and my pleading made its way to Dr. Dorsey’s inbox. When I opened my email the very next morning, his response was, “How may I help?” In no time, we had our perfect world – we scheduled Dr. Dorsey to attend by Zoom on the final night. Additionally, two representatives of the Michael J. Fox Foundation participated each session via Zoom and in person. Discussion with these special guests encouraged lively participation with the main question, “How do you think you contracted PD,” or “Why do you think have PD?” The library staff handled all technology including monitors, audio, zoom and editing for posting. The first two sessions focused on the first and then second parts of the book – both parts richly historical. The final session – when Dr. Dorsey attended via Zoom – focused on how we can take action . We concluded the last meeting with a sponsored pizza dinner and fellowship. The financial burden on PIM – $0.00.

Did we accomplish our goals? Yes! And then some.

We must do all we can to reach the undiagnosed and undertreated in our remote area where no movement disorder specialists and few neurologists exist; we strive to provide hope to a depressed population.

The study achieved our purpose to embrace the optimism conveyed in the book and pass the optimism to others by:

  • Spreading the truth about PD’s prevalence and main cause;
  • Encouraging activism by focusing on the book’s action plan: PACT – Prevent, Act, Care and Treat.

Approximately 50 people participated with many attending all 3 sessions.

PIM has new members as direct result of study. This includes a 39-year old, diagnosed just hours before the last meeting. He is able to keep informed and guided through those difficult early years of adjusting to the disease.

The most anticipated outcome was education about PD for those who attended and read the book. We did not expect much more. We had no idea how the study would inspire and invigorate a large part of our community, including physicians and other providers, far beyond our expectations. Optimism is contagious. Diagnoses have increased as a result of this heightened awareness about PD. Donations to PIM have increased.

Phase II – This study is the catalyst for dramatic increase in PIM’s outreach and strategic plan which includes:

  • Developing a structured plan to implement PACT;
  • Join with Michael J Fox Foundation to introduce legislation at the state level;
  • 5K Run Walk for all to be held on April 29, 2023
  • Develop a workout facility with PD specific classes and equipment; and,
  • Utilize College interns – 4 college students now work with PIM!

Finally, a reason for optimism – We can and will change the world! – starting at home.