An interview with Jane Rice Williams: What Defines Us
Biography
The heart of the Appalachian Mountains, Harlan, KY, will always be home, although we have not lived there since the 1980’s. After our 2 children were in middle school, out of necessity and due to the failing coal economy, my husband encouraged me to follow my father’s footsteps to a career in law. I retired in 2020 after practicing for 30 years, the last 8 of those years as a judge in the Kentucky Worker’s Compensation arena.
Can you tell me more about your Advocacy?
Seems like I’ve been advocating for something all my life. Since the Parkinson diagnosis on October 26, 2016, after a few months of processing the diagnosis, I’ve advocated mostly to anyone who would listen to the point that before leaving the car to join friends for dinner, my husband would suggest, “Can we hold off on talking about Parkinson’s Disease just this once?” I had to improvise and get all the Parkinson’s talk in while he was in the restroom. At that time, my focus was on how exercise can reduce symptoms.
The most thrilling times of advocacy have been the journey to see the Parkinson’s Disease Registry passed in Kentucky during the 2025 legislative session. The next step is implementation, which is actively in the works, since the registry was funded in the 2026 legislative session.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure? Self-help excites me – diet, exercise, social life, relaxation, – and the healthy balance we need. I’ve studied most of my life – PD just changes the focus a little. Then, Dr. Dorsey’s message “Parkinson’s in Preventable” kicked things up a notch and opened a whole new world of what to advocate. Our local Parkinson group organized a three-week study of Dorsey’s first book with Dr. Dorsey zooming in on the last meeting for Q & A. My Abstract based on the study made the cut for the poster contest in Barcelona at the 2023 World Parkinson Congress. Why did this book and study generate so much excitement? Dr. Dorsey says, you cannot find a cure until you find a cause. You have to know where it comes from to get rid of it. We have a vast amount of science backing the environment as the major cause. That puts us much closer to a cure.
What type of goals do individuals with Parkinson have when working with you?
Varied. Some want to get better, some purely social, some want to learn all they can about all aspects. Some just show up to be a part of a program.
What type of training and how long are the programs?
Also varied. We have physicians or other specialists to educate. We plan to start Rock Steady Boxing, which will be an ongoing, life changing addition to our programming – for those who will participate.
What effect can your Advocacy have on an individual with Parkinson’s?
Advocacy instills hope. When a newly diagnosed has someone with PD to exchange experiences, hope and comfort grow.
What would you like to see as a future goal for your Advocacy?
Much more funding for research, and research that leads to effective treatment. Funding for Parkinson Research needs to be on par with other conditions as widespread and devastating as Parkinson Disease has become.
What events do you participate in?
MJFF Policy forum. PDIQ and You; Annual 5-K in our community, ambassador for PMD Alliance, Local presentations.
How does this also assist the caregivers? Caregivers are just as in need of knowing all they can about PD.
How can someone get in touch? What is your website?
(859) 338-7430; PIM.Eastky@gmail.com
How can others also become advocates for awareness? You have to truly care about the mission and study so that you become as educated as possible and are equipped with the knowledge to address whatever issue or questions arise. You should know where to point people for help that is beyond the scope of your knowledge or expertise, such as medical advice unless you are a physician trained in Parkinson Disease.
If you could add any questions to this interview that you may want others to learn about, what would the question(s) be?
No suggestions – looks like you hit everything.
In your opinion what is the key to effective advocacy?
Effective advocacy requires the advocate find something that matters to the audience. The overwhelming majority believe the “personal story” makes a difference. I agree in part, but that personal story must connect with the audience in a personal way. So, in advocating, it is essential to study before you speak. For example, one group – my family or friends, people who care about and love me – may be moved by knowing that due to Parkinson Disease, I have not walked since Thanksgiving and had major back surgery in December. I’m not expected to walk for quite a while. This is all they need to know to be passionate about ending Parkinson Disease. On the other hand, our state and national legislators, may not be moved by my personal trials but perk up when they hear our government spends only $270 million each year to study Parkinson Disease – an amount devalued each year by inflation – but spends $82 billion on the back end to care for those afflicted by this disabling condition.
How can we better fundraise to support a cure for Parkinson’s?
Sadly, the public sees a young onset as a sadder situation than an elderly patient who generally has much less life to live with Parkinson. Recently, young onset patients flood social media – Allie Signorelli for one. She is beautiful, educated, funny, well spoken and creative. When I say beautiful, she is click bait. Those who check her out are not disappointed.
What other activities do you undertake to help improve and support your daily living eg. exercise and alternative remedies?
I am a patient of Dr. Laurie Mischley. Thus I follow a clean, vegan, gluten free, non dairy diet – to name a few. I also exercise 7 days a week, currently working with Kristine Meldrum’s cocktail method.
Why should people who don’t have PD care about this?
How do they know they don’t have PD? PD is normally undiagnosed until years after it begins or after exposure – possibly 20 or 30 years. Since 90,000 Americans are diagnosed each year, and so many of the causative chemicals remain in use in the United State’s, chances of contracting PD grow.
Have you had any family members or relatives affected by Parkinson’s disease?
Not that I know.
If you had one song that would tell us more about you or represent your life, which song would it be? Today is Easter – the most important day in the life of a Christian –The lyrics of “In Christ Alone” Keith Getty and Stuart Townend, transcend any negative message PD can conjure in a person’s mind.
What are your social media tags?
Jane Rice Williams. A/K/A No social media tags, but I wouldn’t mind at least one other.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
“The Tapestry Poem”
Author Unknown, approximately 1910
My life is but a weaving
Between my God and me.
I cannot choose the colors
He weaveth steadily.
Oft’ times He weaveth sorrow;
And I in foolish pride
Forget He sees the upper
And I the underside.
Not ’til the loom is silent
And the shuttles cease to fly
Will God unroll the canvas
And reveal the reason why.
The dark threads are as needful
In the weaver’s skillful hand
As the threads of gold and silver
In the pattern He has planned
He knows, He loves, He cares;
Nothing this truth can dim.
He gives the very best to those
Who leave the choice to Him.
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TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George
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