A Life Changing Diagnosis: The Williams Family’s Fight Against Parkinson’s Disease

To look at her, you would not know that Jane Rice Williams has been living with Parkinson’s disease for nearly the last decade. Jane does not have a tremor, one of the tell-tale signs of Parkinson’s. Instead, she has trouble moving around, particularly in the morning before her medication has had time to set in.

Jane’s freezing gait has not slowed her down one bit. She has dedicated the last five years of her life to educating those in London and Eastern Kentucky about Parkinson’s disease, a disorder that affects the nervous system and other parts of the body controlled by the nerves caused by a lack of dopamine. Jane is the founder and executive director of the London-based nonprofit organization Parkinson’s in Motion.

Jane and her husband, Mackey Williams, have been residing in London since 2003. Though the pair aren’t originally from London, they have made quite an impact on their community in just the last two decades.                       

Jane and Mackey met when they were just 15 years old while living in Harlan. The pair married in 1976 and traveled the world while Mackey served in the United States Marine Corps. Jane and Mackey have two children and five grandchildren, a big motivator for keeping strong. Their son, Tyler, passed away in 2020 at the age of 41. His children, Asher, age 23, and Summer, age 19, are both immersed in secondary education. Their daughter, Annie, and son-in-law, Chad Voelkert, live in Lexington with their three sons Max, age 17; Silas, 15; and Walter, 12.

In the late 1980s, Jane, Mackey and their two children moved to Lexington to allow Jane to attend law school, though she admitted she never imagined becoming an attorney.

"My dad was an attorney,” she said. “But I never, ever thought of being a lawyer, ever. I grew up in Harlan, in a very rural community and thought mostly about getting married and having children. I never really thought about having a career.”

Jane received her Bachelor of Arts from the University of Kentucky and her Juris Doctorate from Salmon P. Chase College of Law in 1995. Then, in August of 2003, Jane and Mackey decided it was time to move closer to their family in Harlan and found themselves living in the heart of London.

For many years, Jane practiced law out of her home until being appointed Administrative Law Judge with the Kentucky Department of Workers’ Claims in 2012.

Around that same time, Mackey began building London’s parks system. Mackey served as London’s Parks and Recreation Director from 2015 until his retirement in 2023. In his eight years with the parks department, Mackey helped to expand and create several park facilities in London, including additions to the Wellness Park and the creation of Town Center Park.

“I don’t know anyone who has impacted this community as much as Mackey has,” Jane said, noting that Mackey’s greatest contribution to his community was likely the Veterans Park which he oversaw from start to finish.

It was in late 2014 that Jane began noticing a stiffening of her left shoulder, which she said she had self-diagnosed as adhesive capsulitis.

“We would walk at Levi Jackson Park and I realized my arm wasn’t swinging when I walked,” she said. “That was weird but I didn’t read about it, I had already diagnosed myself, so I wasn’t doing an open review of what might be going on. By the time I got to the doctor that actually diagnosed me with Parkinson’s, I could tell my left leg wasn’t doing its job. It was just like I was working with one side of my body.”

Two years and several specialists later, Jane was officially diagnosed with Parkinson’s disease in October of 2016.

“I couldn’t believe it, that was the last thing I expected to hear,” Jane said of the diagnosis. “Parkinson’s had never crossed my mind. I came home and I called my husband, so Mackey came home from work and we literally cried all day. We were so scared—I didn’t know what it meant.”

Mackey said he was in total shock and disbelief about Jane’s Parkinson’s diagnosis.

“I had no idea what Parkinson’s was,” he said. “My first question to Jane was, ‘Is this fatal?’. The next day, as she drove home from hearings in Hazard, she called to say she was going to attack this thing head on. I knew I was going to do whatever it took—all in, 100 percent.”

Jane went on to work the following day despite some reservations about it. She was sitting in a dark room by herself between court hearings, reflecting on her diagnosis.

“I really felt a strong presence of God,” she said. “It really felt as if he was putting his arms around me and was saying ‘this is going to be okay, this is necessary. We’re going to use this.’ I have never asked to not have Parkinson’s because I felt so strongly that God had a plan.”

Jane began taking action to combat her disease’s symptoms with workout plans designed specifically for those with Parkinson’s and began taking medication to help with her freezing gait.

Though she kept it a secret from even some of her closest friends for almost six months, Jane finally began telling people of her Parkinson’s diagnosis and it was during that time that she realized how little people know of the disease.

“I just thought I can’t keep this to myself, I’ve got to share my connection-ability,” Jane said.

Two years after her diagnosis, Jane formed Parkinson’s in Motion, a nonprofit organization dedicated to educating others about Parkinson’s disease while also providing support and resources for people in the area.

The very first meeting of Parkinson’s in Motion was held at First Presbyterian Church, with a lineup of speakers to inform community members of the disease, though Jane admitted she never imagined that first meeting to have so much success, with 45 people in attendance. The organization has only continued to grow, hosting monthly informational meetings, exercise classes and an annual 5K in downtown London.

“London, Kentucky knows more about Parkinson’s than any community of its size, I am convinced,” Jane said, noting that several people have been given that same diagnosis since the organization’s formation, as a disease that often goes undiagnosed.