Editor’s Note: Joanie Prentice is a Parkinson's policy advocate and former full-time care partner to her late husband, Sonny. She lives in Louisville, Kentucky, where she facilitates a support group for care partners. In this guest blog, Joanie shares why she advocates for government policies that benefit the Parkinson’s community in Kentucky and across the country. 

My husband, Sonny, was 42 when his Parkinson’s symptoms first showed up. He was a musician and played string instruments — it’s what he did for a living. He knew something was off when he couldn’t push the strings down with the accuracy and speed he was used to.

He told me and his doctor that something felt wrong with his brain. But he was told he was too young for Parkinson’s. It took another six years to get an official diagnosis.

Parkinson’s disease whittled away at Sonny’s life for another 21 years. Over that time, Sonny lost his ability to do many of his favorite things. He lost his livelihood — his ability to play music and sing with his beautiful voice that became a whisper (a trademark of Parkinson’s). He had to give up his small plane pilot’s license, and along with it, his role as a volunteer for our local hospice where he flew pediatric patients over their houses for a fun diversion.

Sonny also lost his ability to go for long distance hikes. In 2017, we hiked to the top of Natural Bridge in the Red River Gorge together for the last time. Sonny wanted his three granddaughters to see the view that captivated us for over 40 years. It took every ounce of energy he had.

When Advocacy Leads to Change

Our experience with Parkinson’s — Sonny’s as a patient and mine as a family member and care partner — is the reason I joined The Michael J. Fox Foundation’s Parkinson’s Policy Network as an advocate. State and federal government leaders have the power to help make life better for people with Parkinson's and end this disease for good. I raised my hand because I knew that sharing our story could help other families like mine.

In 2023 and 2024, I was part of a team that met with Representative Morgan McGarvey and Senator Mitch McConnell to enlist their support for the National Plan to End Parkinson’s Act. We were thrilled when President Biden signed the bill into law!

Just this month, I worked with The Fox Foundation and local legislators in my home state of Kentucky on a new law that will make ours the 15th in the U.S. to create a Parkinson’s registry. Registries are databases that collect de-identified health demographic information on people living with Parkinson’s.

As part of the legislative process, the registry bill had hearings before the Kentucky General Assembly. I quickly alerted my network of advocates to reach out to our lawmakers and ask them to support the bill. Our calls and hearing testimony helped the legislature understand that Parkinson’s disease looks different for every person. No two people have the same causes, symptoms, progression or response to treatment. Because of this variation, we need registries to identify patterns that can support research breakthroughs and better care.

The registry bill passed unanimously and was delivered to Governor Andy Beshear’s desk. My fellow advocates and I called his office to encourage him to sign the bill into law, which he did on March 25, 2025!

Supporting Each Other Through Community

In Louisville, we have a large and close-knit Parkinson’s community. We come together for dance and exercise programs like TKO Parkinson’s Rock Steady Boxing. I facilitate a monthly online support group for care partners and participate in a Parkinson’s Advisory Board at a large health care provider network. We’ve all become friends as we share our joys and our sorrows. I truly believe it is part of my higher purpose in this life.

While I’m proud of the way we’ve banded together in Louisville — as I’m sure many other communities do as well — I believe our government can and should do more to help the Parkinson’s community.

We need earlier diagnosis, improved access to care, more movement disorder specialists, lower cost medicines, and respite for care partners, many of whom, like me, drop out of the workforce to care for our loved ones. We need support for research to prevent and cure this disease.

Sonny died in 2020 after a terrible fall. Fortunately, he was already under hospice care, and we made the decision to stay home rather than go to the hospital during the early days of the pandemic. He died in my arms while I sang to him the same song he sang to me at our wedding: John Denver’s “Annie’s Song.” You’ve probably heard the lines… “let me lay down beside you… let me die in your arms.” We got our wish.

Please join me in recognizing Parkinson’s Awareness Month (April) by encouraging our government to do more for our loved ones with Parkinson’s. Sign up to become an advocate today.