Inside a studio gym a few doors down from a local coffee shop in Tallahassee, Fla., sunlight streams through the floor-to-ceiling windows. It’s the afternoon Rock Steady Boxing class, and nine students are warming up for 90 minutes of fast-paced exercises. They shuffle in patterns around the floor, bobbing and weaving along with their instructor to pulsing, upbeat music.
As warm-ups wind down, the music changes from Motown to the familiar rhythmic opening of “Eye of the Tiger.”
Students pair up at stations, energized and ready for the next round.
Their instructor Kim shouts: “This is for Judith!” The students respond with cheers for their fellow classmate, patient, impassioned advocate, and accidental leader — Judith Barrett.
Several years ago, Judith began experiencing what she believed were early symptoms of Parkinson’s disease. At an April 2015 appointment, her neurologist confirmed her suspicions.
“There were two pieces that struck me at the time of my diagnosis,” she recalled. “First, I wanted to make sure that the care that I participated in as I moved forward was the best it could be. Second, because I was so early in my diagnosis, I thought that I would also probably be a good research candidate. I said, ‘Let’s put this diagnosis to good use.’”
With those considerations in mind, Judith and her husband, Terry, began searching for where funding and research was happening in this disease in the state of Florida.
“And we found the movement disorder program at UF at this point,” she said. “It was where the most work was being done on the topic, and still convenient for us from Tallahassee.”
By August of that year, Judith had her first appointment with the Center for Movement Disorders.
For decades, Judith spent her career working as a nonprofit administrator, specifically with organizations that championed independent mobility. Her life’s work was spent advocating for those with special needs or who fell into what she referred to as a “black hole” of care – just on the fray of receiving the treatments and therapies they might need.
With this in mind, Judith and Terry entered a new world where this disease looks completely different from person to person.
“With my first visit in August, what touched my husband and I, was the amount of time each of the professionals within the entire program allotted to spend with me, with the patient,” she said. “We were given the opportunity to learn as much information as we could, just from one visit.”
Shortly after Judith’s visit, she received information on how she and Terry could give back to UF Health in other ways beyond participating in research. She followed up, wanting to learn more. Soon, she and Terry learned there were other ways that they could plan to participate in giving back.
Together, they established the Barrett CAN Fund to support patient needs at the Center for Movement Disorders. Judith credits her extensive background in nonprofit mobility advocacy for realizing that there are always people who would like to get this kind of care [that UF provides], but oftentimes cannot because of some very simple things.
That was the reason the fund really hit home for her. It allows social workers within the center to help people who are almost there, but something is keeping them from receiving the services they need in the same way she is.
“It might be a repaired wheel chair, an overnight stay… it might be one small thing, but it makes a huge difference,” she said. “My hopes are that this fund really does close the gap for more people, or it gives them the opportunity access what is at the clinic.”
To date, the fund has already helped to repair patient wheelchairs at no cost to the patient, with other projects to improve access in the works.
Judith’s generosity extends to her home in Tallahassee. Realizing that there was likely a larger population of Parkinson’s patients than she knew, she sought out support groups in her area. There weren’t many, if any, that she found.
At the same time, she happened to see a segment on “The Today Show” that profiled a new fitness program tailored for Parkinson’s patients: Rock Steady Gym. The classes are designed to delay the debilitating symptoms from Parkinson’s through movement and exercise and offer routines for varying stages of Parkinson’s.
Judith mentioned this to her friend and gym owner, Kim, who quickly became certified so that she could offer these classes. Now, Kim leads two or three classes daily for patients who are experiencing different stages of Parkinson’s. Through these classes, they have built a lively support system that continues to thrive thanks to Judith’s passion and advocacy.
“Part of what makes me who I am at this stage in my life is that I want to continue to participate in a world where people who are special needs or are forgotten receive what they need. I realize the things we put in place, whether it’s government aid or employee assistance, doesn’t always close the gap for people,” she said. “It’s what ties me together.”