In October of 2021, two casually acquainted pickleball-playing St. Simons Island retirees, Tilman Blakley and Mike McKinney, discovered that they had something else in common: Parkinson’s Disease. Tilman had been diagnosed with Parkinson’s around 2010 before retiring on the island. Mike was diagnosed just a few years earlier. They had been discussing Tilman’s need to quit pickleball because of the progression of the disease, but ended up questioning whether the area had any type of support group or other resources for those with Parkinson’s.
Upon investigation, the men found that the Glynn Country region lacked any specific coordinated type of support to help People with Parkinson’s (PwP) or their caregivers. The Southeast Georgia Health System neurology department demonstrated a limited capability to deal with the disease and most locals with Parkinson’s were going to Jacksonville and Savannah for treatment. This led Blakley and McKinney to form an exploratory committee of volunteers to determine whether the area had enough interest for a Parkinson’s support group.
When the first meeting was advertised in December 2021, hopes were that at best 20 people would attend. Much to the surprise of all involved, an estimated 100 people, including those in walkers and wheelchairs, attended. The second meeting in February of 2022 had more than 80 people in attendance despite being during the midst of COVID variant outbreaks. It became very clear at this point, that our area had a much larger Parkinson’s community than anyone knew or suspected, and it was obviously underserved. The Southeast Georgia Health System recently estimated that at the height of our “snowbird” season, there may be closer to 250-300 PwP. When taking into account their families, spouse and professional caregivers, medical personnel, and assisted living facilities, it could easily be 1000 or more people dealing with the disease in Glynn County and surrounding areas.
The support group found that most PwP were going to Savannah, Jacksonville, and the University of Florida Medical Center in Gainesville to seek treatment by Parkinson’s trained neurology specialists. Unfortunately, upon their return home, there was no specific follow-up with resources available here because no demands were being made on the system. This created an atmosphere of isolation.
As such, the support group committee quickly made it its mission to provide the Parkinson’s community with education on topics dealing with the disease, including Zoom lectures from national experts and by offering members communication by email and a private Facebook page with information like messaging and webinars from the multiple national Parkinson’s foundations. They also aim to facilitate Parkinson’s education for the Southeast Georgia Health System and Glynn County community. Excitingly, the new Health System CEO Scott Raines has agreed with the Parkinson’s Foundation to initiate a newly developed hospital system educational program as one of the Foundation’s first launch customers nationally. The committee is also identifying resources needed by PwP and caregivers such as PD trained physical therapists or speech pathologists. Last, but not least, the group also seeks to provide a sense of community for PwP and their caregivers.
FACTS ABOUT PARKINSON’S DISEASE
Parkinson’s Disease is currently the second fastest growing neurological disease in the U.S. with well over a million people diagnosed. It is estimated that one person is diagnosed with Parkinson’s every six minutes. It is projected to be the most prevalent neurological disease by 2040. It is not known exactly what causes Parkinson’s Disease, but scientists believe it is a combination of genetic and environmental factors. Family genetics have been determined to cause about 10-15% cases while 85-90% have causes that are environment or as yet unknown.
As a progressive disease that has no cure, Parkinson’s usually manifests itself in men and women in their 60s and 70s. Figures show over 21% of the total population in Glynn County is over age 65, so this is a serious concern for our local community. There are also cases of early onset Parkinson’s, where the debilitating disease can affect people 20-50 years-old, creating problems that include medical treatment and insurance, social interaction, economic turmoil related to employment, and young family caregiving stress. A problematic aspect of recognizing the disease is that symptoms vary for each individual. There are, however, four cardinal features considered when making a diagnosis:
1) Tremor, mainly at rest (described as “pill-rolling tremor” in hands)
2) Slowness of movements (bradykinesia)
3) Limb rigidity (stiffness)
4) Gait (walking) and balance problems
In addition to movement-related (motor) symptoms, there may also be cognitive impairment including memory issues, anxiety, depression, sleep disorders and other non-motor functions.
Fortunately, researchers have found that symptoms of Parkinson's can be treated not only with medication, but through certain types of physical exercise and movement. No matter how advanced the stage of the disease, consistent exercise has shown the strong possibility of significantly slowing its progression and may even reverse debilitating symptoms. Parkinson’s is the only known neurological disease that specific exercise can help in this way.
Knowing the positive impact of physical exercise, the support group teamed up with JAX Hope, Inc., a Florida non-profit under the leadership of Jennifer Otero, and The Club fitness center on St. Simons Island, managed and owned by Angela Dineen. They have initiated and established Glynn County’s first PD adaptive fitness program, led by program director and senior instructor Scott Fedisin.
Scott has over 25 years of physical fitness training expertise and has recently been certified by Atlanta based Center for Challenge Movement to instruct PwP. He is joined by assistant instructor Jessica Bush-Burke, who has an extensive background in physical fitness training and dance. This team has put together an array of Parkinson’s based exercises to throughly challenge each participant. Scott believes “Movement is not only medicine, but it should also be fun.” He says many participants tell him that during the hour they’re in his class, they forget they have Parkinson’s. He also cites the fantastic results they’re seeing. “We have individuals who, when the class started last October, were coming to class fairly immobile, almost on walkers. They had to be helped to sit down and stand up to do the exercises. Amazingly, they are now walking in under their own power and can pretty much sit and stand on their own. It truly is remarkable.”
The adaptive fitness class is held at The Club on Tuesdays and Thursdays from 1:00-2:00 p.m. and is free for both PwP and their caregivers. Caregivers are very much encouraged to workout also. For more information, call 912.638.5600.
To get involved with the Parkinson’s support group, PwP and caregivers are invited to the meetings held every first Thursday of the month in the Thorpe Building at the St. Simons United Methodist Church at 624 Ocean Blvd. For additional information, email glynncountyparkinsons@gmail.com.
