Some two years after being diagnosed with Parkinson’s disease, Johnny Hulsey, aided by his wife, Jennifer, continue their efforts to raise awareness of the disease and to help other families in Northwest Georgia.
The couple, who reside southwest of Cedartown, organized a charity walk last year. The event returns on April 18 to downtown Cedartown and should be larger than before.
“This year it’s a little different,” Jennifer Hulsey said. “We’re going to walk from The Depot to Peek Park. We’ll have a concert from 10:30 a.m. until it’s dark.”
The event begins at 10 a.m. The Hulseys expect hundreds of participants to come from all across Northwest Georgia. Some are traveling even further. The Hulseys said it’s the only walk of its kind scheduled this year in Georgia, other than one in the Savannah area.
“We hope people will come out and support this,” she said. “This is not about Johnny and I. It’s about providing hope to families.
“The goal is to raise awareness and to let people know that someone cares about them.”
More sponsors are being sought. The $100 sponsorships are recognized on T-shirts that will be provided to walk participants. It costs $10 to take part in the walk (which includes the T-shirt).
Parkinson’s disease is a chronic progressive neurological disease that affects a small area of nerve cells in the brain. These cells normally make chemicals that transmit signals between areas in the brain that coordinate smooth and balanced muscle movement.
Parkinson’s disease causes these nerve cells to die, and as a result, body movements are affected.
Approximately one million Americans have Parkinson’s disease, including three out of every 100 people over the age of 60. The average age at which it is diagnosed is 60. However, about 10 to 20 percent of those diagnosed with Parkinson’s disease are under age 50, and about half of those are diagnosed before age 40.
Mr. Hulsey, now 44, was diagnosed with Parkinson’s on his 42nd birthday. He has what’s known as Young Onset Parkinson’s.
The diagnoses, which came after six years of mysterious and worsening problems, came as a shock to the family. After all, Parkinson’s has typically been seen as something that affects older people.
However, the diagnosis was also something of a relief, Johnny Hulsey said. At least he finally knew was was wrong with him.
The disease symptoms began with aching joints and muscles. He was always tired.
There was doctor after doctor and test after test, but no one could quite pinpoint what was making him sick.
And then one day, he noticed he was shaking.
“My arm would start jerking, and my legs,” he said. “I couldn’t sleep at night. I couldn’t relax.”
The diagnosis was made by Dr. Bill Naguszewski, a neurologist in Rome. The Hulseys said Naguszewski has been an invaluable resource.
“He really worked hard to help us find the right doctors,” Mrs. Hulsey said.
In the two years since his diagnosis, Mr. Hulsey has been managing his condition with medication. It helps, but he notes. “I’m nowhere near how I was” before the disease.
No one is sure what causes the disease. There is debate about whether the condition is primarily genetic or environmental.
Hulsey used to work in the paint and dye industry, including a number of years in a laboratory setting. Exposure to industrial chemicals — while not a suspected cause by itself — is a possible trigger.
Still, researchers are not close to finding a cure.
What’s needed, Mr. Hulsey said, is a better database to help researchers center in on possible contributory causes to Parkinson’s disease. That’s one goal of the support group to which the Hulseys belong: The Northwest Georgia Parkinson’s Disease Association, based in Rome.
“Only two states actually have a registry (of Parkinson’s patients),” Mr. Hulsey notes. “Those are Nebraska and California.”
There is a bill pending before the U.S. House of Representatives to form a national registry. The Hulseys support that legislation, HR 1362.
"It is specifically for a registry for Parkinson's and MS (muscular dystrophy)," Mrs. Hulsey said. "“It is estimated that 2 million people have Parkinson’s,” Mr. Hulsey said. “But no one has any real numbers.”
Congressman Phil Gingrey has been very supportive of their efforts and of HR 1362, the Hulseys said, along with Sen. Johnny Isakson.
The disease remains unseen and unnoticed by many, but it affects many families.
In Polk County alone, Mrs. Hulsey said there are approximately 3,100 families who are affected in some way by Parkinson’s disease.
It’s a disease that affects an entire family because, as in Mr. Hulsey’s case, the disease progresses to the point of being debilitating. The ability to drive a car may be lost, along with a career. Incomes are affected. Spending priorities are changed.
Through all the challenges the Hulsey family has faced, Mrs. Hulsey said they have found strength in their faith.
“People ask me ‘How?' and I point to the sky and say ‘God,'” she said. “You have to have a lot of faith.
“You have to try and enjoy each day, because that’s what we have.”
The Hulseys have three children. Chad, 20, is off at college in Atlanta; Kayti, 14, is an award-winning student and their youngest, Will, is 6.
Parkinson's disease contacts:
For more information on how to register, call Jennifer at 770-546-0286.
For more information about NWGA Parkinson’s Disease Association, call James Trusell, chief volunteer officer, at 706-413-3264.
Find a support group near you:
Rome Support Group:
Meets the first and third Tuesday of each month beginning at 6 p.m. at 5th Avenue Baptist Church Fellowship Hall, Rome.
Polk County Support Group:
Meets the second Thursday of each month beginning at 6:30 p.m. at the Polk Medical Center Community Room.
Calhoun Support Group: Call 706-413-3264 for meeting information.
Dalton Support Group:
First Meeting will be held on Tuesday, April 8. Meets the second Tuesday of each month beginning at 6:30 p.m.
Dalton Senior Center:
Tai Chi Exercise Program. Mondays beginning at 6:00 p.m. at Floyd Senior Adult Recreation Center.
Call 706-413-3264 for more information on any of these programs or visit our website at: