The inaugural Treasure Coast Walk n’ Roll to Cure Ataxia will be at Tradition Square on Saturday, May 19. Organizer Lisa Cole said the event is a fundraiser, but more importantly an awareness raiser.
“There is no cure, but there are things we can do in the meantime to help slow it down,” she said. “They’re doing a lot of clinical trials, so things are looking good.”
Ataxia is a degenerative condition with several causes that affects the nervous system. It diminishes people’s voluntary muscle control. Like many neuro-muscular conditions, ataxia affects people differently. Some with it must use wheelchairs. Others don’t. Some can drive. Others can’t. The condition is usually progressive.
Cole said she was showing signs of ataxia for many years before her diagnosis. The former motocross racer was running an accounting business. But, increasingly, a seemingly small thing was getting her attention. Something about her gait was odd.
“I complained about it for over 10 years – that I was walking funny,” she said. The odd walk was worsening. “(I was) walking into doorframes a lot and walls,” Cole said.
But concern was mixed with denial. “In the early part of 2013 I did a stress test and almost fell over,” Cole said. “I blamed it on my knees. I went to an orthopedist, and he said, ‘No it’s not your knees,’ and he sent me to a neurologist.”
That started Cole toward getting a diagnosis of ataxia. “There are many types of ataxia and I have the hereditary type,” she said. The National Ataxia Foundation reports that about 150,000 Americans have the various forms of ataxia. Ataxia has genetic and other causes. Symptoms can appear at any age, although Cole said approaching and entering middle age seems to be a common time for symptoms to become obvious. The symptoms often mimic intoxication, such as slurring speech.
Cole said in addition to her degenerating walk, she noticed another common ataxia clue over the years. “Your handwriting, because it’s your cerebellum,” she said. “My handwriting was starting to get worse.”
Cole was 46 when she was diagnosed in 2013. The condition has worsened since then. “I can’t ride a bicycle or walk more than 15 minutes,” she said.
Additionally, she must use a cane to walk. Cole, however, said she’s working hard to remain ambulatory. She does pilates and has a personal trainer working with her with gym machines regularly. “Exercise is helping me a lot,” Cole said.
Free registration for the walk will open at 7 a.m. The walk around Lake Tradition will start at 8 a.m. “We have an instructor who’s going to help with stretching before and after the walk,” Cole said. After the walk there’ll be music, a silent action, and more. “I have a clown that’s coming,” Cole said. “He’s going to be walking around.”
There will be free T-shirts, too. While the walk and shirts are free, Cole said the event is a fundraiser to benefit the National Ataxia Foundation. Donations are urged.
The event will end at noon. Tradition Square is by Tradition Town Hall, 10799 SW Civic Lane in Tradition.
Cole is also a local support group leader.
More about ataxia is at www.ataxia.org. Cole is at [email protected]. Early registration is available, but not necessary, at www.ataxia.donorpages.com/WalknRoll2018TreasureCoast.
