ALS sufferer raises awareness
Published 7:58 pm Tuesday, May 12, 2015
Vondelear Barnes says she never would’ve thought she would be one day be diagnosed with amyotrophic lateral sclerosis, or ALS — the reason for those ice bucket challenges that swept America last summer.
The 50-year-old graduate of the former John F. Kennedy High School said she hadn’t previously experienced any other real health problems.
Because cancer runs in the family, Barnes thought her health crisis, if any, might have been breast cancer. But not ALS.
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Otherwise know as Lou Gehrig’s disease, after the baseball great who was diagnosed with it 1939, it’s a “progressive neurodegenerative disease” affecting the brain’s nerve cells, according to the ALS Foundation.
With the progressive degeneration of motor neurons, which carry messages between the brain and other parts of the body, sufferers are left without muscle control.
As the disease progresses, they can become totally paralyzed.
Barnes decided to go public for ALS Awareness Month, supported by work colleague Janice Woodard. At Suffolk Pediatrics, Barnes continues to work full time as a receptionist, while Woodard is a nurse practitioner there.
Barnes said her symptoms started almost a year and a half ago with a painful back: a common enough complaint. She also had foot swelling, but she put that down to the after-effects of recent surgery.
“Then my hands started bothering me, but I thought I probably had carpal tunnel (syndrome),” Barnes said.
She had also suspected arthritis, she added, which her grandmother had.
When she could no longer tie her shoelaces, Barnes grew more concerned. She said a specialist told her pointblank they didn’t think it was arthritis — they didn’t want to make her panic, but the symptoms looked like multiple sclerosis.
After she saw three neurologists, MS was ruled out, she said, because she didn’t have brain lesions. “The last one did an EMG (electromyography), and I had to go back twice to be diagnosed.”
That was in February, Barnes said. She was given two to five years to live.
Woodard, her friend of 11 years, has become Barnes’ advocate in raising ALS awareness. One of her first steps is a fundraising Web page, All Love Surrounds Von (search “Von Barnes” at www.youcaring.com).
Barnes’ family and friends are holding a chicken dinner at the clubhouse at 201 Burnetts Way on Saturday from noon to 3 p.m., with plates of chicken, macaroni and cheese and green beans, along with dessert, for $7.
A youth group will be selling ALS awareness bracelets outside the North Main Street Walmart from 9 a.m. to noon on Saturday, May 23.
At Barnes’ home, Woodard said, volunteers built a ramp worth more than $2,500 and made some changes in the bathroom to improve access.
“Her home is definitely not handicapped accessible,” Woodard said, adding that as the disease progresses, her friend may have to buy or rent a new home that better meets her needs.
Caring for Von Barnes at home are her husband William and 23-year-old daughter Jasmine, but she may need the services of a nursing home later, Woodard said.
Woodard said she has learned that several of the 30,000 Americans estimated to have ALS live locally.
“I have a friend in Smithfield I grew up with whose husband passed away with ALS last fall,” she said.
“In the process of telling some of our patients at work about Von, I found out there was one in Windsor and two others in Smithfield. I think there are six cases in Suffolk and Isle of Wight County that I have heard about.”
Studies have shown military veterans are twice as likely to develop the disease.
Barnes said she’s taking it day-by-day. “If I’m tired, I sit down,” she said. “I’ll keep working as long as I can.”
She advises folks to not “blow it off” if they experience unfamiliar symptoms.
“Don’t take life for granted,” Barnes added.
To learn more about the disease, visit www.alsa.org.