MULTIPLE SCLEROSIS Learning to cope

By WILLIAM K. ALCORN
VINDICATOR STAFF WRITER
NILES -- Becky Wilson sat on her bed crying, stuck with her T-shirt half on and half off, frustrated and in pain.
But she kept trying, and 15 or so minutes later, the shirt was off and she was no longer trapped in her own clothing.
For Wilson, who has multiple sclerosis, the T-shirt episode provided yet another of the many lessons her disease has taught her.
Make sure your shirts stretch easily, she said with a tremulous smile, as she recounted the not-so-funny-at-the-time incident.
Wilson, 48, realizes now that she has had MS symptoms since she was a child. But, at age 20 she developed an irregular heartbeat and she was misdiagnosed with a heart valve problem, called mitral valve prolapse syndrome.
After seeing numerous heart specialists and other doctors over the years, she went to the Cleveland Clinic.
"The doctor listened to my heart, and said the valve was not the problem. He thought I had MS," Wilson said.
She went to Dr. Holly Maggiano in Howland, who prescribed an MRI, and on May 20, 1997, was diagnosed with MS.
"It was a relief to finally have an answer," she said.
Affects nervous system
Multiple sclerosis is a chronic autoimmune disease of the central nervous system in which gradual destruction of myelin occurs in patches throughout the brain or spinal cord or both, interfering with the nerve pathways and causing muscular weakness, loss of coordination, and speech and visual disturbances, according to a definition on the Internet.
Symptoms of MS are unpredictable and vary from person to person and from time to time in the same person, said Dawn Mitchell, group leader of the Trumbull-Mahoning Day Group MS support group.
Mitchell said some with MS are still able to work and might have a flare-up every 10 years. But, she said, all people with MS have flare-ups, or relapses. Also, she said most people with severe MS experience muscle spasms.
Mitchell recommended that anyone with MS get involved in a support group.
"You find out you are not the only one with particular symptoms, and you learn what others are doing to cope. It's also a reason to get out of the house and socialize without being stared at," she said.
Wilson, who also is no longer able to work, wants people to be aware that MS is a leading disabler of young adults, particularly women.
She said some people with MS might look fine, but others don't understand the "incredible, sometimes unbearable challenge it is to get through the day."
Had symptoms in childhood
Wilson lived in Vienna until she was 2, at which time her family moved to Niles. She graduated from Niles McKinley High School in 1976.
She remembers that in the fourth grade at St. Stephen School, when she was playing and running, her legs would weaken and have the strength of "cooked spaghetti. I thought that was the way it was supposed to be."
Her current symptoms include numbness in her hands, blurred vision and difficulty concentrating. She suffers from memory loss and muscle spasms.
"Sometimes I don't know where I'm going or why I'm where I'm at. I have to look around a store at the decorations to know what season it is," Wilson said.
She has unrelenting, grinding, debilitating pain, which began five years ago in her legs below her knees, but now affects her entire body.
"The pain ranges from bad to off the charts. When it surges, it feels like you are being dropped into a meat shredder or lying in hot coals. It'll simmer down, but it never stops," she said.
Had to give up job
Wilson has worked as a waitress and supervisor at the former Friendly's restaurant in Niles, as a bookkeeper at the former McKinley Federal Savings and Loan, and as a secretary at Washington Elementary School in Niles and in the Niles McKinley High School athletic department, a job she said she loved.
"You fight so hard to keep your job. I qualified for disability three years before I went on it," she said.
Wilson, who has two adult sons, Nathan and Ryan, is fighting back the best way she knows how. She sought to be interviewed for this story, even though she is very uncomfortable in the spotlight, to "put a face on MS" and make people more aware of the disease.
Also, she serves on the legislative committee of the National MS Society, Ohio Buckeye Chapter, and is very pleased that March was designated by the state Legislature as Multiple Sclerosis Awareness Month.
Ohio is the first state to recognize a month for MS awareness, according to the Ohio Buckeye Chapter.
Wilson, while she very much wants to benefit from a cure, said that with everything she has gained from having MS, she wouldn't trade it away for anything.
"I wouldn't have met the people I've met, and gained the personal insight about myself. Even with the loss of so much physical and cognitive function, you learn you still have value."
alcorn@vindy.com