WALK HOPES TO RAISE $16,000 FOR MS SOCIETY

Robin White looks healthy now, but she lives with the knowledge her body is working against her.

White has multiple sclerosis, a chronic, often disabling disease in which the body's immune system turns against the central nervous system, destroying the connections between the brain and the body

"You lose control over what your body is doing," said White, chairman of the upcoming MS Walk fund raiser.

White is in remission, but she's been to the point where her daughters have had to feed and dress her.

Living with MS can be tough, physically and psychologically, she said. It helps to have family support, church support and community support.

One way the community can help is through the April 9 MS Walk, where participants find sponsors who will pledge money. This area's walk, which will be held at Arena Park in Cape Girardeau, is being held on the same day as walks across the country.

Money raised will be used for research into the cause, treatment and, hopefully, a cure for MS, White said. The local goal is to have 300 walkers and to raise $16,000.

Raising money is only one goal of the walk. The other is to raise awareness of MS.

Many people confuse MS, a neurological disease, with MD or muscular dystrophy, a disease that affects the muscles, said Tim Bender, who has MS and is helping White with the walk.

Even some doctors are not educated about the symptoms, diagnosis and treatment of MS, Bender said.

While MS was recognized as a disease in 1873, research still hasn't discovered its exact cause, though it is now generally accepted that MS involves an autoimmune process that destroys myelin, the fatty sheath that surrounds and insulates the nerve fibers, according to the National Multiple Sclerosis Society. This destruction causes the nerve impulses to be slowed or halted and produces the symptoms of MS.

When White speaks to school and civic groups about MS, she has them envision nerves as electrical cords and the brain as the outlet those cords are plugged into. With MS, the cord's protective coating is destroyed, causing short circuiting that disrupts the current.

"Your brain may be telling your leg to move, but your leg doesn't get the message," she said.

Symptoms of MS, which affects some 355,000 people in the United States, can vary greatly from patient to patient and can get progressively more serious. Symptoms may be mild such as numbness in the limbs or severe, such as paralysis or loss of vision.

It can be a difficult disease to diagnose, because there is not a simple blood test or screening, said Bender, who was diagnosed with MS 11 years ago.

The development of the MRI has made it easier to diagnose MS, he said. An MRI can reveal lesions on the brain caused by MS, but even that must be backed up with other tests such as evaluation of spinal fluid or eye tests.

White said people don't always understand what is going on when they see an MS patient.

She remembers attending an activity at her daughter's school when her symptoms were especially bad.

"I couldn't walk, so I was in a wheelchair. I had on a neck brace because without it I couldn't hold up my head. My speech was slurred and I was having tremors," White said. "One child asked my daughter, Aren't you embarrassed that your mom would come out like this?' My daughter said, No. That's my mom and I love her.'"

Lack of knowledge, lack of acceptance, those are some of the everyday issues people with multiple sclerosis must face, White said.

There is an MS support group that provides information and support for those with MS. The walk is a way to get the word out about the group that meets at 10 a.m. the third Saturday the month at St. Francis Medical Center.

There are drugs to treat the symptoms of multiple sclerosis, but the treatment is costly, White said.

A three-drug combination slows the progression of the disease, but many patients can't afford the $1,000 a month the medicines cost, she said. The treatment isn't covered by most insurance companies or Medicaid/Medicare.

More research is needed on treatment, but Bender and White said it would be even better to find a cure.

There will be a petition at the MS Walk to urge the federal government to spend more money on MS research.

"We've seen changes through research and feel we are closer than ever before," Bender said.

MS WALK 2000

What: An areawide fund raiser for the Multiple Sclerosis Society. Walkers find sponsors who will pledge money for the walker.

When: April 9. Registration begins at noon. Walk begins at 1 o'clock.

Where: Shelter 3 at Arena Park.

Call: To register or for more information, call Robin White at 243-3913 or Tim Bender, 335-5954.