DISABILITIES

By Daniel J. Vance

The National Institute of Neurological Disorder and Stroke website claims that about two million Americans experience neuropathic pain, which is chronic pain resulting from damage to the nervous system. The damage can come from spinal cord trauma, multiple sclerosis or stroke, for example.

Elaine McNamara, 51, of Green Bay, Wisconsin, reads this column in the Green Bay Press Gazette. About 18 months ago she injured her upper spine after going head over handlebars while riding her bicycle. "If I hadn't been wearing my helmet, I likely would have died," she said over the telephone.

Initially, she couldn't feel her legs and had a burning pain in her hands. A week later, the feeling in her legs finally returned, but the same burning pain accompanied it. A doctor told her the pain would leave, perhaps within six months, but it didn't.

"It's a constant pain," she said. "Trying to describe my neuropathic pain is like trying to describe a color to someone blind their whole life. It's sort of a burning, sort of a freezing sensation. Sometimes it feels like my whole shirtsleeve is wet. The only pain that is vaguely similar to it is that of hitting your funny bone really hard. That's a bit what it feels like in my hands, arms, legs and feet all the time."

The pain never goes away. Doctors have tried various drug combinations, but none work well.

"I fell in February 2004 and hit the side of my knee," she said. "My balance has been poor since the accident and I fall often. Now I'm in a wheelchair all the time and am getting progressively worse." She fell again last December.

She said that every time she falls, she acquires the same burning pain in the area of her injury. It doesn't go away, even after the injury outwardly heals.

Unpleasant as her pain is, in one way it has positively changed her. "It certainly has prioritized my life," she said. "Before I didn't have time for anything or anybody. I was selfish. I see now what I should have been like all along. And I'm glad I didn't die the way I was. I have things to do yet before I die."

One frustrating aspect of her neuropathic pain, she said, has been dealing with people who doubted her sincerity because they couldn't "see" her disability.

For more, see www.danieljvance.com or www.ninds.nih.gov