Don Denton hasn't walked for 15 years. "It has totally wiped out my ability to walk or even stand. It causes trembling and muscle spasms all over my body", he explains. Multiple Sclerosis hit him quickly; taking his legs, his job, and his first marriage, but he says his happiest years have come since the wheelchair, when he met Tammy. She says, "The thing that's frustrating is that usually people pity us. We have a wonderful life together, He's a great partner. We've been married almost 9 years and we feel very blessed."
Don has learned to cope with his limitations.He rides Citibus daily to the YWCA for an exercise program that would challenge most of us. The bottom line, he's happy. However, there are many more M-S patients, perhaps hundreds of thousands, who are still walking, and wondering for how long.
People like Rachel Smith: "I started going numb on my right side. And I started having trouble holding on to things. I went legally blind for four months when I was 14", she says. To look at Rachel, you'd think she is fine now. She still has M-S, but her eyesight is back to normal and the disease is in remission. Rachel says working with three year-olds makes her smile a lot, but like most patients, she lives with a fear that tomorrow she could wake up with another flare-up. "You always think about what could happen", she explains. "It's hard for me to be around other people in a wheelchair. It shows me the bad side of it."
In M-S, the insulation that protects the nerve path is destroyed. So, all sorts of things can go wrong when the nerve is exposed in the brain and spinal cord. Dr. Randolf Schiffer, a Neuropsychiatrist at the Texas Tech Medical Center, says we think of the physical challenges of M-S, but the psychie of the illness can be just as debilitating, not knowing if it will take your eyesight, your balance, your mobility, your dignity. "100 years ago", he explains, "when M-S was first recognized and described, there were 2 famous neurologists. One of them said, 'in its infancy, the name we give to M-S is hysteria.'"
So, if there's no way to predict how bad it will get... and no place to go for a cure... why ask for a diagnosis? That's the kind of question Dr. Schiffer likes because he feels passionate about the answer. "The disease is now treatable", he says. "We have drugs that can make a difference. They can change the course of the disease." Rachel takes Avonex, a shot every five days. For her, it means a boost of confidence that she has some control over her future. Aside from Don's medication, his therapy includes swimming, a boost of self-esteem every day that he still has his independence.
Both are hopeful that national fundraisers like the M-S Walk will bring millions of dollars for research and millions of walkers for support of those who may -or may not- fit the picture of a patient with M-S.