About Us > Press Room > NPF In The News > 2012 > June > A ‘moving day’ for those with Parkinson’s disease

A ‘moving day’ for those with Parkinson’s disease

6/16/2012

Read about Moving Day Kansas City, the walk for Parkinson's organized by the National Parkinson Foundation and its local chapter, the National Parkinson Foundation Heartland Chapter.

Event emphasizes that as awful and debilitating as the disease can be, a diagnosis shouldn’t signal surrender.

After 59-year-old Debra Callaway pedals her way through, say, a 40-mile bike ride, she will admit to feeling a tad tuckered out.

Such is life with Parkinson’s disease.

“I wish I didn’t have Parkinson’s. Parkinson’s stinks,” said the retired teacher from Shawnee. “I just don’t dwell on it.”

That no-pity, no-rest attitude anchored an event Saturday in Prairie Village put on by the Parkinson Foundation of the Heartland. The group’s Moving Day aimed to emphasize that as awful and debilitating as Parkinson’s disease can be, a diagnosis shouldn’t signal surrender. The event drew about 500 people.

Callaway still was teaching when the telltale tremors in her right hand first set in.

“It would freak out my students,” she recalled. “It didn’t hurt. … It was just weird.”

She eventually went to her family doctor, who sent her to a neurologist. At 55 — most Parkinson’s sufferers get hit after age 65 — she was given her diagnosis.

It was a gut punch. Her own father had the disease, and she had seen its terror fast reduce a rugged hunter and fisherman who cut his own firewood to a man so debilitated he couldn’t feed himself.

Yet it’s hard to imagine her so similarly struck down. This is a woman who had run marathons. And triathlons. She will still attack a half Ironman event: a 1.2-mile swim followed by a 56-mile bike topped off with a 13.1-mile run.

In many ways her life with Parkinson’s disease has proceeded much as it was planned when she was simply an extremely active person before. She retired according to a previous schedule at age 57. And as she and a close handful of friends had long said they would do, Callaway took a monumental bike ride when she retired. Two years ago — and two years after she was diagnosed — Callaway and three other women biked from San Francisco to Yorktown, Va. They moved at an average clip of 64 miles a day over eight and a half weeks.

She’s still on the move. A typical day means a bike ride measured in the tens of miles. Maybe an hour of yoga. And time at an easel with oil paints crafting a still life.

And yet there’s little still about her or many of the others drawn to Saturday’s event in Prairie Village.

That’s not to overlook the horribleness of Parkinson’s disease. It’s a progressive degeneration of the brain and central nervous system that can cause muscles to shake involuntarily and interminably. Or it can make muscles lock tight with stiffness. The handwriting goes. Walking turns to stumbling, which turns to sitting.

But Callaway imagines her prospects to be better than her father’s. The drugs and treatments are better.

She feels the fatigue, although it’s hard to sort out natural aging from the disease or the side effects of the drugs she takes three times a day.

Besides, Callaway said, it’s not as if she has a choice about the disease.

“If I live long enough, it will probably get me,” she said. “But I don’t think about the future much. I have a loving family. I’m making the best of it.”