More MS news articles for April 2001

Challenge spurs MS pain study

Woman reviews ways patients cope

Register Staff Writer

Iowa City, Ia. - Multiple sclerosis has attacked Cheryl Stone's spinal cord, but it can't touch her backbone.

Stone, a career counselor at the University of Iowa, has joined professional researchers in fighting the nerve disorder. She is the co-author of a study on MS pain that will be printed in a medical journal this summer.

Such publication is a rare feat for an amateur. Stone traces the root of her success to a spat she had with her husband a few years ago, when she was having trouble coping with the disease.

"I had gone through an awful lot of pain," she recalled. "I'd be in tears - they'd be just rolling down my face." Gerald Stone challenged her to quit complaining and instead use the energy to do something constructive. "He said, 'Why don't you put your money where your mouth is?' " she said.

First Cheryl Stone got angry. Then she got to work.

She pored through medical books and journals to find out about multiple sclerosis. The disease damages insulation around nerve fibers, allowing vital impulses to leak out. That can lead to numbness, fatigue, vision loss and inability to control muscles. Some people are severely debilitated by it. Others have relatively minor attacks, followed by recovery.

The problem seemed simple enough. "I call this the stupid disease," Stone said. "You look at it, and you say, 'This is just like a bad electrical circuit. Why can't they fix it?' "

So far, doctors can't fix it, although they have new drugs that can ease many victims' suffering.

Stone, 58, saw a need for research on ways patients could deal with the pain that can accompany the disease. She knew medicine, yoga and exercise helped her, but she didn't see any systematic studies on what others were doing.

She asked her daughter-in-law, U of I graduate student Carolyn Heckman-Stone, to help set up a study of techniques MS patients use to fight pain.

Heckman-Stone agreed. She was interested in pain issues as part of her studies to become a psychologist. She knew her mother-in-law would not be deterred.

"She's very persistent, and she finds a way to get things done," Heckman-Stone said. "She doesn't take no for an answer."

The women wrote a questionnaire asking people to describe their pain, list the ways they deal with it and rate the effectiveness of their efforts.

The two first submitted the questions to scientific experts, who recommended changes and ways to conduct the survey. They then distributed revised questionnaires to Iowa members of the Multiple Sclerosis Society, gathered the answers and analyzed the results.

Their study has been accepted for publication in the Journal of Pain.

Stone's doctor wasn't surprised to see Cheryl Stone set out on such an ambitious project. "She's a marvelous person," neurologist Richard Neiman said. "I really respect the way she pushes the envelope."

Neiman sometimes has new MS patients sit down with Stone to talk about ways to cope with the disease. He said she is an example of positive attitude and dedication to exercise and treatment.

Stone also is an example of someone who makes the most of good fortune. She has been spared some of the most devastating symptoms of multiple sclerosis, including vision loss and inability to think straight. She doesn't take her luck for granted.

She will retire in June and move to California with her husband. She hopes to use her free time to set up a more in-depth study of MS pain, with a larger pool of patients to provide firmer numbers.

Next time, Stone probably won't have the help of her daughter-in-law, who is busy with other academic projects. But she is confident she can carry on alone. She has helped organize workplace surveys in her job as a career counselor, and she is familiar with statistical methods as the wife of a longtime University of Iowa psychology researcher.

She goes to the effort even though there's no financial or professional benefit.

The benefit, she said, is personal. By joining the quest to understand multiple sclerosis, she takes some of the sting out of its attack on her body.

"If you can take your mind off your own problems and start helping other people, you start healing," Stone said.