One of the difficult responsibilities a physician faces in treating a patient with Lou Gehrig's disease is answering the question "What does this mean?"

(Photo caption: Marty Price, left, talks with her husband, Ed, at their home in Louisville. )

When Marty Price was diagnosed in June 1997, no explanations were necessary. In 1986, her brother, James "Doc" Simpson, then principal at West High School, came down with the insidious illness, and died just a year later.

Lou Gehrig's disease, as it became known after the famous New York Yankees first baseman died of it in 1941, is a rare muscle-wasting disease officially known as amyotrophic lateral sclerosis, or ALS. It is atypical for ALS to strike more than one family member, but there was no doubt about it: Marty Price, who helped nurse her brother through progressively debilitating stages - wherein the body muscles "freeze" while leaving the mind intact - was facing the same prognosis.

She says it is precisely because she knew what was ahead that she refused to dwell on negatives or turn her back on reality. Family and friends continue to marvel at her spunky attitude, admitting she had every good reason to fold her tent and give in. After all, her brother had gone so quickly.

One of the reasons Price insists on "keeping on keeping on" is because she wants other people with ALS to know that help is on the way. Working in tandem with her mind-over-matter attitude is the fact that Price, who was 60 when her diagnosis came, has been participating in a trial program for ALS victims at Johns Hopkins University Medical Center. She is convinced the experimental treatment controlled the progression of her disease and lessened some of its more debilitating symptoms, including an inability to swallow, common among ALS patients.

Unfortunately, the drugs used in the trial have as of this summer been pulled by the U.S. Food and Drug Administration because, as Price was told, they are so expensive and the data wasn't good enough to justify the cost.

"I guess not enough people improved," Price says. "But I know I did."

Medical professionals assure her they are on the edge of a breakthrough for ALS sufferers. Meanwhile, after getting off the free drugs used in the studies at Johns Hopkins, Price depends solely on Rilutek, which she says is the only ALS medication approved by the FDA and costs about $786 a month.

Price, 65, lives in Louisville and for 23 years worked in insurance services at the University of Tennessee. She doesn't like the title "hero," and she admits to having an occasional "pity party," but those are private moments, never lasting more than a minute or so, she says. In such instances, no one in her family or circle of friends is ever invited.

Two of her friends, Brenda McClennan and Jane Weeks, met Price at a water aerobics class at the Blount County Wellness Center about four years ago. They had no idea the extent of her illness, although they knew her arms were weak and that she had to be helped into the pool.

"She was just like the rest of us," says Weeks, "joking and exchanging stories."

In time, however, Price could not do the aerobics, so Weeks and McClennan began visiting her at home, where Price's husband, Ed, had, at this point, become full-time caregiver.

"They are both outstanding people," says McClennan. "Most people that sick would go around with a sour face and be bitter. Not those two."

Perhaps the highest tribute to the courageous story unfolding day after day at Marty and Ed Price's home comes from their daughter, Diana Frew, who writes from her home in Miami: "ALS is one of the most horrible diagnoses anyone can suffer. She has been amazingly positive and a role model for me.

"After watching her ... I know I can face anything that life has to present, and I can only hope I give my children a portion of the faith, love and hope that she continuously demonstrates. My stepfather is so dedicated to her and provides total care daily. He has never despaired or fretted and he just does what has to be done without a second thought. I am truly honored to have such loving, strong and determined parents, and I thank God daily for the blessings we have."

As for what Marty Price has to say about all this, she takes no credit and wants no praise.

"Anyone with ALS is a hero," she says. "Mark my word. It's true."

Copyright 2002, KnoxNews. All Rights Reserved.