Ineda Roe's disease moved into her life without much fanfare a couple of years ago, so quiet and sly that at first Roe mistook it for something else.
The initial symptoms could have meant anything, or nothing. She was tired; she was hoarse; she had trouble grasping her gardening tools. It could have been arthritis.But, gradually, Roe began to see other changes. She would be walking with her husband and her foot would land on an irregularity in the sidewalk and she wouldn't be able to catch herself from falling. She began to suspect that something was really wrong. She began to find clues.
One day, reading the newspaper, she saw a letter to the editor from a family whose mother had been treated well by the staff at University Hospital. The letter listed the symptoms of the mother's disease, which looked alarmingly like Roe's. A checkup a few weeks later confirmed her diagnosis.
So Roe finally had a name for the weakness that was slowly invading her body: Amyotrophic lateral sclerosis, also called ALS, known most often as Lou Gehrig's disease.
ALS is a form of muscular dystrophy. That makes Roe, at 70, one of "Jerry's Kids," the ones comedian Jerry Lewis makes pleas for on his telethon each Labor Day Weekend.
ALS is one of 40 neuromuscular disorders served by the Muscular Dystrophy Association. Others include spinal muscular atrophy, Duchenne muscular dystrophy (one of the most common forms of muscular dystrophy), myasthenia gravis, Friedreich's ataxia and polymyositis.
The Muscular Dystrophy Association, in addition to supporting research, provides help for medical services not covered by insurance.
There are plenty of theories to explain why someone like Ineda Roe gets ALS. It might be a slow-acting virus. That seems to explain clusters of the rare disease, occurring for example in three teachers who used the same classroom. But scientists also wonder if maybe ALS might be caused by exposure to heavy metals or by severe physical trauma. Only about 5 percent of people who develop ALS have a family history of the disorder.
ALS is as predictable as it is mysterious.
"Everybody who talks to you to bolster you up mentions (British physicist) Stephen Hawking," says Roe. But Roe knows that Hawking's longstanding battle with ALS is an exception. For most people the prognosis is three to five years.
She also knows that even Hawking, although he continues to write and theorize about the nature of the universe, is completely immobile now and has become so weak that he can't speak.
Roe, who was diagnosed last November, can feel her disease slyly robbing her, too. There are no violent attacks, no fevers, not even any pain. But life gets increasingly more difficult. She gets tired now walking the length of ZCMI. She has to put the cards on her lap when she plays bridge. It's hard to tear a postage stamp off a sheet.
Roe explains these limitations matter-of-factly. It's when she puts them all together and takes them to their logical conclusion that she loses her composure.
"The dying doesn't bother me," she explains. "It's the dependency. Having to have people wait on me."
Her friends and husband have been very supportive and respectful, she says. When they ask how she is she tries not to dwell on the heaviness of it all. "I don't really want people hovering over me," she says.
For 14 years the executive director of the Utah Developmental Disabilities Council until she retired five years ago, Roe says she has developed a new understanding of what so many people go through every day as they face handicaps and death.
She is trying to be as active as she can while she is still able, she says. She and her husband plan to take some trips. She goes to lunch with her friends. She will put off getting a wheelchair for as long as she can.
And she thinks of the bright side. She'll never become paralyzed. Her memory will stay sharp. "So, there are worse things," she says.- The Muscular Dystrophy Association sponsors an ALS Support Group on the second Wednesday of each month at the West Valley Library, 2880 W. 3650 South, at 7 p.m. For more information about ALS or other neuromuscular diseases, contact the MDA, 944-1661.