Woman struggles to cope with Lou Gehrig’s Disease

By Linnea McClellan
Media General News Service
Published: May 20, 2008

At first Carole Scott thought she was growing clumsier as she got older.
On her daily three-mile walk or exercising on the treadmill, she found herself tripping.
“When I realized I couldn’t do aerobics, I knew something was wrong,” Scott said.

Although the disease Amyotrophic Lateral Sclerosis—also called Lou Gehrig’s Disease after a well-known baseball player who had the illness—runs in her family, Scott, 45, tried not to think it might be her turn. But soon she was on her way to the Mayo Clinic in Jacksonville, Fla., to consult with a specialist.
Now almost a year later, the wife and mother of two sons relies on a wheelchair to get around. She’s learned that such simple excursions as shopping for clothes are a major ordeal. Even getting into some public restrooms is difficult.
“The aisles in stores often aren’t wide enough for my wheelchair,” she said. “Just because a sign says it’s handicap-accessible doesn’t mean it’s wheelchair accessible.”
Most days Scott said she feels fine physically, although she tires more easily. But coping with the idea of being an invalid with a degenerative disease is another matter for both Carole and her husband Johnny. She cries more easily than before, partly from despair and from the roller coaster of emotions that can accompany the illness.
“You have to stay upbeat, positive, to get through it,” Johnny said, although he admits the illness is difficult for caregivers. He works from home in sales and marketing but rearranges his schedule to accommodate Carol’s needs.
“As bad as this disease is, there are worse ones, like Alzheimer’s,” Carole said.
Knowing her experience could help others motivated Carole and some of her family members to participate in a project through the Mayo Clinic in Florida to help researchers learn more about the disease.
They’ve also benefitted from meetings of the Southeast Tri-State ALS Support Group, where they socialize with others who have the illness and get advice from visiting speakers. Carole also suggests getting involved with related groups like the Muscular Dystrophy Association to widen the support network.
Members often come looking for answers when they’re first diagnosed, said Tambi Pahmeier, a physical therapist at Southeast Alabama Medical Center where the group meets. She got involved because a friend of her parents had the illness.
“I thought this would be a way to honor her memory,” Pahmeier said.
Years ago, people diagnosed with ALS faced dim prospects, but some members of the local group have lived with the disease for years. Newcomers can benefit from their tips for overcoming obstacles.
“They have a good time visiting,” Pahmeier added. “They’re not just talking about ALS all the time.”
Of the many difficult aspects of this debilitating illness, the fact that it’s not as common as cancer or heart disease means there isn’t as much money for research, said Janet Wright, executive director of the ALS Association — Alabama Chapter. Like Pahmeier, she joined the cause after a friend’s husband was diagnosed and she saw what they went through.
It’s not unusual for ALS to be misdiagnosed or for it to take awhile to get a diagnosis, since doctors like to rule out everything else, Wright said. The goal of the ALS Association is to improve the quality of life — for both the patient and caregiver — whether it’s for a few months or 20 years. A patient coordinator can make home visits and serve as a valuable ally for getting assistive devices or home modifications to make life easier.
“You and I can’t even imagine what it’s like to have this disease,” Wright said.
Carole encourages others with ALS to participate in research to help others.
“There’s hope, and that’s what we live for,” Carole said.

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