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Living with uncertainty

Thursday, May 3, 2007



By ANNE GLEASON
Staff Writer

For Michael Sloan, one of the most difficult aspects of living with Lou Gehrig's disease has been the uncertainty.
Last August, Sloan and his wife, Trudy, of Kennebunk, took a cross-country trip in Iceland. Sloan was able to get around using a cane. Last fall, he could take his dog, Oreo, out for short walks. Today, he uses a walker to get around and said the walks are no longer possible. In the near future, he anticipates having to rely fully on his wheelchair to get around.
"I don't see drastic changes on a day-to-day basis," Sloan said. "It does feel as though the changes are fairly significant over time."
The Sloans have already installed a wheelchair ramp in their garage. They are in the process of constructing an addition to their home to include a bedroom and full bathroom on the first floor, for when Sloan is no longer able to use the stairs.
Sloan was diagnosed with Lou Gehrig's -- medically known as amyotrophic lateral sclerosis -- in November 2005 and since then has done a great deal of research with his wife about the disease. The problem, however, is that no one knows a lot about ALS, which still is considered relatively uncommon.
ALS is a neuromuscular disease that kills off nerve cells in the spinal cord and brain that control voluntary muscles. Muscles that receive signals from the nerve cells weaken and eventually become non-functional.
This month, the Muscular Dystrophy Association is running a national awareness campaign on its Web site to bring attention to ALS. On Wednesday, Sloan was featured on the association's Web site as part of the national campaign. The intention of the campaign, said Kim Mancini, health care services coordinator for Maine's MDA branch, is to increase awareness about what people with ALS deal with each day.
Because there is little known about the cause of ALS and no cure for the disease, Mancini said it's important to make an effort to educate others, especially primary caregivers, including physicians, hospice workers and other health care professionals, about how to care for ALS patients. The campaign also is geared toward generating awareness among the general public.
Mancini nominated Sloan to be part of the campaign. He later was one of 31 people selected by the national organization. The Sloans both frequently share information they've discovered about ALS during the Muscular Dystrophy Association support groups held in Portland, Mancini said.
"I think of him as one of the leaders in the support groups I go to," she said. "It's of value to people to go to support groups and hear that. A lot of people learn from each other how to deal with their disease."
Sloan, who is a doctor himself, hopes experts eventually will understand the causes of ALS and discover possible cures. Currently, only one approved treatment is available for ALS patients. In studies, Rilutek has been shown to prolong the life of an individual with ALS by an average three months.
On average, individuals with ALS live between two and five years after being diagnosed. The cause of death is usually respiratory failure.
Trudy Sloan said the disease's unknowns make it difficult "to figure out how to change your life to prepare." The disease also manifests differently in different people. For some, speech is impacted first. For others, including Sloan, fingers, legs and hands are first impacted.
Sloan said the support group and his circle of support set up through the eHope program have helped him manage the disease despite the uncertainty. EHope, based in Portland, helps set up Web-based caregiver communities for people diagnosed with terminal illnesses.
"The hard part right now is just now knowing the cause," he said. "To be able to look ahead and predict anything -- where I will be in six months or a year -- that's very difficult."
Staff Writer Anne Gleason can be contacted at 282-8229 or at:
agleason@pressherald.com