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Walkers rally support to 'd'Feet' debilitating disease

October 08, 2006|by ALICIA NOTARIANNI

Both the pain and the strength were palpable as people who have amyotrophic lateral sclerosis gathered Saturday morning with family and friends for the Walk to d'Feet ALS at Fairgrounds Park.

Robin Stahley, 46, of Hagerstown, was diagnosed with ALS in 2002. Stahley said she has lost a lot to the neurological disease, including a 20-year career as a safety director in health care. Today, Stahley, who has a husband and a 15-year-old son, uses leg braces and a feeding tube. She is able to get around some with the aid of a cane, but also uses a wheelchair.

Stahley said each day living with ALS - aka Lou Gehrig's disease - is a little harder than the one before.

"Sometimes, I can't do anything and I feel stupid. I go to lift up a glass, and I drop it and break it," Stahley said through tears. "It's a tough disease. I'm fighting just to stay here. I don't want to give up."

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Stahley, along with her family and friends, set a goal to raise $250 for the Walk to d'Feet ALS. They arrived at Saturday's event with more than $1,100 in donations.

"I hope that through all this, something will happen," Stahley said.

Christine Kirkley, senior development associate of the Rockville, Md.-based ALS Association DC/MD/VA Chapter, said that in patients with ALS, the connection between nerves and muscles is disrupted, causing the muscles to atrophy. Typically, patients die within two to five years of diagnosis when their breathing becomes affected, Kirkley said.

"It's particularly devastating because the mind remains alert and knows what's happening the entire time," she said.

Kirkley said she knows people as young as 21 and others well into their 70s who have the disease.

"One reason for the walk is to get people together to know they are not alone in this," Kirkley said. "It can be a very lonely disease, so we like people to meet others who say, 'I've been through what you are going through,' and develop a support system."

About 150 people from Pennsylvania, Virginia, West Virginia and Maryland attended the walk despite the damp, cool weather. Kirkley said she anticipated proceeds from the event would total around $10,000.

Sisters Debi Peeks, 55, and Kim Ambush, 49, both of Frederick, Md., said a rare familial type of ALS runs in their family. They have lost their mother, father, brother, an aunt and an uncle to the disease. The sisters and about 15 relatives gathered for Saturday's walk.

The sisters said in addition to participating in ALS Association events, their family participates in an ALS research study at Johns Hopkins University, gives blood, attends seminars and has even donated the bodies of loved ones for research.

"This is extremely important to us," Ambush said. "This disease just hits you out of the blue. It can start with a twitch, then you just watch someone's body deteriorate. It's terrible."

The ALS Association named Edye Dandy the "family chair" - or guest of honor - for the walk. Dandy, 45, of Cascade, was diagnosed with ALS in 1997. Family and friends who accompanied her to the walk dubbed themselves "Edye's Feeties," and raised about $3,400.

"Every year, (the Walk to d'Feet ALS) gets bigger and brings more awareness and that's great," Dandy said. "We're living with the disease every hour, but we always have hope, and we never give up."

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