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Event hits close to home for ALS patient

August 21, 2005|By BONNIE H. BRECHBILL

bonnieb@herald-mail.com

MERCERSBURG, Pa.

Mary Jo Shipe did lots of dancing and hugging Saturday evening.

About 250 friends and family members crowded into the covered walkway at Whitetail Mountain Resort to eat, drink, dance, enjoy children's activities, and purchase raffle tickets and auction items.

The exuberant celebration obviously was in Shipe's honor; nearly everyone in attendance either danced with the Mercersburg resident or hugged her.

Yet she did not eat or speak the entire time.

Although the event appeared more like a family reunion, it actually was a fundraiser for amyotrophic lateral sclerosis (ALS).

According to a paper by Anne D. Walling, M.D., of the University of Kansas School of Medicine, "ALS is a progressive neuromuscular condition characterized by weakness, muscle wasting and increased reflexes. Approximately 30,000 Americans currently have the disease. It is most commonly diagnosed in middle age and affects more men than women. It usually presents with problems in dexterity or gait resulting from muscle weakness. Difficulty in speaking or swallowing is the initial symptom in the bulbar form of the disease.

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"ALS was first described in 1869, and is commonly referred to as 'Lou Gehrig's disease' in memory of the baseball player who died of ALS in 1941."

Shipe has the bulbar form of ALS. She started experiencing slurred speech in January 2004, and was diagnosed with ALS in October 2004. Unable to eat or speak, she takes nutrition through a feeding tube and communicates with a marker and erasable white board.

Neither of which slows her down - she drives, dances, sews and enjoys life.

"I feel blessed," she wrote. "I have a wonderful husband and four children who helped with this, and eight beautiful grandchildren." Daughter Caroline Miller of Mercersburg coordinated the event.

Shipe patiently explained her condition in legible, even handwriting.

"The muscles in the tongue are gone," she wrote. "You need your tongue to move food around."

As the ALS progresses, "It may move to my lungs before it goes to the limbs. Most people get it in their limbs first."

After putting down her board to dance with two young balloon-festooned boys passing by, Shipe added, "The disease is not well-known. More than 60 percent of money raised is raised by the families of ALS patients. People don't live long with it, although some live 10 years. There is no cure or help."

Shipe made the quilts for the raffle.

Money raised from the event will benefit ALS research.

Family members came from far and near to support the cause. Son Andy came from Washington, D.C.; her sister, Kathleen Dugan, from California; and niece Kristin Dugan came from Rome with her friend, Marco Lori.

"I can't keep up with her," Kathleen Dugan said. "We e-mail a lot. Her spirits are always so good."

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