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Beating the odds and making music

ALS victim and local teen pianist hook up to help each other

ALS victim and local teen pianist hook up to help each other

December 28, 2006|by MARLO BARNHART

HAGERSTOWN - Paul Gould's appreciation for classical music was plain to see on his face as he listened to his friend, Leah Claiborne, play the piano for his enjoyment a few days before Christmas.

"I so look forward to her visits and her music," Gould said. "I was a piano player myself until five years ago."

A former chief financial officer for Frick Co. in Waynesboro, Pa., Gould has been a resident at Western Maryland Hospital Center in Hagerstown for the past two years.

Gould, 67, has amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. Confined to a wheelchair, Gould wears a head brace, is dependent on a ventilator and rapidly is losing the dexterity in his hands and fingers.

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There is no cure for ALS.

"In 1998, I was jogging when my knee gave out," Gould said. He attributed that to an earlier tennis accident and moved on with his busy life.

But then every few weeks, something else would happen, so Gould finally went to a doctor, beginning a long quest to put a name on whatever was working on him.

"At Johns Hopkins, I was told I had ALS," Gould said. "They gave me one year to live ... in 1998."

Gould, who continues to beat that dire prognosis, said he still was able to walk in 2002.

Shortly after coming to Western Maryland Hospital Center, Gould met Leah, then 14 and already a piano prodigy. Leah's mother, Angie Claiborne, is director of integrated patient-care services.

"I was getting ready for a national competition then," said Leah, now 16 and a junior at Tuscarora High School in Frederick, Md.

When Leah's mother told her about Gould's situation and his love for classical music, the two got together and have been visiting regularly ever since.

"I would practice my programs here, and Paul would come to listen," Leah said.

Busy with school and other activities now, Leah said she doesn't get to visit Gould as often as she would like. A lot of her time is spent looking for the right conservatory to continue her education after next year.

That's where Gould has offered to help his young friend.

"I have a cousin who is director of the San Francisco Symphony Orchestra and known worldwide," Gould said. "I want him to recommend Leah to Juilliard in New York City."

N. Linn Hendershot, director of communications at Western Maryland Hospital Center, said Leah and Gould truly have bonded. When they visit, residents and staff gravitate to the music room to listen.

"Paul is so realistic about his disease," Hendershot said. "He knows he will soon lose touch on his laptop computer, so he's learning nose control."

That involves a device that allows the user to turn his head and point a light at the keyboard to activate a key, Hendershot said.

"I have a great family," Gould said. His wife, Judy, lives nearby, but his children are scattered in California, New York, Florida and Colorado.

On a recent journey outside the hospital, Gould purchased Web cams for every member of his family and for himself. Now, they will be able to see and talk to each other in real time.

Despite his illness, Gould said he finds great joys in life, including his visits with Leah and listening to her music.

"You make the choice to live or to die," Gould said. "I chose to live."

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