In search of a cure
Scott and Molly Poole know firsthand about Lou Gehrig’s disease. It’s the reason they will ‘Raise the Roof for ALS Research’ next month.

By JUDY A. STRAUSBAUGH, Business/Political writer
Sunday News

Published: Jun 24, 2007 12:09 AM EST

LANCASTER COUNTY, Pa - Married a little more than a year, Scott and Molly Poole didn't think they'd return so soon to their wedding-guest list.

But the Lancaster couple used that and other lists to glean names of people to invite to an event that might be even more important than their May wedding.

The Pooles plan to throw a big bash to raise money for, and awareness of, amyotrophic lateral sclerosis or ALS. The July 7 fundraiser at Landis Valley Museum was Molly Poole's idea.

It came to her in early February, soon after her husband was diagnosed with the neuro-degenerative disease.

Married just three months, Molly, 44, became alarmed last summer when she saw the muscles in Scott's upper right arm twitch uncontrollably. Molly recognized the symptoms because a family member had died from the disease.

"The twitching was progressive," said Scott, 43.

So is the disease.

Loss of control
ALS is also called Lou Gehrig's disease after the pro-baseball player who was diagnosed with it in 1939. It causes muscle weakness and paralysis by attacking the body's motor neurons. It affects different people in different ways. Some lose the ability to speak and others lose muscle control. To date, it has always been fatal.

By December, Scott could not raise his right arm. Today, his left arm has a limited range of motion.

Scott continues to work as an attorney for Fulton Financial Corp. Nearby, Molly is an administrative assistant for Zimmerman Pfannebecker Nuffort & Albert.

His speech is a little slurred and he needs help getting dressed and feeding himself, but Scott's goal is to stay active as long as he can. When he's not working, Scott sees specialists at Hershey Medical Center. He receives physical therapy and benefits from alternative treatments such as acupuncture.

Before he was slowed by ALS, Scott said, he enjoyed backpacking and gardening. He also prided himself on being a do-it-yourselfer with home-improvement projects.

Today, however, he's too impaired to do anything the way he used to, he said. "I can't even turn a page of a book the normal way."

Losing control and the ability to contribute is difficult for ALS patients.

Gordon E. Miller, 55, of Gap was diagnosed with the disease in April 2006.

He uses a power wheelchair to get around. "It gives me a little bit of independence." Formerly a maintenance manager at Auntie Anne's Pretzels in Gap, he keeps a part-time job driving Amish folks to work several days a week.

He has been married to Emy for 35 years. They have two grown sons.

"My illness certainly has changed how we do things and where we go," Gordon said. "It has changed the dynamics of our family life."

He said the diagnosis was a shock to him and his family. "I got angry, but then I came to terms and decided to make the best of whatever time I have left," he said. "I have to stay positive and work through it."

Hope for the future
Like Scott Poole, Gordon seeks treatment at Hershey Medical Center where he participates in drug trials, research experiments and nutritional studies.

The two men met met through the Hershey treatment program, which has a number of medical and therapeutic specialists as well as pastoral counselors and social workers.

Gordon doesn't know if he can make it to the Pooles' fundraiser, but he is pleased to know the net proceeds will go toward research. "Most people don't know what ALS is," he said.

"ALS is grossly under-funded in the area of research," said Molly Poole. But research has advanced in recent years, and some ALS patients are breaking the six-year mortality barrier, she said. "Soon, we can expect ALS patients to live 12 to 15 years," she said, hopefully.

"There is some evidence that people with ALS are living longer," states the ALS Association Web site.

More than 5,600 people a year, or an average of 15 people a day, are diagnosed with ALS, according to the Greater Philadelphia Chapter of the ALS Association.

Most people develop the disease between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. The diagnosis rate is picking up, however, as more military veterans of Desert Storm are becoming inflicted.

"More work is needed to conclusively determine what genetics and/or environment factors contribute to developing ALS," says the ALS Association.

The Pooles are eager to participate in any activity that will benefit those with ALS. "So many people are affected by ALS," Molly said. "Everybody and anybody can help make a difference."

Scott said his wife is an optimist. And she agreed. "We are so close to finding a cure; I know we are," she said.

The Pooles want more time to experience their marriage, a pleasant development that neither expected to happen when they first met on a blind date in September 2005. After a second date, Molly said she heard this little voice say, "He is the one."

About the benefit
"Raise the Roof for ALS Research" fundraising dance will be held at 6 p.m. July 7 at Landis Valley Museum, 2451 Kissel Hill Road.

Music will be provided by the Bob Troxell Big Big Jazz Band and disc jockey Lenny & the Groove Machine.

A silent auction will include a mink coat, jewelry, Orioles and Phillies tickets "with great seats," works by local artists, overnight stays at local resorts and dining gift certificates.

Food will be upscale picnic fare.

Event sponsors are Murray Risk Management and Insurance, Rodgers & Associates and Fulton Financial Corp.

Tickets are $50 per person in advance and $60 at the door. To buy tickets, make a donation or for more information, contact Lisa Murray at Lislrm@aol.com.



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Judy A. Strausbaugh is a political writer for the Sunday News. She can be reached at 291-8689 or jstrausbaugh@lnpnews.com.