Dunedin man walks for Lou Gehrig's disease cure

By Tamara El-Khoury, Times Staff Writer
Published Thursday, April 10, 2008 8:00 PM

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[JIM DAMASKE | Times] Bill Motley, who has Lou Gehrig’s disease, takes his dog, Tessie, out for a walk while his wife, Camille, sees him off.

DUNEDIN — Bill Motley served in the U.S. Army during the Vietnam War and later sweated his way through 16 marathons.

Today, he considers himself lucky to be able to walk and talk. After all, many of those diagnosed with his disease can't.

There will be a time when amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease will take away those abilities. Until then, he's using his voice to spread awareness of ALS and his feet to raise money for research.

Saturday, he and his supporters — dubbed the "Motley Crew" — will walk 3.1 miles at Bright House Field in Clearwater in the ALS Association's annual fundraiser. Hundreds will participate at 2:30 p.m. in the Walk to Defeat ALS, which raises money for research and patient care.

Last year, 477 people raised about $100,000. The goal this year is for 600 participants to raise $185,000, said Kamden Alexander, spokeswoman for the ALS Association's Florida Chapter.

There is no cure for ALS, a progressive neurodegenerative disease that paralyzes those who have it. Although their minds stay sharp, those with ALS progressively lose their ability to walk, talk, use their arms and eventually the ability to breathe. The disease is considered rare and is found in about two per 100,000 people in the general population.

Motley, 59, a Dunedin resident, worked as a police communications officer for the city for more than 20 years. After the Pinellas County Sheriff's Office took over, he worked in the code enforcement department for Dunedin and then Tarpon Springs.

He and his wife of 32 years, Camille Motley, have six adult children.

Motley began developing symptoms in 2003 when he started dropping his head and couldn't hold his right arm up when running. His left arm was already paralyzed from a motorcycle accident in 1970. Like all patients who are diagnosed with ALS, he was given two to five years to live. But Motley's progression has been slow.

"(God's) keeping me around for a reason," Motley said.

His marathon days are over. He can't lift a glass or button a shirt, but Motley is still active. His running buddies threw him a surprise party and bought him a racing three-wheeler. He serves on Dunedin's ADA Committee and Environmental Quality Committee. He's part of an ALS support group.

"I'm not going to be idle," he said. "I'm going to do as much as I can to make this disease known because it's so rare."

He thinks his military service made him more prone to developing ALS and encourages other vets with the disease to file a claim with their local Veterans Administration officer.

Although many questions remain about the cause of ALS, studies have shown that those who served in the military are nearly twice as likely to have ALS than those who didn't serve, according to the ALS Association.

Motley hasn't lost his competitive spirit. He and another ALS patient are in a challenge to sign up 100 people to their teams.

"You've got to have your faith, you've got to stay involved in the community," Motley said. "Focused, focused, focused, focused. Just like running a marathon."

He wants people to say he ran a good race.

Tamara El-Khoury can be reached at tel-khoury@sptimes.com or (727) 445-4181.