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Still in the race
18 years after learning he has Lou Gehrig's disease, a Bexley man keeps counting his blessings
Monday, August 27, 2007 5:41 AM
By Misti Crane

THE COLUMBUS DISPATCH

CHRIS RUSSELL | DISPATCH PHOTOS
Marc Levison is reflected in the glass window of Flavors Eatery on Main Street in Bexley. The restaurant is displaying the names of contributors to ALS research through Sunday's Marc Levison 5K race.


CHRIS RUSSELL | DISPATCH PHOTOS
Marc Levison crosses Main Street in Bexley on his way home from Starbucks. He will participate in the 5K race that bears his name on Sunday.
Human bodies ravaged by incurable illness sometimes ignore the prognosis and endure.



In the best cases, that means years longer in this world: babies cradled, secrets confided, dreams realized.

The disease attacking Marc Levison's nervous system usually gives people three to five years.

Since his first symptoms appeared, he has celebrated 18 birthdays; most recently, his 60th. Brent and Kevin, his sons, have grown into men.

He has been before the Food and Drug Administration to fight for approval of a drug to treat amyotrophic lateral sclerosis, more commonly known as ALS or Lou Gehrig's disease.

He has raised almost $100,000 to pay for researchers seeking a cure.

In Bexley, he has become a familiar face -- a gadabout, his wife, Eileen, would say. He frequents the Starbucks on Main Street; the library; the Wexner Heritage House; and Sunrise Senior Living, where he spent about a year while Eileen was hospitalized with pulmonary lymphoma.

He wheels around his office -- his dog, Toby, in his lap -- and arduously types messages, "Marc's Thoughts for Today," that he sends to friends, family members and supporters.

"Sure I am only a small wave as in water, but if everyone tries, you can overcome anything," he wrote this month.

On Sunday, he will complete the fifth 5K in his honor. He will ride his motorized wheelchair and expects to finish in about 28 minutes, a minute slower than he once was able to run.

He loves seeing signs around town promoting the race, the paper baseballs in the window of Flavors Eatery, signifying how much money has been donated to research.

Each year, at the starting line, "I think about everyone who gave up their time to help me out," he said recently, his eyes welling with tears.

"How can one person make a difference in so many lives? That is unreal," he said, slowly spelling the last few words to make them more easily understood.

Finding a cure for ALS has become Levison's life work. He used to be an electrician, work he said he would do now free if his body would let him.

Nobody is sure why he has had so much time.

Jerry Mendell, a neurologist at Children's Hospital who is Levison's longtime doctor, said science explains some of it.

The disease first affected Levison's upper motor neurons, nerve cells that start in the brain and run through the spinal cord.

Usually, ALS first attacks the lower motor neurons, nerve cells that start in the spinal cord or brain stem and end at the muscle fibers. Malfunctioning lower motor neurons lead to respiratory problems, which signal the end for most people who have ALS.

"He's a man on a mission and it keeps him going every day," Mendell said of Levison. "I hope he completes his mission."

Perhaps the most well-known longtime survivor of ALS is scientist Stephen Hawking, who is now 65 and was diagnosed at 21.

There is no known cause or cure for ALS and only one federally approved medicine to treat the symptoms.

"I've never known anyone who has gone through a disease progression like (Levison) has," said Marlin Seymour, executive director of the ALS Association's Central and Southern Ohio chapter. Seymour's mother died of ALS in 1995, a year after her diagnosis.

At first, Levison and his wife went on with life as normal after doctors identified his ALS.

"Marc was still so busy and involved and active, it wasn't something that we sat around thinking about," Eileen said.

Then came a cane, a walker, a wheelchair. His speech began to seriously deteriorate about four years ago.

"It started to get really scary," said the Levison's older son, Brent, who is 36 and lives in Florida.

He marvels at his father's drive. Every day that he can, Marc makes his rounds in town. Despite deteriorated muscles in his arms and hands, he sends e-mails, even if it takes half a day, Brent said.

He said his mother is just as amazing. Eileen has struggled with cancer for years but remains Marc's primary caregiver. She is 5 feet 3 inches tall and rail thin but regularly helps her 6-foot-4 husband into and out of the bed they've had in the living room for years.

Debbie Shell, a friend of Brent's who started the race, called Levison an inspiration.

Her favorite quote is from him: "Find a cause you'd die for, and live for it."

Carole Montgomery, a nurse and family friend, said Levison is in pain every moment but hardly complains.

"A fly is on your face, you can't get it off. You only eat when someone will feed you," she said.

Levison handles the obstacles with grace, she said, and humor. And he never loses sight of his hope that there will one day be a cure, she said.

When considering what might have set Levison apart, giving him so many more years than so many other people, Montgomery paused for a moment.

"Marc will tell you it's because God sent him a message that he has work to do, and if Marc believes that, I believe that."

To sign up for the Marc Levison 5K on Sept. 2, go to www.premierraces.com, or register up to an hour before the 8:30 a.m. race time at Bexley's Jeffrey Mansion, 165 N. Parkview Ave. Registration is $20 in advance, $25 on race day.

For more information on ALS, go to www.alsohio.org.

mcrane@dispatch.com
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