Ride For Life: ALS plagues family since 1825

The Journal-Standard Freeport, Illinois By Kara S. Anderson, The Journal-Standard September 23, 2002

FREEPORT - Growing up with a mother afflicted with amyotrophic lateral sclerosis, or Lou Gehrig's disease, is bound to have an effect on a young man's outlook on life.

Certainly that was the case for Freeport resident LeRoy Hunter, who reflects on those memories in his home office, in front of his walker that he has used for the last two years.

Hunter, who was diagnosed with ALS in 1995, will be appearing on the Rockford edition of the Jerry Lewis Labor Day Muscular Dystrophy Association Telethon, which began Sunday night and runs through Labor Day.

During his taped segment, Hunter talked about his battle with ALS and how the disease has affected his family over the years.

ALS, a disorder that causes a progressive loss of voluntary muscles because of the destruction of nerve cells in the spinal cord and the brain, shows a family history about 10 percent of the time. He said that during childhood some of the simplest things his classmates laughed at weren't amusing to him.

"I grew up with my mom not being able to walk," Hunter said, adding that in his family, someone falling down was a serious concern. "It wasn't weird to me. I kind of looked at things differently. When kids fell down in a room, I didn't think it was funny."

Hunter, who watched his sister, Maud, suffer with ALS until she passed away in the late '80s, said his family originally came to Freeport at the turn of the century. His parents met in the '30s and then moved to California. LeRoy was born there in 1955.

His mother, Evelyn, died in 1967 of ALS, after which his father moved back to Freeport. Hunter served the Marine Corp for four years in the early '70s as a military policeman. After working jobs in the security field in such places as Baltimore and Washington, D.C., he ended up working as an area manager at Kelly-Springfield.

Hunter said ALS has been in his family for many years. He traced it back to 1825 to a Swedish woman who married his great-great grandfather before eventually succumbing to the disease.

Growing up, Hunter said he never thought he would get ALS.

"In the '60s, ALS was known as a European Disease, so as an African-American, I didn't think I had too much of a chance," Hunter said.

But in 1995, after chipping a bone in his foot, he began to notice he knees were gradually getting weaker.

Doctors sent Hunter to the Mayo Clinic where they confirmed that LeRoy had ALS in April 1995.

"It was more like a relief," he said with a smile. "They had me convinced I was nuts. They gave me 2 to 5 years (to live). That was 7 years ago. I ain't doing bad at all."

Hunter also said he has become aware that his four children, Katrina, 30; Evelyn Nicole, 28; Robert, 23, and Ronald, 21, have a 50 percent chance of getting the disorder.

When he learned of that risk, doctors at the Mayo clinic handed him a very large packet, which among other things, recommended that he sign up with MDA.

The Muscular Dystrophy Association was created in 1950 by a group of adults with muscular dystrophy and a physician-scientist who was studying the disorder. The most notable contributor to the organization is comedian Jerry Lewis, who also serves as national chairman for the organization.

In addition to dealing with muscular dystrophy diseases, MDA also is concerned with other areas such as inflammatory myopathies, diseases of the neuromuscular junction, and motor neuron diseases which include ALS.

Hunter said he spends his days working on his hobby of desktop publishing and hanging out with what he calls "the Rat Pack," a group of four local men with ALS who befriended each other and sometimes go out for breakfast. Every three months he sees doctors at the University of Wisconsin, who, he said, have been tracking the progress of the disorder.

Even in his current circumstances, Hunter maintains an attitude of acceptance.

"You're going to die of something," he said, adding that while in the Marine Corp he saw people who died without the ability to get things in order. "They never got their stuff in order before they checked out."

Hunter's daughter, Katrina Barrow, said the illness of her family members inspired her to become a registered nurse. She also said she felt blessed to assist her father and his positive attitude has proven to be inspirational.

"That's the key to any illness," she said. "You can say, 'Oh God, I'm sick,' or you can say, 'This is what's happening, we're going to deal with this.'"

Barrow said that while working at Freeport Memorial Hospital, three members of her family who were stricken with ALS were in her wing of the hospital and she helped take care of them. Two of them have passed away.

Freeport firefighters also got into the act of fund-raising for MDA when Freeport Firefighters Local 441 participated in the annual "Fill the Boot" Saturday in front of Wal-Mart and Cub Foods.

The "Fill the Boot" campaign is a national fund-raiser that entails the fire fighters to ask area residents to donate spare change or dollar bills into a firefighter's boot. The money raised will stay in the local communities and helps provide wheelchairs, leg braces, clinic visits, support groups, flu shots and a weeklong summer camp for children ages 6 to 21.