Ride For Life: Newfound support for ALS

Three years ago, Tim Burke found out he had Amyotrophic lateral sclerosis (ALS), also called Lou Gehrig's disease.

"You can't have it," said Noreen Burke, his younger sister. "There's no cure."
She was right. There is no cure for the disease that attacks nerves and pathways in the brain and spinal cord, paralyzing its victims and, typically, killing them within two to five years.

But Burke, of Hamburg, does have it, and became one of the 15 people who are diagnosed daily in this country.

At first, his sister, who lives in San Diego, Calif., spent hours on the Internet soaking up information, then she called the nearest ALS chapter, which was in Orange County, Calif., determined to help. "I'll sweep floors," she offered.

Because Burke and his wife spend their winters in San Diego with his sister, she decided to organize a chapter in San Diego. In the last 18 months that group has grown to 400 members and raised $120,000 at its Walk to D'Feet ALS.

But that wasn't enough for Noreen Burke. She wanted to be sure that her brother and others in Western New York had the same services. Currently the nearest chapters are in New York City, Pittsburgh and Cleveland.

So, from thousands of miles away, she started planning the formation of a chapter that would serve this area, initially from Buffalo to Syracuse.

"I had my eye on Buffalo the whole time," said Burke.

There obviously is a need, underscored by the fact that at a meeting in October, people came from as far as Syracuse. Also, the national association, based in Calabas, Calif., has received 1,500 inquiries about it.

There will be an organizational meeting at 7 p.m. Thursday in the Sheraton Four Points, 2040 Walden Ave., for anyone who is interested. Representatives from the national group -- Dee Dee Lowland, vice president for community services, and Kathleen McCartney, director of chapter services -- will lead the meeting.

The group plans its first fund-raising event for June, in collaboration with the Buffalo Bisons, to celebrate the 100th anniversary of Lou Gehrig's birth. In October, it will sponsor a Walk to D'Feet ALS as part of a national effort.

Noreen Burke knows that she can't change her brother's outcome. He now needs help with "everything," she says of the once vital 60-year-old former Ford Motor Co. human resources employee.

"Fortunately, he can still talk and breathe on his own," said Burke, "but he couldn't be left alone."

It's a bitter contrast to her memories of a sociable guy.

"He was the first one to get us out for walks," she said. "Now, he goes only as far as his electric wheelchair will take him."

Burke's plans meshed with those of Donna Mott-Lange of Auburn, whose father's illness took a toll on everyone as he went through myriad tests and misdiagnoses.

"It was a mess, arguing with insurance companies, not knowing where to go," said Mott-Lange, who is acting executive director of the fledgling Upstate New York Chapter of ALS.

Brian Brady, who is also involved in the effort to get a chapter started, said he would have welcomed such resources while his wife, Marion, was dying of the disease.

Though Brady was all too aware of ALS (his sister-in-law died of it weeks before his wife did), he would have appreciated being able to pick up a phone when they faced the many unknowns.

In his wife's case, the first sign of ALS was that her hands became tired and weak after she pruned vines, leading them to suspect that she had carpal tunnel syndrome. Eventually, a neurologist ruled out other possibilities, leaving them with the ALS diagnosis.

Brady said that if there had been a chapter to consult, "I would have gone to them immediately. The lack of knowledge was a lot more than annoying."

For example, when his wife developed an agonizing headache, a first for her, Brady told the emergency room doctor about the ALS, thinking there might be a connection. Though she was treated and came home feeling better, Brady said that the medical personnel didn't give any indication that it was related.

But his sister-in-law, "got on the Internet and in 20 minutes found that it was a carbon dioxide buildup," said Brady. "Without the Internet, we would have been in darkness."

Because the disease acts relatively quickly and the needs are so all-consuming, Brady said that talking to someone who understood would have been a comfort.

"You get all your energy zapped by the immediate concerns," said Brady. "It all falls on family and friends."

Typically, a chapter sets up a phone line and then forms support groups, which offer families a chance to trade information, as well as bringing in medical and insurance experts. Burke's group also operates a loan closet that supplies communication devices and electric wheelchairs; a van service, and a library.

McCartney, who works with the 38 local chapters, said the organization's dual goal is to find a cure, while helping those who have the disease.

She, too, knows about it first-hand, watching her father die when he was 74.

"It's just very difficult to watch someone you love lose control," said McCartney. "You can't shower, go to the bathroom, feed yourself. It's inch by inch, day by day."

Though there isn't a way to beat the disease yet, those starting the chapter want others to know that there are people who continue to fight it.