By RAY WEISS
The Daytona Beach News-Journal
Staff Writer
© 2003 News-Journal Corporation
Last update: 22 June 2003

ORMOND BEACH -- Laughter fills the conference room. It is not the sound someone expects to hear from a group of dying men and women.

Over in a corner, Tom Davis is razzing Bill Swan, a former Canadian Football League player for the Montreal Alouettes, about a photograph taken of him in uniform 40 years ago.

They cut up like teenagers.

"These two had to know each other in another life," says Swan's wife of 41 years, Toni. "You can see they really love each other."

But until last year, they were strangers.

A terminal illness, amyotrophic lateral sclerosis or Lou Gehrig's disease, and a local support group, brought them together.

While Davis, 71, a retired math professor, and Swan, 63, talk about getting together someday for lunch or dinner, they never have --and maybe never will. Like soldiers in combat, they find it difficult to commit to a friendship that is destined to end in heartbreak.

But once a month, the men see each other at the meeting. The good-natured teasing helps them emotionally recharge for the difficult days ahead.

Davis, diagnosed with the disease 13 months ago, informs the group about "the greatest invention of all time" that he discovered on the Internet. The bidet allows Davis the opportunity to maintain his dignity, now that his hands are stiff and weak.

"It cleans and dries," he says.

"And it feels good, too," Swan adds, igniting a roomful of laughs.

But moments later, Davis' smiles turn to sighs as he falls back into a chair. He struggles to catch his breath.

"It's getting worse," he says of his health, his part-time assistant nurse seated behind him.

His body is shutting down. The muscles that control his speech and swallowing are weakening. And after a brief stay in the hospital, he is being treated for blood clots in his legs and lungs.

"I get so tired. I can't walk up the stairs anymore to our bedroom," he says. "I fell last week. I was out on the grass, flat on my face. I couldn't get up. I had no strength."

His wife Kathy, who is blind, tried without success to lift her husband. Finally, a neighbor saw them struggling and rushed over to help.

"That was the first time I felt, so embarrassed," he tells the group.

But somehow, Davis musters the strength to show up every month for the meetings at Ormond-in-the-Pines, a nursing and assisted-living facility.

"It gives me a chance to interact, and help other people face what we all face together," Davis says. "We need each other."

There are no happy endings with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease.

Betty Jo Babic, the group's facilitator, breaks the news that one of the regulars with the disease, as well as the mother-in-law of another member, died during the previous month.

Nine have died since Babic helped start the support group in September 2001, following the death of a close friend to the disease.

Until then, the closest support group was in Ocala.

"Some of them have been with me since the beginning," she says. "It's always so hard when we lose someone. But it's not all gloom and doom."

One-by-one family members, friends and those fighting the disease introduce themselves. They discuss everything from medications to mortality.

Maria Falkenhagen of Palm Coast, whose husband recently died from the disease, talks about the emptiness she feels.

"There's no way to describe what it's like when you've lost your best friend," she says. "I just try to keep going forward. I try to exhaust myself during the day so I can collapse at night. Or I can't sleep."

But Falkenhagen also looks to the future. After a year's leave of absence, the special education teacher is returning to work in August.

"I'm looking forward to it so much," she says of being with the first-graders again. "I think I need the schoolkids more than they need me."

But she still needs the people in the group, and she knows they need her.

"If I can help any of you here, if there's anything I can do, I'm strong," she says with a smile, flexing her arm.

Besides candor, fear and desperation is expressed.

One man who has survived eight heart attacks can no longer help his wife bathe or get into bed.

He is frustrated and scared.

"I'm not supposed to lift more than 5 pounds. I know I'm not going to make it. It's almost got me," he laments. "But I don't know where to turn. It's like a game, a deadly game we're playing."

Falkenhagen and several others offer advice, informing him of agencies that might help.

He is not alone. Everyone in the group can empathize.

"Sometimes we laugh and sometimes we cry," says Babic, who recently received an award from the United Way for her volunteer work with the group. "I think it helps them cope with what they have ahead of them. They get strength from each other."

Everyone in the room knows that death from the disease often occurs within a year or two after diagnosis. It ultimately shuts down the body, while the mind usually remains sharp and fully functional.

Some mask the despair with humor.

"I have a suggestion that we turn the group into a dance club," joked 80-year-old Ed Pierpoint of Ormond Beach. "I had a great month. I only fell twice, not four times."

"Ed, you're catching up," Swan counters, his baritone voice booming across the room.

When it's Swan's turn, he talks about his mental outlook in dealing with his terminal disease.

"I'm content with the condition I'm in. I don't waste time on the fear," he says. "I don't care if it rains tomorrow. I don't sweat the small stuff anymore."

During the month, he fought a cold for three weeks, swam every day in the pool and even hit some golf balls.

"I'm hitting them about 175 yards," Swan boasts about his tee shots from a special chair.

Davis can't let the comment slide, firing a zinger back to his support-group buddy.

"And that's about 25 yards farther than you ever hit them before."

ALS Support, a support group for sufferers, families and friends affected by amyotrophic lateral sclerosis meets at 1 p.m. on the second Wednesday of every month at Ormond In The Pines. The senior-living facility is at 101 Clyde Morris Blvd., Ormond Beach. Call (386) 673-1252.