Butlers hanging on in ALS battle

TREMONT - Al and Gloria Butler are in the throes of a heart-rending life.

Al's spirit, energy and ability to do things remain in amazingly good shape despite his continuing deterioration due to progressive neurodegenerative disease - amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease.

He gets outside, hangs out with friends when they go hunting, will watch the NASCAR race in Dover in June, gets on the boat with his grandsons, even drives to Boston by himself for specialized treatment.

"I feel OK," he said recently. "I'm afraid to stop."

He realized a "Lifelong Dream Come True" when the couple's close and dear friends, Linda and Michael Beattey of Seal Harbor and New Palestine, Ind., flew them out in January to Indianapolis, Ind., and took them to the Conseco Field House to meet basketball star Larry Bird and watch Mr. Bird's Indianapolis Pacers play against the Boston Celtics from front-row seats.

"I've been a Bird fan forever," said Al, who shows off a collection of memorabilia, including Bird photos and a basketball signed by his hero.

"We are very grateful and thankful to the Beatteys for this," Gloria said. "We will never forget this."

Al's lower body is still strong, but his upper body is weaker. He can still raise his arms to above his shoulders, but it takes a great deal of concentration and effort to do so. His hands have no grip at all, and his shoulders are losing their strength.

His speech has grown increasingly slurred but understanding him is not too difficult. The problem, he says, is the weakening of his tongue, which also makes it harder for him to eat.

He is able to drive alone to Boston, gripping the wheel up top by pressing down with his wrists or getting enough of a hold with his hands from the bottom.

In Boston, he has been receiving a specialized alternative treatment called "Body Integration" that has slowed his deterioration in the 4 1/2 years since he was diagnosed with ALS.

He makes the trip to Boston every three months for treatments that last three to five days, seven hours a day, at a cost of $200 per hour, which is not covered by his insurance.

Donations for these expenses may be made to the Al Butler Fund, Bar Harbor Banking and Trust, PO Box 698, Southwest Harbor 04679.

"I'm getting worse, but nowhere near where I thought I would be now," he says.

To deal with grabbing onto stuff, he early-on made a pair of hooks attached to leather straps that hang from his wrists.

But Gloria's help is becoming essential for some things.

"Thank God for Gloria," Al says.

Their morning schedule now includes extra time, before she goes to work, for her to help him dry off from the shower and button and tuck in his shirt.

"I can do it," he says, "but I'll be moaning and groaning and it takes forever."

He realized how much the winter's cold weather was stiffening him up when the couple went to Florida in February, and the warmth improved his energy and elasticity.

"Since we came home in March, I haven't had to rest in the afternoon except two or three times," he says.

The couple's grandson Joe has been a boon over the past few years, coming to town from Cape May, N.J., to help out his grandfather. This summer, both grandsons will be here. Joe will be 17 in June and Ryan 16 next October.

"So I'll get twice the mileage," Al jokes. "Joe was my hands all last summer."

Al and Joe went out on the boat a lot last year, cruising around and hauling traps. Al realized it had become too dangerous to go alone.

"I tried it one time and got a hook caught in a trap," he says. He found himself starting to get pulled over the side, but managed to haul the trap up and over.

"Both boys like to go out on the boat," he says. "Joseph loves it here. He's made a lot of good friends."

Hunting and cooking are pretty much out of the question. He'll still go to camp with his friends, but probably won't pick up a gun. Cooking is "a pain in the ass" trying to get packages open and use pots and pans.

He still does carpentry, but he has to have someone with him.

"I have the brains, but I don't have the hands," he says.

"It gets more and more stressful," says Gloria. "Luckily, I'm an optimistic person and we're still very optimistic about the whole thing. Who knows? A cure could come along in the next two years."

Al's energy and continued mobility are nothing short of a miracle, she says.

That's not to say life hasn't become more demanding, she says.

Although she's retained some measure of independence, it's becoming more clear that she will be increasingly tied to Al's care.

"Last Sunday," she says, "I was gone all day from 9 to 5:30, and he said how difficult it was to get any food together and to try to cook something. So I have to make sure that I get things ready before I go to work, something he can warm up in the microwave."

Mostly, she says, it's the little things he needs help with.

"It's still little compared with what it could have been at this point," she says. "He's still way ahead of the curve."

Both credit his well-being to kinetic muscle treatments he's been receiving from Woburn, Mass., chiropractor Dr. Rene Espy, combined with a food equivalent system called the Zone Diet, for improving vitality and well-being, and supplements intended to increase blood flow to affected areas and boost his immune system.

"The first year when he was diagnosed," she says, "every couple of weeks he was losing ground. Once he started with Dr. Espy, it slowed right down."

Al's condition provides life lessons that no couple should have to go through.

"I think at this point, we're there for each other," Gloria says. "I'd say it's made us more committed to each other at this point, but it took us a lot to get to that because of this."

There has been a long stretch when the couple lost sight of any kind of future and Gloria was unable to realize any sense of who she is.

"My life stopped," she says. "It's all about him, trying to figure this out. You totally put yourself aside. It's only been in the last year, when I said, OK, he's still here, he's still alive, now I've got to start taking care of myself again. Before he got sick, I definitely had an idea of us down the road. We were very active - four-wheelers, swimming, boating, going out, dancing, playing in the band, anything. Your life totally stops. But now that he's lasted this long, you can say, OK, he's still here, you can join the living world again."

Bar Harbor Times

Photo with Larry Bird