Article published May 23, 2005

EXETER — Right when Ted Dyer turned 45 in October of 2003, he noticed things weren't right.

An experienced rider, he was straddling his '94 Harley Davidson Heritage Softail motorcycle, walking it into the shed for the winter, and fell.

The next year and many medical tests later, including a spinal tap, he was diagnosed with amyotrophic lateral sclerosis (ALS). Also called "Lou Gehrig's disease," it affects nerve cells in the brain and the spinal cord, gradually taking away people's ability to move, walk, talk and breath.

Dyer's fall and, after that, noticing his legs wouldn't go where he wanted, is similar to the symptoms first experienced by many of those later diagnosed with the disease.

They are typically healthy people between the ages of 40 and 60 who notice weakness in their hands or feet, having trouble gripping items such as a phone, or find themselves tripping on the carpet, said Scott Edelstein, a public relations employee of the ALS Massachusetts Chapter.

Edelstein went to work for the chapter after his mother was diagnosed with the disease. Like the vast majority of ALS patients, her mind remains intact. Now in the final stages of the disease, she has all but lost the ability to communicate. She can no longer move, point to letters in the alphabet to spell out words, or nod, he said.

"Most people with ALS had never heard of the disease and are completely shocked to learn they have something so cruel and devastating," he said in a phone interview.

Dr. Richard Levy, a neurologist at Exeter Hospital, said in an interview in Exeter that getting diagnosed with any of the neurological diseases such as MS and Alzheimer's is devastating but telling someone they have ALS is most devastating because of what the future often holds for patients.

"It's hard to do without getting teary," he said.

Still, Levy frames the diagnosis in taking it day by day, and tells patients there are those who have a slow variant of the disease.

According to ALS Association statistics, the average life expectancy for a patient is two to five years from diagnosis, but more than half of the patients live more than three years, and 10 percent of them will survive more than 10 years.

In some people the disease stops progressing, and in a small number of patients the symptoms are reversed.

There's no cure, and only one FDA-approved drug, riluzole, said to extend a patient's life by three months, he said.

Dyer was taking the drug but quit considering its expense [EM] $200 a month [EM] and he didn't notice it doing him any good.

Dyer, 46, who is married and lives in Milton, is on Social Security disability insurance and is going on Medicare, but it doesn't cover prescriptions. He takes some 20 pills a day for ailments caused by ALS.

Dyer, a former employee of Wal-Mart at their distribution center in Raymond until he got too disabled to work, relies on lots of power equipment to get around and outside his trailer.

On this afternoon, sitting in his living room recliner as he talked about his disease, which he regularly researches on-line, Dyer gave up on telling his affable dog to settle down, a shaggy-eared brown and white English springer spaniel named Clancy.

Dyer pushed a button on a handheld device that tilted the chair forward and allowed him to take his feet.

"Got a power winch here. Got power everything," he said.

Dyer looked like someone standing in a rowboat before steadying himself and slowly leading the disappointed dog to a back room in the trailer.

"Git, git, you're all done. Lay down." he said to Clancy in deliberate and slow speech, another hallmark of the disease.

Dyer is outgoing and has a sense of humor, with a smile that takes shape and remains as something funny dawns on him or something he appreciates.

There's two things he's glad about this day. On Sunday his brothers and friends of theirs from work came over and built him a wheelchair ramp and deck.

Also, the MDA has dropped off a loaner wheelchair, powered by a battery. These items will make it easier to do things he likes, such as take Clancy for walks or drive to his son's baseball games.

While he has sold his truck and his pride and joy, the Harley-Davidson, he bought a van with a wheelchair ramp and lift and pivoting driver's chair. He can still drive.

Keeping as positive as possible and looking forward to things he likes to do helps him, he says.

"I've learned not to dwell on it.," Dyer said of the ALS. "Life ain't over, yet. I'm going to make the best of it."

Levy said that those who cope best are those in better health to begin with, and those who maintain a positive outlook, trying to live their life as normally as possible for as long as possible.

Levy is now caring for three ALS patients, and has cared for about 20 over the years.

About 30,000 people at any given time have the disease in this country. As a result of these numbers, the government categorizes it as an orphan disease, making it ineligible for more funding.

The largest private source for ALS research is the ALS Association, whose chapters provide patient services at no cost, including an equipment loan program and support groups.

While this is national ALS month, the ALSA chapters run fund-raisers at different times.

Dover resident Jane Durfey, family and friends formed Team Sled-Dog for the Walk to D'feet ALS fund-raiser held last September in Manchester, where the 33 members raised $14,000 for ALS research.

Durfey and others pushed her brother, James Bedard, in a wheelchair during the 3-mile walk.

He died in March of this year, at 41, after being diagnosed a year earlier.

The name for the D'feet team [EM] Team Sled-Dog [EM] was chosen by James Bedard, who lived with his wife in Vermont.

He and his brother and two sisters grew up in Somersworth.

As a kid, he always called his brother, Rod, the nickname "Sled," and Rod always called James the nickname "Dog."

What was especially difficult for family was how the disease quickly reduced James, who had always been very active and had a thin but muscular build from working in labor-intensive positions.

"We use to refer to him as the living nerve," said Durfey.

"He did the Popeye thing," she said, holding up her arm. "He made a muscle and it came out of nowhere."

In the end, he could only move one finger, she said.

Her brother remained upbeat throughout, and in the beginning was determined to make his doctor famous, with James being the patient who was going to beat the disease.

James' whole thing was: "I'm here right now. I'm going to live as best I can."

Family members got behind him, traveling to his home in Lunenburg, Vermont on weekends, building a wheelchair ramp, researching possible cures.

Asked if the family burned the midnight oil reading about a possible cure, Durfey nodded her head. "Oh yeah," she said.

"We never tried to hold on to false hope, but we were hopeful."

Durfey said her brother's main caregiver was his wife, who quit her job to take care of him.

For the main person who provides a family member care, Durfey suggests they take a break, occasionally, because the emotional strain can be very difficult to bear.

As far as people who have the disease, she said it remained important to James that he make decisions about his life.

He didn't want to prolong a life that lacked quality and decided to forego a feeding tube and a breathing device.

"He didn't want any of that," she said.

There's a financial strain on many of those with ALS, some of whom don't have the insurance to provide for their needs.

James had to be out of work for several months before he could even apply for Social Security, and then it took time for it to kick in.

By the time he died, he had only collected one check, Durfey said.

Many of those who are familiar with the disease think if researchers could figure out what causes the disease, they could perhaps find a cure.

Only a small percentage, five to 10 percent of people with ALS, have the familial classification, while 90 to 95 percent have the sporadic class, according to the ALSA. The other class is the Guamanian. In the 1950s, an extremely high incidence of ALS was observed in Guam and the Trust Territories of the Pacific, according to the ALSA.

A report released by the group at a hearing before Congress this month states that "men and women with any history of military service in the last century are at a nearly 60 percent greater risk of ALS."

The first documented case of the disease dates back to the 1800s. It was brought to the public's attention after the famous New York Yankee baseball player, and the disease's namesake, Lou Gehrig, died, June 2, 1941.

Researchers are looking at a variety of theories, viral and environmental, said Levy.

Researchers are also looking at excitotoxicity and if natural neuro-toxins contributing to cell death can be shut down, he said. Edelstein said researchers are looking at using a combination of drugs that have already been approved as means of treating the disease.

Many patients sign up for clinical drug treatments.

Some patients travel overseas for remedies in response to claims about stem-cell treatments.

As yet there has been no scientific basis for believing it helps people, Levy said.

Levy recommends to patients that they enroll for clinical trials, and that they make sure they have good medical care.

If they are smokers, stop smoking; if they are diabetic, get that under control.

"Be as active and fit as possible," he said.

Dyer is very active online, reading articles and questions and answers on message boards. He recommends people get long-term disability insurance through their workplace.

Dyer has other recommendations as well.

For one, he doesn't think people with the disease should have to wait six months for their Social Security disability benefits to start. Or if they must wait, he would prefer to see the payment be retroactive.

In addition, dealing with insurance companies can be very frustrating for someone with limited mobility. He had to provide them information about every doctor he had seen and every medication prescribed going back many years.

Dyer said he didn't know where these doctors even are now.

"It's a lot of (b.s.). It's like they don't trust you," he said. "You are already stressed enough."

In addition, the insurance companies must have a written note with a doctor's letterhead, instead of electronic verification.

"They just want to make it hard on you," he said. "A lot of people just give up, probably."

At the same time, Dyer is very appreciative of the help he receives from his wife, and other family and his doctor, and the ALS Clinic at Massachusetts General Hospital [EM] "The best people in the world," he calls them.

Dyer sent out a special thank you to the group that built his new deck and ramp.

They are his brothers Timmy and Ricky Dyer, and friend Sean Maddock, as well as the crew: Shawn, Johnny, Glenn, Dennis, Joe, David, Beast, and Casey; as well as Middleton Lumber, which gave him a discount on the pressure-treated wood.

To learn more about ALS, to volunteer for the search for a cure, or to donate to the cause, please visit the ALS Association Northern New England at www.alsanne.org or call 866-257-6663 or check out the ALS Association of Massachusetts at www.alsa-ma.org or call 800-253-3323. You can also visit www.als.org to learn general information about the disease. Finally, you can find out more about Curt's Pitch, Red Sox pitcher Curt Schilling's quest for a cure, by visiting www.curtspitch.org or calling 888-CURE-ALS.