By Elizabeth Sivesind
CONTRA COSTA TIMES

FROM A DISTANCE, Matt Chaney looks just like the rest of the dads on the soccer field coaching their elementary school-age players on the fine points of trapping and passing.

His 6-foot, 5-inch frame and rock-hard calf muscles are the first indication Chaney is a former jock. The tidy lines of cones, used to organize running and passing drills, not to mention his ease at dribbling the ball, are also clues that the guy has done this before.

But watch carefully, and it becomes clear Chaney is working harder than the other dads out there. It's a sticky, hot day, but the sweat soaks through his T-shirt. While he scrimmages with the kids, he becomes visibly fatigued. He stops for a minute on the sidelines to explain the throw-in motion to a player, but he can't lift his arms.

"The overhead doesn't work for me anymore," Chaney, a Lafayette resident, says with a smile to the third-grader, who was on his team last year.

Chaney, 44, is losing the use of his arms to amyotrophic lateral sclerosis, or Lou Gehrig's disease, a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord. He is one of the 5,000 people diagnosed with ALS each year, and roughly 30,000 Americans have the disease at any given time.

So how does Chaney, a stay-at-home dad who has taken on full responsibility for housekeeping, cooking, volunteer yard duty at the elementary school and chauffeuring his own kids around while his wife works full time, get out of bed every morning?

"I'm treating it like a flu," he says. "If I let it become more than it is, then it will be."

Which is particularly remarkable when one considers what daily life with ALS is like. In the 31/2 years since Chaney's diagnosis, his upper-body strength has degenerated by 85 percent to 95 percent. Picking up a glass of water, unscrewing the cap of his gas tank, wrapping a towel around his waist after a swim -- things any well person takes for granted -- have become difficult. Turning on a light switch can take two hands.

The disease, which often moves from the upper body to the legs, has attacked his tongue, making his speech slightly slur on certain letters and words. It also can prompt uncontrollable fits of laughter or crying.

For Chaney, it began with his right hand in the winter of 2000. It was a cool night in March and he couldn't grasp his guitar pick as he played. He had dislocated his finger the year before, so he attributed the strange sensation to the injury.

Before long, he was preparing for carpal tunnel surgery, as recommended by a hand specialist. When he mentioned cramping muscles to the doctor, the surgery was halted. He was sent to a neurologist, and by spring of 2001 he had two physicians concurring he had ALS. It was the best explanation for why his upper body twitched constantly, "like little lightning strikes," Chaney says, which were sometimes bad enough to wake him from a sound sleep.

Some people can live for many years with the disease, but walking, speaking, swallowing and breathing become increasingly labored. Eventually wheelchairs, as well as breathing and feeding tubes, become a way of life. Though the body slowly deteriorates, the mind in most cases remains sharp until death, which can occur as soon as three to five years from diagnosis.

These are all considerations Chaney and his wife, Liz, an architect, are facing head on, though they do their best to shield their two young sons from the harsh realities of the terminal disease.

And Chaney considers himself a very lucky man. He is dealing with a form of ALS that is slow to progress, which is a good sign. If the disease progresses slowly from the get-go, it most likely will continue at that pace. Chaney has a friend in Moraga, a man just his age who was diagnosed 18 months ago, who is already in a wheelchair.

And as with everything in his life, from putting himself through school as an undergraduate at UC Berkeley to perfecting his golf game, Chaney never gives up.

In May, he took on a new challenge in his fight against ALS. He signed up for a series of charity walks sponsored by the Bay Area ALS Association. The nonprofit group hosts seven walks in Northern California, from Fresno to Napa, to raise funds that go toward grants for research as well as financial assistance to ALS patients. Chaney decided to participate in all seven of the two-mile walks, making himself the first to do so in the history of the organization. For that reason, he has been nominated for honorary chairman, a position normally reserved for city officials.

Part of his impetus to walk is to raise awareness for Proposition 71, or the California Stem Cell Research and Cures Initiative, which is on the November ballot. Many hope the initiative will lead to medical breakthroughs that could treat a range of neurological diseases, from Alzheimer's to Parkinson's.

With the help of friends, neighbors and family members, Chaney has raised more than $30,000 in just two walks. With five to go, he has already gone well over his goal, which originally was $5,000 per walk.

He's inspired a lot of participation along the way. Mike Ahr, a family friend and fellow coach during baseball season, challenged his team to a home run derby in order to raise money for Chaney's first walk in May. For every home run made at the derby, Ahr would put $2 toward the ALS charity walk. Before long, parents of the team members caught wind of the idea, and matched Ahr's $2 donation. In a 45-minute time period, the team of 12 raised $1,008 (about $19 per home run).

Ahr, a Lafayette resident, says he knows exactly why the community has responded with such enthusiasm to Chaney's cause. "Matt has touched people in so many ways," says Ahr. "He has put so much time into these kids (sports teams), and he has never expected anything back. We've rallied for him because it's the least we can do."

Brad Zenoni, a sophomore at Campolindo High School, signed up to walk in honor of Chaney on Oct. 2 in Alameda. Brad, who knows the Chaneys from the local swim team, has already raised more than $500.

"Some people who are diagnosed with diseases take it as a defeat," Brad says. "They roll over and they give up. Matt never does that. He is always a fighter."

Chaney, certainly, is doing his best to keep the disease at bay. He has done everything in his power to slow down its progress, including participating in various medical studies to treat symptoms. He exercises at the gym three days a week. He digitally records some of his conversations, then downloads them to his computer, in order to keep track of how his speech is doing.

Three months ago he abandoned Western medicine to try an herbal remedy that has been used in China for 30 years to treat neurodegenerative diseases including ALS. He is on permanent disability from his job as salesman for a chemical manufacturer, and has eased up a bit on volunteer activities so he can devote more time to acupuncture, massage, meditation and extensive stretching sessions to keep his joints and muscles supple.

"It's bad, there is no doubt about it. It's unexpected. It's not fair," Chaney says. "But it's not the end of the world."

That's not to say his world hasn't changed dramatically and won't continue to do so. This summer he broke his collarbone on a family vacation while skim boarding in the waves, a favorite activity. His upper body couldn't roll through the falls the way it used to. Even daily duties such as folding laundry have become so difficult it can take four hours to fold four loads. So now his sons help out.

Everything, Chaney says, takes a lot more concentration and effort. But he and his wife, Liz, have a rule that she can help him around the house only if he asks for it, which she says is very hard for someone like Matt to do.

"As hard as Matt tries to be strong, when you are faced with something like this, you do feel sorry for yourself," Liz says. "The despair is palatable. He tries to keep up his appearances, but you do go there sometimes."

Despite his upbeat approach, he has to prepare for the worst. A few years ago, Chaney spent more than four hours recording his voice saying 1,600 phrases for a program called the ModelTalker, which originated at the University of Delaware. If he ever loses his speech ability and needs to speak using a machine, this software program will synthesize his own voice rather than use a robotic recording.

That may or may not be a part of his future. For now, he is happy that he is still independent and can take care of his children.

"You play the hand you are dealt with and you try to have a poker face that fools the dealer," he says. "If it pans out that way, great. If it doesn't, I will go down trying."