Claire Culver is angry and anxious, sad and scared.

And Michael Culver is simply very, very angry.

The object of their anger is an intruder into their five-year marriage that attacks Michael, daily stealing a little more from his life.

The disease is amyotropic lateral sclerosis, or ALS, and at least for now, there's no way to stop it.

* * *

ALS, better known as Lou Gehrig's disease for the well-loved baseball player who died from it at age 41, is a progressive neuromuscular disease in which the motor nerve cells are destroyed, cutting off communication between the brain and muscles and leading to loss of muscle strength, twitching and cramping in the muscles, and difficulty speaking, swallowing and breathing.

ALS patients become trapped in their bodies as they lose the use of different muscle groups: legs, arms, speech. Their minds remain intact as their bodies cease to function. Most die of respiratory failure, after their breathing muscles fail to work. The process usually takes two to five years.

The disease cuts across age, gender, racial and socioeconomic lines. Anyone can get it.

Michael Culver, 34, was diagnosed in August 2002. An avid outdoor enthusiast who regularly hiked and backpacked some of East Tennessee's most strenuous trails, Michael was bitten by a tick that summer. When he began noticing that his leg muscles didn't always seem to be "listening" to him, as he told Claire, he assumed he had Rocky Mountain Spotted Fever, which is carried by ticks.

But antibiotics didn't fix the problems, and Michael's primary-care physician sent him to a neurologist, who eventually - after a battery of tests - diagnosed ALS. A trip to ALS Center of the Carolinas in confirmed it.

ALS is diagnosed by ruling out other conditions. Many medical problems have similar symptoms.

Knoxville neurologist Dr. Berta Bergia, who sees six to 10 ALS patients a year, says she hates to make the diagnosis.

"There isn't any good treatment for ALS, and we don't know what causes it," Bergia says. "It's just such a horrible disease."

The Culvers were shocked.

"You know it's bad," Claire says, "when you're saying. 'Please let it be a brain tumor.'"

* * *

Claire and Michael Culver met in their teens while working at the Knoxville Zoo. Close platonic friends for a decade, the two began spending increasingly more time together. When passion did hit, it was instantaneous. They moved in together and were married a year later.

In 2002, the Culvers were still having fun. After a yearlong stint in West Tennessee, where Michael grew up, they'd moved back to Knoxville, where both found satisfying jobs. They bought a house and began saving for retirement and planning a long future together.

Now that future is uncertain. While the average lifespan after ALS diagnosis is two years, some people die sooner, while a few - like famous physicist Stephen Hawking - live for decades with the disease.

Michael's hoping his progression will plateau. He's now in a wheelchair most of the time, although he can still walk a little. He's noticed it takes more effort for him to breathe.

"I've lost motor control in my legs and in my right arm," he says. "My left arm is completely unaffected; I have no difficulty whatsoever."

He pauses, then continues with a wry laugh, "I'm right-handed, of course."

"They say he's progressing very rapidly," Claire says, "and we can definitely tell." In November 2001, she remembers, Michael was hiking the Smokies' difficult John Muir Trail to see a meteor shower In November 2002, the Culvers ordered a wheelchair.

Hiking is a bittersweet memory for Michael, as are most of the things he enjoyed: amateur magic, martial arts, building medieval weaponry in the back yard. Yet there's at least one thing he hasn't yet had to give up: his job.

Michael is system administrator for Phoenix Systems, doing networking and technical support for a company that, ironically, sells and maintains software that tracks and organizes results from clinical trials around the world.

Before working for Phoenix, he developed equipment for people with disabilities - another ironic twist, now that he's looking at the possibility of building something for his own use.

Work is an outlet, something Michael enjoys. But it's also a necessity, because the Culvers have found having ALS is expensive beyond what they ever imagined.

* * *

The FDA has approved only one drug, Rilutek, for the treatment of ALS. Michael has good insurance, he says; he pays a co-payment and 15 percent of the total prescription drug cost, which comes out to about $600 per month for Rilutek alone. The combined other drugs he takes cost about $300 a month.

There are regular doctors' visits, and fees still unpaid from the tests to get the diagnosis - around 250 of them. The dual-income couple went in six months from being upper middle class to being in "crushing" debt, with collection agencies calling daily.

Like many ALS patients, Michael stopped taking Riluatek because of the financial burden. Yet he lost so much ground in the four months without the drug that the Culvers decided that wasn't an option. On Rilutek, Michael hopes to reach a "plateau" where he can begin adjusting to what the disease has taken from him - before it takes more.

As the disease progresses, Michael will need more adaptive equipment. Some he can get through organizations; some the Culvers will just have to find the funds for.

"The average cost of living of an ALS patient, after insurance, is $200,000 a year, for things that aren't covered (by insurance)," Claire says.

Their combined income is too high to qualify for federal aid; Michael must be out of work for six months - which he doesn't consider an option - before he can receive Social Security benefits. Claire is making jewelry on the side to try to bring in more money.

"You watch the episode on 'ER' where Dr. Mark Green finds out he has a brain tumor, so he takes his daughter to Hawaii and has this wonderful bonding experience," Claire says, shaking her head. "While Michael's dying, we'll be watching reruns of 'Welcome Back, Kotter' because we can't afford to go eat at Krystal and we don't have cable anymore.

"One day I went to my mom, and I said, 'You know, I'm going to be a widow, and I'm 35. That's not right'" she says. "We'd wanted to have children so badly. Now, I'm not even going to have his children."

But Claire doesn't like to lean too heavily on her mother, who's dealing with recurrent ovarian cancer, or her father, whose own medical problems necessitate he lives in a nursing home. Or on Michael's family, who also have health problems.

So she found another outlet and called it ALSNA.

* * *

Claire began the ALS Support Network of Appalachia (www.alssupport.org) to help others who are dealing with ALS with limited knowledge and funds.

"There's a lot of people out there who have no clue where to turn," she said.

The nonprofit network will cover the 16 counties east of Knoxville, helping people find the resources available to them. Already, Claire is a fount of such information and spends hours answering e-mails. She hopes to put ALSNA leaflets in every neurologist's office.

ALSNA also will provide monetary grants to families living with ALS. Claire is gearing up for fund-raising.

She's planning to take part in New York's "Ride for Life," a nine-day, 160-mile wheelchair ride from the Montauk Point Lighthouse, on the tip of Long Island, to Manhattan. Claire, who says she's is not as fit as her husband was, is diligently training and dieting to get into shape for that ride.

Michael isn't yet sure that he'll participate in the ride, even if he's able. A private person by nature, he fiercely wants to avoid becoming an object of pity.

But he's enthusiastic about ALSNA, which he thinks provides a necessary service for other ALS patients as well as an outlet for Claire.

He worries about Claire as well as about his parents, who are "devastated," he said. As for himself, he thinks he'll eventually come to terms with ALS, and he's confident Claire will be there to help him. What he dreads most, he said, is "the total inability to care for myself: dress myself, feed myself, take care of toiletries. I don't know what that's going to be like, and I shudder to think."

In the meantime, he's staying proactive, seeking out clinical trials for which he might be a candidate and technology that could help him. He isn't taking the route Bergia says wipes some of her patients out financially - pouring money into expensive alternative treatments that have little or no benefit.

And he's staying angry, at least until something better comes along.

"I keep thinking they're going to find something else, that they've missed something, somehow," Claire says. "They say you do that: you go through denial and anger and grief, and then back to denial. ...

"I've done that. Michael just prefers to stay firmly entrenched in the anger phase, and he's doing a good job of it - he's really angry. I can't say that I blame him."