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POSTED: Friday, Sep. 19, 2008

Birch Bay man recounts battle with ALS

Little by little, the disease comes for Bill Gardner - robbing the muscles in his lower back of their strength until he can no longer stand straight, weakening his legs until even short walks on flat ground exhaust him, stealing the power from his lungs until they need the help of a machine.

Eventually, unless a cure is found, Lou Gehrig's disease will take all of him. And, yet, on Saturday, Sept. 20, he will tell the crowd at a benefit walk that although death hovers, his life is good.

"Even though I'm losing my ability to breathe, I still have a great deal of joy with my loved ones around," said Gardner, a 69-year-old Birch Bay resident who was diagnosed with the disease a year ago.

After he speaks, the family and friends who make up Team Gardner will participate in the fifth annual Walk to Defeat ALS, a Bellingham fundraiser organized by the Evergreen Chapter of the ALS Association.

Some 5,600 U.S. residents are diagnosed with what is also known as amyotrophic lateral sclerosis each year, according to the ALS Association, with an estimated 30,000 Americans living with the disease at any time.

The cause isn't understood. There is no known cure for the disease, in which the body's motor nerve cells are destroyed - in turn killing the brain's ability to transmit messages to the voluntary muscles that people control to do things like walk, breathe and move their arms.

And that causes the muscles to waste away over time, leading eventually to paralysis of the entire body. Death occurs when the diaphragm, the muscle that makes it possible to breathe, no longer works, and patients decline to undergo a tracheotomy to be hooked up to a respirator.

ALS patients live an average two to five years after diagnosis, according to the ALS Association.

The walk on Saturday in Bellingham will raise money for research and to help those with ALS and their families.

"Our goal at the Evergreen Chapter is to improve the quality of life for people living with ALS, but our mission is to find the cure," said Mary Rebar, patient care coordinator for the North Sound.

"Our walk is a time to celebrate life; friends currently living with ALS and our ALS angels, friends who have passed away," she added.

For Gardner, the signs that something was wrong began two years ago, when he first noticed the weakness in his muscles.

He went to see doctors. He underwent this test and that. He was poked. He was prodded. His spine was tapped.

"There's no one test that says you have ALS," explained Gardner, a Bellingham native who taught English at Sehome High School for 29 years.

Finally, a year ago this month, and after a long process of elimination, neurologists broke the news.

"When we first discovered the disease, we did not want to look into the future at all," Gardner said.

Then the ALS Association came and helped him, with information about what to expect next, with a comfortable chair that also lifts him so he can get up, with a wheelchair, with a walker, with a support group.

"It's really through them that I learned a lot about the disease," he said. "If you're prepared, it takes a lot of the fear out."

So he will give back to the organization that has helped him by talking to those walkers gathered on Saturday.

He will tell them that he is a lucky man. He has his family. And he can still talk and swallow and feed himself, because the disease didn't attack those muscles first. He's not in pain. He still can meet three times a week to play music with friends for short periods; ALS hasn't yet taken away his ability to play his recorder.

But the disease did come for his lungs and diaphragm first, which usually come under attack in advanced stages of the disease. These days, he uses a portable machine the size of book to push air into his lungs and pull out the carbon dioxide because his lung capacity is below 50 percent.

"When you lose the ability to breathe, you die. With my ALS, my life will be fairly short," Gardner said, simply.

But that's the future, and that's a dark place. Today, he can admire the sun sparkling on the water outside his home. This moment, it's a beautiful thing.