On their feet to fight ALS
By NATALIE HOFFMAN, Register Staff Writer
Sunday, May 13, 2007
When Napan Bill Ward, a nine-time golf champion at Napa Valley Country Club, learned he had ALS -- also known as Lou Gehrig's disease -- he went into shock for several weeks. "Once that passes, you get to 'Why me'?" Ward said.

"ALS destroys all of the voluntary muscles over time. The motor neurons in the brain and on both sides of the spine don't send signals to the muscles," said Ward, whose right hand and arm are the only areas affected so far. "The later stages of ALS are when the physical pain comes -- with lost mobility. You're in a wheelchair and not breathing and swallowing on your own."

While fundraisers are typically hosted for more common diseases such as cancer, diabetes and heart disease, she said, many people don't know much about amyotrophic lateral sclerosis.

To counter that, Walk to D'Feet ALS was held late Saturday morning at Kennedy Park to raise awareness about ALS and research funds to battle it. Ward's daughter, Kristen Waters and son Andy Ward attended the two-mile walk, along with Ward's wife, mother and two of Ward's Sigma Alpha Epsilon fraternity brothers.

Battle not just physical

Ward, 62, was diagnosed with the fatal disease in March, shortly after undergoing a test that uses electrical currents to measure muscle response. Two weeks after the test, Ward's diagnosis was confirmed during a visit with the chief of neurology at a Kaiser facility in Sacramento. He is now under the care of the chief of neurology at Kaiser Permanente Vallejo Medical Center.

Ward, who is in the early phase of the disease, said his life has changed drastically because he knows he will not be able to do the things he'd always planned to do.

He said having a positive attitude and thinking only about his immediate future are necessary tactics. "If I start thinking of other than the immediate short-term, I get very bad mental images of what I'll miss out on and how life is going to end. Those are not glorious pictures. ... This battle is not only physical but a real mental challenge, especially for someone who has been active," Ward said, referring to his golfing career and past hiking endeavors.

Currently, his main physical challenge is fatigue, he said, which prevents him from engaging in many activities he used to enjoy. Ward also has acid reflux disease and irritable bowel syndrome, both of which are aggravated by ALS.

"The biggest thing with ALS, at least for me, is the fatigue in the initial stages. Muscles get weaker; it's debilitating. Sometimes I have days when my energy level is decent and there are other days when it is zero."

A monthly ALS support group at Queen of the Valley Medical Center helps Ward deal with fatigue and the other challenges ALS presents. That's where he met Napans Mike White and Lee Kramer, who also have ALS. Kramer has lived with the disease for 17 years, Ward said. "You receive a lot of good information at these support groups and information that's helpful in going forward."

Ward takes a medication called Rilutek, which he said will add months to his life. "It increases the lifespan about 5-10 percent. If the average lifespan after diagnosis is two to three years, you get an extra few months."

Ward plans to take part in a clinic at California Pacific Medical Center's Forbes Norris Research Center at the end of the month, which provides support to patients and their families while offering experimental treatments for ALS.

Ward's wife, Kim, a retired third-grade teacher at Salvador Elementary School, said an ALS diagnosis is something you don't think will happen to your loved ones. But her husband's diagnosis has brought her family closer.

For now, she said, her husband no longer plays golf. "A year ago, to say that he gave up golf wouldn't be a possibility. His dad was a pro and he grew up playing golf."