On the Road to Find a Cure
Today, 100 people will strap on a helmet and start pedaling to raise money for research on ALS, or Lou Gehrig’s disease
By Anna Tong
atong@thetribunenews.com

TRIBUNE PHOTO BY JAYSON MELLOM

Glenn Pickett, left, and Bonnie Markoff prepare for the ALS Central Coast Century Bike Ride. Pickett, whose brother had been diagnosed with amyotrophic lateral sclerosis, founded the ride to raise money for research.
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Arroyo Grande resident Kevin Webb will participate in a 100- kilometer bike race today, though he has barely had time for more than a few hourlong practice sessions each week.

But, he says, he’s familiar with long distances. Two or three days a week, he drives two-and-a-half hours to visit his wife, Tara, who is hospitalized in Ventura County because amyotrophic lateral sclerosis, or ALS, has left her dependent on a ventilator.

Friday, Webb was at the hospital, learning how to operate her ventilator. Early this morning, he was expected back in San Luis Obispo County, getting ready for the ALS Central Coast Century Bike Ride.

The ride is an annual event that raises money for the Bay Area ALS Association. The event kicked into gear three years ago, when Arroyo Grande resident Glenn Pickett, whose brother had been diagnosed with ALS, wanted to combine his love of bicycling with his desire to further ALS research. This year, there are 100 participants in 10 teams from throughout California.

The ride features four different routes—100 miles, 100 kilometers, 25 kilometers and five kilometers—and is being held at the Avila Beach Golf Resort. After the races are over, there will be a victory dinner and award ceremony.

“We’ve raised about $40,000 right now, and we hope it will surpass last year, when we raised $60,000,” Pickett said.

So far, Team Hot Dawg has raised the most — more than $13,000. Wearing signature tie-dyed bike jerseys, Team Hot Dawg comprises Matt Chaney and his family. Chaney, a former football player and avid outdoorsman, was diagnosed with ALS

seven years ago. His legs are unaffected so far, so he is planning on doing the 100-mile race on a recumbent bicycle. Team Hot Dawg includes Chaney’s two young sons, wife, brother, and, originally, his father-in- law. But two weeks ago, Chaney’s father-in-law, Joe Miller, was killed in Southern California while training for the event. Miller will be honored at the award ceremony.

ALS is commonly known as Lou Gehrig’s disease, after the star baseball player who was diagnosed at the height of his career. The disease causes degeneration in the neurons of the brain and spinal cord. Diagnosis ensures a slow and sure path to total paralysis. There is no cure yet.

For Webb’s wife, ALS affected her speech first, as they noticed her words beginning to slur. The disease started to affect her swallowing, moved to her neck, and then her limbs. Now, she is bedridden and cannot speak, and uses a computer and keyboard to communicate.Webb said her inability to speak is the most painful consequence.

“It’s the fact that she can’t express herself as she always loved to,” he said. “She was a talker. … You can overcome a lack of mobility, but the lack of communication is by far the hardest thing.”

Webb said he works so hard to raise money for ALS research because of the nature of the disease—his wife remains lucid while her body is deteriorating.

“All the important parts are still there. That’s still Tara; that’s my wife,” he said. “That’s the great cruelty of it, because all the physical parts are deteriorating, but the spirit and intelligence and so on and everything you love about that person is still very much there.”


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