WALNUT CREEK -- When a doctor diagnosed Jim Barber with Lou Gehrig's disease, the attorney responded in a way few had. He asked what he could do to help the cause.
"That was a remarkable (reaction) to being diagnosed," his son, David Barber, said Sunday.
The Barbers were among hundreds Sunday at Heather Farm Park for the ALS Association Golden West Chapter fundraising walk, an annual event organizers say brings solidarity to what can be an isolating disease.
ALS -- amyotrophic lateral sclerosis -- is a fatal disease attacking nerve cells in the brain and spinal cord that can lead to the loss of the ability to move, speak, swallow and ultimately breathe. People with ALS are usually given between two to five years to live.
"What we say is every 90 minutes someone is diagnosed and every 90 minutes someone dies," said Jenica Lancy, director of marketing and communications for the ALS Association Golden West Chapter.
The chapter welcomed people with ALS and their families, friends and supporters from all over the state for the two-mile walk to raise money for support services, research and for work to change public policy related to the disease.
Many people wore T-shirts with team names to support their friend or family member with ALS. Others wore T-shirts to remember people they have lost to the disease. As of 10 a.m., organizers had raised about $108,000 of the $134,000 goal.
The costs for home care for people
For Patrick Suter, 36, the costs to care for his mother, Cyndi Suter, escalated with the progressive form of the disease she had. He drove from San Francisco to Redding each weekend for nine months to care for his mother, who died in 2010.
"Every day, she would wake up and lose another ability. She can't move this arm, the next day she can't walk," said Suter, who said an ALS organization helped cover the costs her insurance wouldn't.
Before the walk began, David Barber stood with his hand gently touching his father's. The elder Barber, in a wheelchair, has beaten the odds. While most patients are given up to five years to live, he was diagnosed six years ago and can still speak.
During this time, Jim Barber was part of the committee that successfully pushed to have ALS included on tax returns so people can donate to the cause. So far, it has raised $450,000, he said.
"They give you two to five (years). I'm sneaking up on six and still talking and breathing," said Jim Barber, a business litigation attorney who played football at UC Santa Barbara.
David DeBolt covers Concord and Clayton. Contact him at 925-943-8048.