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  Ernie Smith battles ALS with determination, grace
Posted May 25, 2004 in PALS Profiles

ernie_smith.jpgBy JANICE AUSTIN
For The Salinas Californian

"I believe there is a reason for everything," said north Salinas resident Ernie Smith. "I don't know what the reason for this is yet. I may never know."

A giant of a man at 6 feet, 5 inches, Smith sports a handlebar mustache and exudes an air of warmth and cheerfulness.

In 1997 Smith, who owned a construction business, found he was pulling himself up ladders, rather than climbing because he lacked the strength to lift his legs.

"I knew something was going on then," he said. "That's when I went to a doctor."

A local neurologist determined that all his symptoms were leading to a diagnosis of amyotrophic lateral sclerosis (ALS). He referred Smith to a San Francisco medical center for further tests.

"What they do is rule out everything else," Smith said. "There isn't yet a positive test for this. That's one of the problems; they can't find a common factor that everyone has to diagnose it. It's a very peculiar illness. One of the reasons they're having trouble getting a handle on it is that everybody progresses differently."

ALS is often called Lou Gehrig's disease for the baseball great who had and brought attention to the disease in 1939. It is a progressive illness that attacks nerve cells in the brain and the spinal cord. When the nerves die, muscles deteriorate.

The 65-year-old Smith has a slow-progressing form of the illness. He has been affected in his left leg, right arm and neck.

He uses an electric wheelchair, drives a handicapped-accessible van and sleeps with a breathing machine to keep his lungs functioning.

He remodeled his house to make it wheelchair accessible.

"I have a drive-in shower," Smith said. "With the wheelchair, not the car," he added with a smile.

Smith, who has lived in Salinas for 35 years, has sung in barbershop quartets for 40 years and was inducted into the Far Western District Barbershop Hall of Fame. He has been involved with the Dixieland Monterey Festival since its inception in 1980, and has been a member of the Boy Scouts of America for 48 years.

Although his activities are limited now, he continues to sing with a barbershop quartet, serves on the board of directors for Dixieland Monterey and is on the District Eagle Board of Review for the Monterey Bay Area Boy Scout Council.

He also serves on the advisory committee for the Creative Living Program at Salinas Adult School and ushers at his church.

He participates in the REAP program at the Adult School, goes to physical therapy and attends a water aerobics class at the Kearns Pool in Monterey. He's involved in the ALS support group for the tri-county area.

"I'm a people person," Smith said. "Keeping active keeps me going. Keeping a positive attitude is another big part of it."

Smith encourages people to support ALS research and the Muscular Dystrophy Association (MDA).

"We're included in the 22 different diseases that MDA covers, so, I'm one of Jerry's kids," Smith joked.

"He has such an upbeat personality," said Miriam Smith, his wife of 41 years. "If he didn't have that, both of us would be down the tubes. His being so up has been a real saving grace. He has helped so many people with that. He's always been so robust and happy and outgoing."

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