BY STEVE LEVIN Californian staff writer firstname.lastname@example.org
Michael Gagner had two careers. The first was 22 years as a petroleum engineer in different locales around the country.
The second was living with the progressive, degenerative, neuromuscular disease Amyotrophic lateral sclerosis, which is always fatal.
"The second career," Gagner told his wife recently, "was by far the more satisfying."
Gagner, 56, died Tuesday from respiratory failure.
His diagnosis nearly 14 years ago with the disorder also known as Lou Gehrig's disease transformed him into an advocate.
He and his wife Stacy Inman created the now 10-year-old Kern County Walk to Defeat ALS, established a local support group, tested equipment and successfully lobbied Congress to allow those with ALS to bypass Medicare waiting periods.
ALS commonly takes up to 14 months to diagnose because there's no single test for it. For Gagner, the journey began on a December 1998 drive to Colorado, when his wife noticed him constantly squeezing a putty ball.
In January, his doctor referred him to a neurologist for a small atrophy in Gagner's hand. By the end of 1999, they had the diagnosis.
"Guess what? You have a lot of serious conversations," Inman said. "You live life differently when you know you have a terminal disease.
"We did not hide from the fear. We tried to educate rather than run away."
By 2001, Gagner had gone on disability from his job. But the disease did not slow him down.
He walked their son, Bryce, to school every day, initially using a type of leg splint to help him walk and then a motorized wheelchair.
He did the grocery shopping, the laundry, helped with homework and ran the household while his wife, an attorney, continued working.
Before 2004, the couple would make an exhausting four-hour roundtrip to Westlake Village for the nearest monthly ALS support group. That led to their creation that year of the Kern County Walk to Defeat ALS, which drew more than 200 people and raised $35,000, enough to pay for a full-time local care manager to help Kern families cope with the day-to-day challenges of ALS.
The average life expectancy of an ALS patient from the time of diagnosis is two to five years. About 10 percent of the country's 30,000 ALS patients survive more than 10 years.
Gagner utilized a motorized wheelchair for most of the past decade, and after becoming paralyzed from the neck down he moved it by turning or nodding his head via an attached halo controller.
When an operation or piece of equipment didn't work -- and there were setbacks -- Gagner made sure to leave written information for those in his support group facing similar decisions, because it wasn't available for him.
"I think his legacy is helping people with ALS and their families," his wife said. "We met so many amazing people through this horrible disease.
"Our life is so much richer. You couldn't imagine saying that."
In addition to his wife and son, Gagner is survived by a daughter, Michelle Flak of The Woodlands, Texas; two sisters, Yvonne Sparks of Athens, Texas and Kathy Hannah of Austin, Texas; two brothers, Ron Gagner of Tucson, Ariz. and Tim Gagner of Houston, Texas; and two grandchildren.
A memorial service is scheduled for 10 a.m. Nov. 18 at First Congregational Church, 5 Real Road.