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ALS patients find room for more life in less time to live it
By MARY SWIFT
P-I COLUMNIST

Bellevue's Ruth Roy and Kent's Steve Thomas had several things in common.

Both were bright. Both much-loved.

And both had something neither would have wished on the other -- amyotrophic lateral sclerosis.

Also known as Lou Gehrig's disease, amyotrophic lateral sclerosis is a progressive motor-neuron disorder that most often affects people between 40 and 70, and eventually leaves them paralyzed and unable to speak, swallow and, in the end, breathe on their own.

Steve Thomas, an attorney who loved golf and had climbed Mount Rainier, found out he had it in the summer of 2002. One day as he raced home to meet his wife, Candi, for a Mariners game, he discovered his right arm wouldn't work.

Their lives changed in those few moments. Instead of going to the game, they rushed to the hospital. Two days later, a neurologist told them he probably had a motor-neuron disease. A month later, they learned it was ALS.

Suddenly, there was no time to waste -- and they didn't. The Thomases quickly sold their recently remodeled third-floor condo in Des Moines and moved to a first-floor unit. He quit work and the two took a month-long road trip. Later, they took two cruises, and traveled to Vegas, Palm Springs and Hawaii.

Steve Thomas joined a support group with the Evergreen Chapter of the ALS Association, quickly bonding with new friends who had the same devastating diagnosis.

They smoked cigars and went to the movies, laughing as they raced to see who -- each increasingly limited physically -- could get his money out of his pocket first.

"Quick with a sense of humor and long on courage, that was our Steve," says Candi Thomas, who became his full-time caregiver.

"It's a 24/7 job," she says. "You are beyond exhausted -- but you don't know it."

The Evergreen chapter provided information and understanding when she needed it and "helped fill the void" when Steve died in 2004 at the age of 61.

Ruth Roy's diagnosis came in September 2005 -- an explanation of mounting physical issues.

She taught fifth grade in a program for gifted students in the Issaquah School District. She was as gifted as they are, says Margaret Moore, a former colleague, now retired.

"She was jolly, cheerful, highly opinionated," Moore says. "She cared about all these children, celebrated their victories, spurred them on and found areas of interest where they could soar."

Just as it had for Steve, the diagnosis put Ruth's life on fast-forward: She and her husband of 37 years, Robert, traveled to London and Rome.

"Ruth had perfect pitch and she was a fabulous pianist," Moore says. "One of most poignant memories is coming to visit her right after she was diagnosed. At the door, I heard Chopin. I went in. Ruth was at the piano. I sat down and turned pages for her. It was the last time I heard her play."

Ruth died May 4 at her home at age 58.

"To Ruth, teaching was a calling, not a job," her husband wrote in an e-mail sent to friends informing them of her death. "She was on a mission to extract excellence from her students and nothing made her happier than to see them do well."

Friends established the Ruth Roy Scholarship Fund in her honor, Moore says. The money will be used to provide summer enrichment opportunities for gifted students in the district.

Ruth will be remembered at a celebration of her life and accomplishments at 5 p.m. on May 30, in the Multi-Purpose Room at Apollo Elementary School where she taught.

Thomas, Roy and others who fought or are fighting the ALS battle will be honored at a candlelight vigil at 7 p.m. Monday at the offices of the ALS Association Evergreen Chapter, 19110 66th Ave. S., Suite G-101, in Kent.

May is national ALS Awareness Month. The local vigil is in conjunction with a similar vigil scheduled in Washington, D.C., as part of an annual advocacy campaign. For information, go to alsa.org.

P-I columnist Mary Swift can be reached at 206-824-1541 or maryswift@seattlepi.com.