ALS assistance a living legacy 10 years later
Thursday, June 26, 2008
The Oregonian
T en years ago this month, Portland musician Richard Burdell ended his life.

It wasn't a suicide, technically. And his friends and family understood Richard's decision. After all, he'd been living with amyotrophic lateral sclerosis -- called ALS, or Lou Gehrig's disease -- for 14 years. For the last 11, Richard had breathed only because a respirator pumped air into his lungs. He communicated with his eyes -- the only part of his body he could move.

Still, he'd lived a rich life, surrounded by friends who took him on camping trips, to movies, to Blazers games.

Richard picked June 21, 1998, at sunset, for his exit. He invited me to spend his last week at his side as he said goodbye to friends and family members.

Richard's sister Cindy Burdell was everywhere that week.

Many people had worked hard to keep Richard alive, but Cindy had always been there. She'd adored her younger brother since he was born and had stuck close since his diagnosis. "I managed his care," she says today. "I was like the CEO after he went on the respirator . . . making sure he had enough money, interacting with state agencies."

Cindy and Richard's musician friends organized concerts to raise money for Richard's care and to ensure he could stay in his own home.

Cindy had known for a long time that Richard would die. Their mother had died of ALS 15 years before. "But it was devastating," she says. "Richard and I were very close, like twins. He was my favorite person, the one person in my life who really got me. And he felt that way about me."

Soon after Richard's diagnosis, a white streak appeared in Cindy's dark hair. It never darkened.

She was a cynical, sarcastic person then, she says, angry that Richard was sick. And it was a hard road, managing his care. There were few services in Portland for ALS patients and their caregivers then. "I didn't have anywhere to turn," Cindy says.

The night Richard died Cindy was at his side, in a hospital room filled with people he loved. He looked at each of them, then indicated it was time. His doctor administered a drug so Richard would lose consciousness, then the respirator was turned off.

Moments after his heart stopped, "I had to leave the room," Cindy says. "I had to get out." The next day she said to her best friend, " 'I'm here.' It was the weirdest feeling: I was still on this Earth and he wasn't."

She struggled with her own identity. Who was she, if she wasn't a person trying to keep her brother alive?

And then she realized what she could do with all the energy generated by grief: She could create an organization to help people with ALS. "We had the Richard Burdell Memorial ALS Foundation set up by November of 1998."

Slowly, the foundation found its legs. After a few years it became the ALS Association of Oregon and Southwest Washington.

In 2002 Cindy organized the first local Walk to Defeat ALS. "We raised enough to hire Lance Christian," a social worker still with the agency. "He built our programs I'm so proud of now," Cindy says. "He was also instrumental in building our amazing center."

The Providence ALS Center opened in 2005 as "a multidisciplinary clinic for ALS patients." If there had been a clinic like it when Richard was alive, his life would have been easier.

New technology also would have helped. "They have stuff now that is so cool," Cindy says. A technology expert helps patients at the clinic. Development people raise funds. Six services people work in four locations in Oregon.

These days Cindy, whose title is founding director, does a lot of advocacy work.

Researchers have discovered military veterans -- whether they served in combat or not, and no matter in what branch they served -- are at greater risk of getting ALS than people who did not serve in the military. So Cindy "lobbies for the Department of Defense to do research" to determine why. "Because there's some connection," she says.

Before Richard died, Cindy was unhappy in her career. Today she knows she's doing what she was meant to do. And the work keeps her close to Richard.

"I think of him incessantly. I'll always think of him." After 10 years, "it's not painful anymore. Although, I still don't want to watch that movie with Gary Cooper playing Lou Gehrig."

Cindy says today she's "very proud" of "having done something to help people. But it's not just me. I'm just like the little engine. It's the people I work with . . . who deserve the credit."

She grieved and she fought, after her brother Richard's death. "But it has led to an amazing organization. And the ALS patients are not alone anymore.

"And you know what? Neither am I. I'm not alone anymore, either."

For more information, go to www.alsa-or.org

Margie Boule: 503-221-8450; marboule@aol.com

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