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Portland Parkinson's choir gives joy and perhaps symptom relief, to patients

Wednesday May 23, 2012

David Stabler

Oregonlive.com - Eight voices rise softly to sing. "As we travel down this weary road, we need strength to carry on our load."

The sound is gentle. The walls don't shake. The windows don't rattle. You would not mistake these elderly singers for the Mormon Tabernacle Choir, but they don't whisper, either. Each one has Parkinson's disease, and they call themselves the Tremble Clefs, a play on the tremor that often occurs with the disease.

Some voices are stronger than others. One woman barely moves her lips to the African-style song "Amani Utupe." No matter, they sing because they can, and because it might help.

"Not bad at all," says Megan Elliott, an upbeat music therapist who leads the group every Thursday with a piano, guitar and drum. "Can you give me more? Let's try it again."

"Do we get to sway with the music?" a woman asks, to laughter. Yes, they laugh at themselves, sometimes.

Singing is good vocal exercise for anybody, but it may particularly help with Parkinson's, experts say. Patients with the disease often lose volume and clarity in their voices. Singing pumps up their sound and makes patients aware of their breathing and posture.

Parkinson's is a chronic neurological disease with no known cause. While it's not fatal, it has no cure and is marked by tremors, slow movements and difficulty with balance. Exercise, including singing, may slow the disease's progression, doctors say.

"The idea of being in a singing group might have a beneficial effect on their illness," said Dr. Richard Rosenbaum, who directs the Providence Center for Parkinson's Disease in Portland. "For a person who likes to sing, I would encourage this kind of activity. It's a great way to get their voice exercise."

A 2001 University of Kansas study examined the effects of singing on Parkinson's patients and found "significant increases" in speech intelligibility and vocal intensity.

Rosenbaum has written a 2006 book about the disease, "Understanding Parkinson's Disease. A Personal and Professional View." The disease afflicted his father, Portland doctor Edward E. Rosenbaum. (Edward Rosenbaum also battled cancer and wrote his own book about that, 1991's "A Taste of My Own Medicine," which became a well-known film, "The Doctor," starring William Hurt.)

Singing in a group has social benefits, too, reducing the isolation of disease. For example, who can sing "Many mumbling mice making merry music in the moonlight" with a straight face? Not this group.

"Music is a wonderful medium for bringing people together," said Jodi Winnwalker, a local music therapist who founded the choir in 2010 in collaboration with the Parkinson's Resources of Oregon, based on a national model. Winnwalker and the Alzheimer's Association Oregon Chapter also formed a Portland choir for people with early-onset Alzheimer's disease and dementia.

"The whole focus of these choirs is to support all of us," Winnwalker said. "Socially, cognitively, emotionally, I want them to be engaged in normal pursuits of living: 'These are the joys I can experience now.'"

The benefits of singing may linger beyond choir practice, Richard Rosenbaum said. "We don't have proof of that, but optimistically, that might be the case," he said.

Lucien Burke, 71, and Chuck Spencer, 78, agree. They sit in the front row and crack jokes about fading brain cells and getting nervous for a June 7 performance -- the group's first-ever public appearance.

"Singing is helping," says Burke, a retired diagnostic radiologist who learned he had Parkinson's in 1999. "I'm more aware of my voice and lungs and breath-holding. I need to work on that. We're students of this disease."

Spencer, a retired insurance premium auditor living in King City, is no newcomer to singing. Diagnosed with the disease in 2001, he met his wife, Norma, in a choir in junior high school. Norma sits next to Chuck and sings, too.

"We see it as an extension of our Parkinson's family," Chuck Spencer says.

"He looks very much forward to it," Norma Spencer says. "He's made friends with others in the choir. It's a joy."

Spencer has been "on a plateau" with the disease for four years, he says, and yet he hasn't lost his sense of humor. "My wife won't let me watch '60 Minutes' because it takes me two hours," he cracks.

But no one needs extra time when Elliott, the choir leader, picks up a guitar and slowly strums the sad, sweet chords to "Tennessee Waltz." The singers know the words by heart, and their voices are gently uplifting.

But persuading them to perform in public took some doing, Winnwalker said. "Each term, I'd bring it up, and they'd say, 'No way.' So I invited other choirs so it wasn't all about them. It's about everyone."

Burke's tremor increases under stress, he says, and he predicts he'll be nervous for the concert. He says, smiling: "I'll be in the back row."

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