Voices, spirits lift in face of Parkinson’s steady toll
Gilbert Aliber spent most of his years at the center of the stream of life. He ran a community mental health center in Vermont, served on local and national boards. He retired to the Boston area because his grandchildren were here, and “I wanted to grow up with them.”
About eight years ago, he was diagnosed with Parkinson’s disease. Now, his hands shake, and he leans on a cane for support. His voice is softer; it is harder for him to speak.
But last week found the 82-year-old preparing to sing before a crowd of 900 at Old South Church in Copley Square. The Tremble Clefs, a chorus for people with Parkinson’s and their care partners, were going to guest star in the Back Bay Chorale’s sold-out Christmas concert.
“I feel like a kid,” Aliber said. “I never could have imagined myself singing in that splendid church.”
It was the culmination of a season of collaboration between two very different choral groups: The Back Bay Chorale, a 110-member chorus that performs large-scale classical works — Bach, Verdi, Mozart — and the Tremble Clefs, who number about three dozen and love to sing show tunes.
The Tremble Clefs sing to fight the voice-dampening effects of an incurable disease. As their tongue-in-cheek name suggests, they come to their Monday morning rehearsals with a sanguine sensibility, belting out old favorites from “Fiddler on the Roof,” “Les Miserables,” and “The King and I.”
“It gives everybody a big lift to face the week ahead,” Aliber said.
The two groups met because of a question the Back Bay Chorale’s members began to ask themselves a couple of years ago: What could they give to the community? They formed an outreach effort called Bridges and sent smaller groups to sing at homes for people with memory loss. But when chorale member Janet Selcer learned about a singing group for people with Parkinson’s, the conductor of the chorale, Scott Allen Jarrett, wondered whether they could try performing together.
Jarrett met with the leaders of the Tremble Clefs, and was moved by what they told him.
“This was a community of people who were . . . previously vibrant contributors to their daily world,” he said. “Little by little and day by day, the disease eats away at their perceptions of relevancy and inclusion.”
Incorporating the Tremble Clefs into the Christmas concert made sense to Jarrett.
“Yes, it’s a season of giving, but it’s also a season of finding our common humanity, making those deeper connections with others,” he said.
Parkinson’s, which affects about 1 percent of people over age 65, is a neurodegenerative disease affecting the brain’s production of dopamine, a chemical that helps regulate movement. Treatment can improve symptoms, but there is no cure. It commonly causes tremors, stiffness, and walking difficulties, as well as depression and anxiety. And it can wreak havoc on the voice, causing slurred or faint speech.
“You lose your ability to talk to your grandchildren on the phone — really to socialize,” said Marilyn Okonow, whose father-in-law had Parkinson’s. A decade ago, she and her husband donated seed money to Jewish Family & Children’s Service of Greater Boston to create support programs for Parkinson’s patients and their care partners.
Nancy Mazonson, who directs the support programs, started Tremble Clefs after reading about a similar chorus in Texas that had injected elements of voice therapy for Parkinson’s patients into choral singing.
Okonow, a music educator by training, eventually became the chorus’s director. She worked with Massachusetts General Hospital speech therapists to incorporate some of their strategies into rehearsals.
The group meets every Monday morning at the United Parish of Auburndale in Newton. Many of the Tremble Clefs expend enormous energy getting there — some use wheelchairs, many can no longer drive. They show up in rain, snow, ice. Priscilla Elliott once spirited her husband, Clark, from the hospital, with an understanding doctor’s permission, for two hours to sing at a Tremble Clefs spring concert. She knew he needed it like medicine.
“He’s in the lobby, visiting his friends,” she whispered to Okonow when they arrived, tucking his hospital bracelet into his sleeve.
Rehearsals typically begin with a warm-up that includes belly laughing to engage the diaphragm.
“I’ve never seen it not turn into genuine laughter,” said Peter Bleiberg, a member.
And then they sing. Broadway musicals are a staple; this fall, the focus was music from “Camelot.” Sometimes, there is Cole Porter. Sometimes, there is Pete Seeger.
Lois Liss and her husband, Robert, who has Parkinson’s, joined earlier this fall. Now, they sing with each other all week long.
“After 54 years of marriage, you get stuck in your ways,” she said. “This is something new and different. He said, ‘I didn’t know you could sing.’ ”
The Tremble Clefs are nonsectarian, but their roots in a Jewish community organization gave Mazonson and Okonow a moment of pause about participating in a Christmas concert. They decided, though, the experience for members and the publicity for the group were impossible to pass up.
Back in October, a handful of Back Bay Chorale members began attending the Tremble Clefs’ rehearsals every week, and together they began preparing two numbers for the concert. Jarrett taught them the melody to “This Christmastide (Jessye’s Carol).” And the Tremble Clefs taught the chorale members the song that has become their anthem: “Oh Guide My Steps,” by Jewish contemporary songwriters Debra Winston and Julie Silver.
“What we found was that it was tremendous fun,” said Selcer of the Back Bay Chorale.
Back Bay Chorale chorister Joe Reid, who wrote about the group’s experiences with the Tremble Clefs for the chorale’s newsletter, was taken aback when one of the Tremble Clefs singers stumbled into him. The man recovered and carried on with equanimity.
“It makes you think, ‘This can happen to me,’ ” Reid said. “And if this happens to me, I want to know someone is out there who will sing with me.”
The Tremble Clefs, for their part, loved how they sounded with the chorale singers among them: stronger, fuller, richer.
“It’s what society should be about,” Aliber said. “With Parkinson’s you get ostracized, pushed off to the side. They came in, and we were mainstreamed right with them.”
Last Sunday afternoon, the Tremble Clefs assembled in the first few pews at Old South. They marveled at the beauty of the old church, and at the lustrous sounds of the Back Bay Chorale warming up, supplemented by the Lexington High School Concert Chorus, a brass ensemble, organ, and percussion.
When it was the Tremble Clefs’ turn to sing, the seven Back Bay Chorale members who had rehearsed with them throughout the fall joined them at the front of the church. The simple melody rose, quiet and plaintive at first: “Oh guide my steps, and help me find my way . . .”
Jarrett invited the audience and the chorale to join, and as the music crescendoed and the sanctuary swelled with music, the sopranos sang a soaring descant: “And spread forever over me your peace and love.”
Afterward, Aliber’s face was alight. “It was wonderful," he said.