Dorene Lopez, center, sings during the first performance of CSUEB's aphasia choir, the only chorus of its kind in the Bay Area. (Photo: Jesse Cantley)
As well-wishers bearing bouquets filed into a rehearsal room in the Music Building on a chill December afternoon, 14 choir members dressed in red-and-black had already taken their seats, preparing to warm the hall with their first performance.
A diverse group of men and women who once worked in professions including rock musician and in-home caregiver and ranging in age from 40s to 80s, choir members share one common trait: Each is a client of the Aphasia Treatment Program offered by Cal State East Bay’s Department of Communication Sciences and Disorders. Most commonly caused by a stroke, asphasia is a disorder that impairs a person’s ability to communicate but doesn’t affect intelligence.
“Through the choir, people have talked about the power and magic of music,” said Ellen Bernstein-Ellis, director of the Aphasia Treatment Program and founder of the choir –– the only one of its kind in the Bay Area and one of a handful offered nationwide. “Maybe Ella Fitzgerald said it best: The only thing better than singing is singing some more. So without further ado, may I introduce to you the choir.”
Following the welcoming remarks, graduate student and Choir Musical Director Michelle Lussier steps to the music stand set up before the group. At her signal, they launch into a series of familiar tunes including holiday standards, Motown favorites and pop hits such as Ben E. King’s “Stand By Me.”
“No, I won’t be afraid, no, I won’t be afraid/Just as long as you stand, stand by me …” choir members sang in unison.
Despite difficulty communicating, research has shown that music and singing can help those with aphasia access language in a way they can’t through regular speech, explained Lussier, 40.
“There are a couple people in the group who can speak really only one word at a time but who can sing songs they know pretty fluently,” she said.
Steve Wright falls into this category. A one-time bassist and vocalist for the Greg Kihn Band, which enjoyed a series of pop hits in the 1980s, aphasia has left Wright with paralysis in his right hand and a speech pattern that often limits him to speaking a few short words in sequence.
“At first he was kind of quiet,” Bernstein-Ellis observed. “Over the course of the quarter, he’s found his voice and been allowed to sing out. He stopped me in the hall last week and said, `Wednesday, 3?’’’
He held up three fingers to indicate choir rehearsal time.
“Thank you,” he told her.
During the performance, Wright performed a duet using his left hand with pianist and music arranger Shiri Oren, a graduate student in the Department of Communication Sciences and Disorders.
“I had another (choir) member who told me it’s his favorite hour of the week,” said Bernstein-Ellis, referring to choir rehearsals.
Before the chorus met for the first of seven practice sessions, Lussier said she worried they’d feel uncomfortable performing in front of each other and an audience.
“From the first, they just launched in and sang,” she said. “It was amazing.”
Aphasia doesn’t affect everyone in the same way. One person may have good hearing comprehension but be unable to string full sentences together with ease. For another person, words may come easily but following a conversation proves challenging.
“It depends on where in the brain the stroke occurs,” Bernstein-Ellis said. “Aphasia has a lot of consequences, because language is how we connect with our community.”
Without adequate access to language, she adds, individuals with aphasia can become isolated and removed from community engagement. More common than Parkinson's disease, cerebral palsy or muscular dystrophy, about one in 250 Americans have aphasia.
“Returning to a meaningful life can be really limited if they don’t have support and services that can help assist in recovery and adjusting and adapting –– not just (for ) the client but (for) the family,” Bernstein-Ellis added.
The concept for the choir grew out of the existing Aphasia Treatment Program, a nine-week day program offered during fall, winter and spring quarters, that helps clients improve their speech, reading and speaking skills through one-on-one and group therapies. Socialization programs such as a book club and news discussion groups also engage clients and assist in helping them adapt to the effects of aphasia.
During the choir performance, it’s clear that members enjoy singing together. A fur-trimmed red Santa hat perched on her head, member Dorene Lopez can’t contain a broad smile as she sways to the rhythm of Christmas carols.
“We had a great (time),” said Lopez, 46, following the performance. “I’m so happy and glad we did. It’s in my heart. It was hard work. I’m having happy cries right now.”
While the experience has been enjoyable for choir members and the graduate students who have led the practice sessions, students are also gaining valuable clinical experience. Throughout the project, Lussier and her classmates have adapted materials such as songbooks to the needs of their clients by making them aphasia-friendly. Lyrics were printed in large type and songs were separated by colored tabs to make them easy to navigate. During the performance, for example, choir members were seated in pairs, allowing them to assist each other as needed.
“While we’re having a tremendous amount of fun, (the students) have a responsibility to evaluate what we can do better and what we did well,” Ellis-Bernstein said.
Lussier, who had classical music training at a performing arts high school and as an undergraduate, plans to take the experience a step further by focusing future research on the therapeutic connection between aphasia and singing.
“I’ve heard changes in (their) speech, and I’ve heard more words,” she said. “ I want to measure it.
“I’m so curious. I just want to know so much more.”
Noting that few aphasia choirs exist nationwide, Lussier said little research has been done in the field, a gap she looks forward to filling.
“I don’t know who it’s been more amazing for this quarter – the students or the choir members,’’ Ellis-Bernstein said. “I can not compliment my students enough.”