Being in tune is their therapy

 December 15, 2016  By Sophie Hagen

A DUET: Michele Keir and Janet Morrison are co-founders of the newly formed singing group of patients with Parkinson’s.

Rhode Island artist and designer Michele Keir has spent years singing in choruses. After being diagnosed with Parkinson’s disease, she tried running a singing group for others with Parkinson’s: it fell apart for “lack of participation.” “People got sick,” she says. For years, Keir didn’t try to start another one. But when she crossed paths with Mary Akroyd, whose boyfriend has Parkinson’s, at an art workshop for Parkinson’s patients at Kent Hospital, the two discussed how useful a musical group would be to address symptoms and isolation caused by the illness. A new group was born.

Akroyd, Keir says, takes a dynamic approach to the group, explaining basic musical concepts to those who don’t read music and bringing a sense of fun and camaraderie to what is also an effective therapeutic technique. Akroyd, a retired music teacher, has been a church organist, musical director, and composer for 25 years. She uses the educational resources she’s accumulated over the years to develop exercises for the group, emphasizing dynamics in order to coach softer voices to be louder, and “silly children’s songs,” like “Bibbidi Bobbidi Boo” from Cinderella, to help with pronunciation. Uplifting songs like “Climb Every Mountain” remind the participants that they’re not alone in coping with the disease. Choreography, including arm and body movements that mimic the direction of the melody, helps combat the onset of stiffness.

This work provides potentially vital reinforcement for a set of therapies necessary for those with Parkinson’s disease. Those with Parkinson’s perceive sounds to be louder than they are, which often causes them to speak quietly. The Rhode Island branch of the American Parkinson Disease Association particularly advocates that patients undertake LSVT (Lee Silverman Voice Training) therapy, and specifically a program called LOUD. The therapy requires one hour of work a day, four days a week, for four weeks, and can return the patient to “normal loudness,” as long as they continue to do their exercises.

The self-proclaimed “cruise director on the Love Boat of Parkinson’s,” Mary Ellen Thibodeau is information and referral coordinator at Kent Hospital’s Parkinson’s Center. Her work is funded by the APDA and covers Rhode Island and Southeast Massachusetts. She explains that the singing group can help those who have gone through LOUD to practice the techniques they’ve learned. LOUD includes work with swallowing and facial expressions, as Parkinson’s patients have trouble controlling both.

“I imagine,” said Thibodeau, “that singing would help with that too.”

While the Rhode Island APDA does not run the singing group, which has now met twice and has eight members, it has notified its members about it and publicizes it on its website. The chapter, with 2,400 members, runs 17 support groups; a few more are due to start soon. Thibodeau also manages a hotline; during the holidays, she says, that line will be ringing off the hook.

“Usually at this time of year, some well-meaning relative has told [patients] something horrific about Parkinson’s. I reassure them that what they found on the Internet or what Uncle Joe said is not true.”

There are also three Rhode Island providers of Rock Steady Boxing, a national program for Parkinson’s patients, including Fight2Fitness, a boxing gym in Pawtucket run by New England light heavyweight champion Rich Gingras.

 Rhode Island’s Parkinson’s community, Thibodeau said, “is extremely active and extremely knowledgeable; you can go to any support group and the patients are brimming with information.” In addition to providing as much information as possible, the chapter works to provide opportunities for socializing to people with Parkinson’s who, Thibodeau says, tend to self-isolate, “particularly if they have voice issues or face issues.” More than extra practice with their vocal exercises, then, the singing group gives patients the comfort of community – a chance to see that they are not alone.

The group may encourage other development as well. “Creativity,” reports Keir, “gets enhanced with Parkinson’s.” Thibodeau has not seen research to substantiate this, but reports anecdotally that those with Parkinson’s “seem to get more creative,” embarking on visual art and musical projects. “Patients appear to have an increased interest in the arts” once they’ve been diagnosed, she says.

Akroyd, the group’s teacher, says she’s learning as she goes and enjoying the experience thoroughly. The participants have reported a more positive outlook following group meetings. One exclaimed to Akroyd that the singing was “a lot more fun than the loud exercises!”

The group is currently honing its holiday repertoire for a large group sing-along at Kent Hospital on December 17. Its services may soon be in high demand. Evergreen Nursing Home in East Providence has, according to Keir, requested a performance by the group. While the group’s activities focus on those with Parkinson’s, it is open to all.

The group’s next meeting will be held on December 15 from 1 to 3 p.m. at Oaklawn Community Baptist Church (229 Wilbur Avenue, Cranston). Participants should be advised that there are several steps down to the choir room.

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