220407ind Aphasia

Anita Anderson, Lee-Ann Hurtubise, Denise Lowell, Dee Pelletier and Dr. Donald Cunnigen are shown performing as part of the Aphasia Clefs, a choir started by the Kingston-based Hands in Harmony music therapy center to help those battling aphasia, a disease that affects a person’s ability to communicate with others.

KINGSTON, R.I. — Hands in Harmony music therapy center has been helping people with aphasia long before Hollywood actor Bruce Willis put the disease on center stage recently.

Called the Aphasia Clefs singing group, it started at Hands in Harmony three years ago for those afflicted with this disease that inhibits communication with others.

For an hour or more each week, people with the disease find not only harmony, but company with others also living with its difficulties.

“I started the group after spending months lonely and bored once I came out of a stroke-induced coma,” said Donald Cunnigen, who has the disease and encouraged the center in 2019 to start the singing group.

“As a former professional sociologist who devoted study to all types of social interaction, I decided all stroke survivors needed some healthy social outlet providing such interaction,” he told The Independent this week.

About one million people in the United States currently had aphasia, which disrupts the ability to speak, read and write, according to national studies.


The Disease

Aphasia is a constellation of symptoms that make it difficult or impossible to express or comprehend language. It stems from damage to the parts of the brain that are responsible for language functions, which are typically housed on the left side of the brain.

Aphasia can be devastating for patients, disrupting their ability to take part in everyday life.

Aphasia stems from neurological changes in the brain. Strokes resulting in brain damage are the number-one cause, Dr. Shazam Hussain, director of the Cerebrovascular Center at Cleveland Clinic in Ohio, told The New York Times recently.

However, it can also be caused by degenerative conditions like dementia and Alzheimer’s disease.

The National Institute on Deafness and Other Communication Disorders noted that other triggers include brain injuries, including from severe blows to the head; brain tumors; gunshot wounds and brain infections.

“Our group members are impacted by many varying types of Aphasia.  Each has their own personal journey and story reflective of their own experiences,” said Nicole O’Malley, executive director and neurologic music therapist at Hands in Harmony.

“We welcome Bruce Willis to join the Aphasia Clefs virtual group!” she added with a laugh.  

O’Malley said that the center’s Aphasia Clefs choir is designed specifically for individuals who have aphasia as a result of a stroke or traumatic brain injury and uses neurologic music therapy interventions to accomplish non-music goals.

The group is free for participants and their families or caregivers and occurs at the Hands in Harmony clinic in Kingston.

“Dr. Cunnigen sought out resources and was able to receive a small grant to commence the group for six weeks,” she said. It brought assistance to help patients to enhance their breathing, speech, and memory, while increasing social engagement and establishing community support.

Cunnigen explained that some of his speech-music therapists at the clef’s weekly rehearsals have helped him and others by maintaining melodic singing of lyric phrases in a song — helpful in developing a “normal” rhythmic cadence pattern in daily speech- as well as acquiring a bit of vocal prosody and gaining greater breath control.

There are a number of different kinds of aphasia. Expressive aphasia brings difficulties with speaking in complete sentences, remembering words for various objects and hesitation when seeking he right words.

Receptive aphasia brings intense confusion when listening to others and taking to people while global aphasia basically stops nearly all forms of communication such as speaking, understanding, reading and writing.


Community Support

O’Malley said that the community support is especially important because it helps those affected overcome any perceived social stigma associated with being unable to communicate in everyday ways they once did.

“It is common to stigmatize cognitive skills of individuals who have been diagnosed with Aphasia when in fact, their cognitive abilities remain fully intact,” she pointed out.

O’Malley said that the Aphasia Clefs is primarily comprised of individuals from RI, but a move to virtual performances and practices during the pandemic brought others Connecticut, Massachusetts, India and Mumbai.

Hands in Harmony recently applied for grant funds from the Rhode Island State Council on the Arts. It wants to develop partnerships and funding options to help expand the Aphasia Clefs to a hybrid group model of virtual and in person, she said.

The pandemic highlighted, O’Malley said, the already significant health disparity for Black and Indigenous People of Color showing a significant increase in adverse behavioral health symptoms in when compared to white counterparts.

“Hands in Harmony seeks to expand our impact on those diagnosed with Aphasia to target and include underserved populations with limited access to treatment options,” she explained.

“The expansion of the group will promote equitable access to music therapy across cultures while building local and virtual communities to decrease social stigmas associated with Aphasia internationally,” she said. 

Write to Bill Seymour, freelance writer covering news and feature stories, at independent.southcountylife@gmail.com.

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