People who lose the ability to talk because of stroke or other health problems can continue to improve through a lifetime, not just for the year or so conventional wisdom once dictated.
That’s the belief upon which Maura Silverman founded the Triangle Aphasia Project Unlimited 10 years ago. Now, both the organization and its core principles of community-based treatment are finding increasing acceptance.
Aphasia is defined as the inability to communicate that occurs when a person’s brain is damaged by strokes, tumors, dementia or injury. A person with aphasia may be thinking clearly, but be unable to express thoughts without training and extensive practice.
“People would be so long in the treatment process, that we wouldn’t see them until a year or two years post trauma,” Silverman said, referring to an approach that considered aphasia patients no longer able to improve after a year or 18 months of treatment.
“They were completely disengaged – they weren’t restarting their lives.”
Aphasia affects about a quarter of the 600,000 people who survive strokes nationally. Problems caused by aphasia can include devastating social isolation and disengagement from activities that define people. TAP Unlimited offers treatment and help with people who have aphasia, their families and the community, focusing on taking part in life activities and getting back in touch with people again.
Apex resident Hope Yarborough, 37, has dealt with aphasia since she received severe injuries in a car crash more than 10 years ago. During a telephone interview this week, Yarborough said she’s received enormous benefit through her treatment with the agency, which began more than three years after her accident.
“I see people and they have improved so much, and I have improved so much,” Yarborough, who stays at home to look after daughter Cassie, 3, said of her treatment and involvement with aphasia-group sessions. “It just keeps on coming.”
Yarborough continues to attend the TAP Unlimited book club and another group for high-functioning people with aphasia. Persisting through practice and treatment alongside people with the same problems creates a network of support that’s invaluable, she said: “There are other people like you there.”
Hundreds of other people in the Triangle are getting help with regaining speech from the program – at its headquarters in Cary; through its associations with Durham Regional, Rex and WakeMed hospitals; in area long-term care homes and in community support groups of friends that TAP can train for individuals.
“Patients we treat in the hospital for stroke, brain tumors and head injuries need these important, community-based support services,” Rex President David Strong said.
The hospital provides financial help to TAP Unlimited, as well as coordinating care for aphasia patients among its staff and the group’s speech therapists.
Once outside the mainstream of medical treatment for aphasia, the idea that family members and friends can successfully work with patients over the long term is gaining increasing acceptance, said Audrey L. Holland, a speech and hearing professor at the University of Arizona.
“The acceptance of aphasia groups and the need for such socialization, and planning for community re-entry and involvement is gaining a lot of traction among professionals,” Holland said. “It used to be a great divide between those who thought it rather ‘bleeding hearts’ and cute and those who did ‘real’ aphasia rehabilitation. This is an ever-narrowing gap, and that is a really good thing, in my view.”
Holland and Silverman are founding members of the Aphasia Alliance, made up of 16 centers across the country that use what’s called the “life participation approach to aphasia.”
Once, Silverman was among the pioneers of the idea that years of therapy, of group sessions, of family-and-friend assistance could help people with aphasia improve over the long term. Now she’s celebrating a new building and a decade of her program, as other professionals across the country also tune into the participatory methods.
“Maura is a leader and an innovator,” Holland said. “Her work is highly respected in the part of the aphasia world that already knows about the value of work like hers, but it is also growing, in the larger arena of clinical aphasiology.”