Raleigh, N.C. — Advocates for people with aphasia came to the legislature Wednesday to raise awareness of the disorder, as Gov. Pat McCrory proclaimed June Aphasia Awareness Month.
Aphasia is a disorder that affects people’s ability to speak, hear, read, write or some combination of those. It’s most often caused by stroke, brain injury or tumors, although some cases are an early stage of a progressive disease, like that announced last week by longtime University of North Carolina at Chapel Hill sportcaster Woody Durham.
People with aphasia know what they want to say, said Rep. Gale Adcock, D-Wake, but can’t put the words together to say it.
"Imagine seeing words on a page that you can't put together as recognizable words and sentences," Adcock added. "We can all relate to the devastation we would feel if robbed of our ability to communicate verbally with others."
Triangle Aphasia Project director Maura Silverman said around a third of all strokes cause aphasia. Some 2 million Americans are expected to be affected by it by 2020. Her group, founded in 2003, serves more than 250 people in the Triangle.
Silverman says 92 percent of people with aphasia become socially isolated because of their difficulty in communicating with friends and family. She says most insurance policies don't cover enough speech therapy to allow them to recover fully. Her group helps people with aphasia regain their language skills and even go back to work.
She says they know everything they knew before, but their halting speech makes people think they’re mentally impaired.
"The more that people know about aphasia – these opportunities to spread awareness is what levels the playing field for people with aphasia, because then they can go back to work and nobody’s questioning their competence," Silverman said. "They’re really realizing that your linguistic ability does not represent your cognitive competence."
Roy Gibbs, an IT architect, went back to work recently after a stroke at age 65. He said his job requires him to be able to communicate, and he credited TAP with helping him regain the skills and the confidence to return to the workplace.
"I can remember all of the stuff that I once knew," Gibbs said slowly.
Silverman said her group works with families, friends, and even faith-based groups to form teams to work with the patient and provide the needed stimulation. They also have book clubs and a gardening club, as well as speech therapy meetings.
She says advances in neural research over the past 10 to 15 years have shown that the brain is far more flexible than previously thought, and can be retrained over time.
"You can continue to get better," she said, "as long as you want to."