By Minali Nigam
Imagine someone’s speaking to you, but you can’t respond. The words are trapped in your head, and what you say isn’t what you really mean.
That’s the reality for people with aphasia, a communication disorder caused by injury on the left side of the brain, in the area responsible for our ability to speak, write and comprehend language.
But aphasia patients and members of Triangle Aphasia Project (TAP) did lots of communicating Wednesday at the General Assembly, where they advocated for the need for long-term therapy and promoted new legislative policy on aphasia therapy.
People can have many different types of aphasia, which most often results from a stroke or a traumatic brain injury, said Adam Jacks, associate professor of speech and hearing science at UNC-Chapel Hill’s School of Medicine.
“I couldn’t get my words out and it was so frustrating at the time,” said Shawn Fleck, a TAP board member whose aphasia followed a stroke three years ago.
Bridging the communication gap
TAP, founded in 2003, provides community support and training programs for people with aphasia and their families.
“The National Aphasia Association says 92 percent of people with aphasia become socially isolated. I decided that wasn’t right,” TAP founder Maura Silverman said.
TAP serves more than 250 people, ranging in age from 18 to 90, and hosts a variety of programs including garden groups, book clubs, and music nights.
But six years ago, the professional became personal for Silverman when her mom had a stroke, which caused aphasia and right-sided weakness.
One consistent challenge for her mother, she said, was communicating with her medical-care team.
“My mom was almost about to get a [feeding] tube because she said yes when she meant to say no,” Silverman said.
Since then, Silverman has found creative ways to help her mom. She made a labeling system for her pills and organized her closet. Now, her mother can tell nursing aides what medications she needs and which clothes she wants to wear, all by pointing to a picture.
Doctors and nurses, Silverman said, should also be trained to help fill these communication gaps.
“Medical professionals may know about stroke and they may know about aphasia,” Jacks said. “But speaking to someone with aphasia is not like talking to anybody. You have to have some strategies.”
Outside the box
And these new strategies start with therapy.
“When I was first a nurse, we believed that there was a discrete window in which your speech could improve,” said state Rep. Gale Adcock (D-Cary), who’s been a nurse practitioner for more than 40 years. She was TAP’s host at the legislature.
“But what we realize now is that you can continue to improve over time. There’s not an exact endpoint.”
Recognition of the need for longer therapy has resulted from a better understanding of neuroplasticity, or the brain’s ability to reorganize itself. Silverman says traditional therapy, or working one on one with a patient, limits this ability to form new neural connections, because caregivers aren’t trained and often try to fill in or guess what the patient tries to say.
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“When you’re trying to come up with the name of something and you’re going towards where the [brain] damage is, you have to find a new route to get the word,” Silverman said. “If you don’t allow someone to form that new pathway, then it’s kind of like a road that’s not going to be used. You need multiple connections on that new pathway for it to stick.”
Silverman created a long-term therapy technique called the Communications Support Team, composed of family members, friends, and volunteers, to help each participant with aphasia.
For Austin Harrell, this means friends and members of his church community work with him on a day-to-day basis, for an hour at a time, to improve his communication.
In July 2013, Harrell was excited about attending Liberty University and hoping to play soccer there. While working out, he suffered a massive stroke which resulted in aphasia. He was 18.
Harrell, 21, enjoys sports and running. Last spring he enrolled in two online courses, computer science and American history, at Liberty.
“I got an A,” he said proudly.
Silverman said this community-based therapy doesn’t replace traditional therapy. Instead it provides a person with aphasia with ongoing stimulation for speaking, reading, and writing — input that can help make the most of neuroplasticity.
When Thomas Costello had a stroke three years ago, at 62, he and his wife, Donna Costello, both suffered initially.
“It makes communication very difficult,” Donna Costello said. “What’s the context? I have no clue what it is.”
They’ve worked together to figure out ways to better understand each other.
“He can sometimes say words, but then we have to use paper and gestures,” she said.
What’s the hardest part about having aphasia?
“Friends,” said Thomas Costello, who according to his wife, used to be in business development and is an outgoing person.
“He only has one friend that still comes around. That’s a big loss,” Donna Costello said, “But TAP has really filled a big void because he’s now around other people who have the same issues. He’s improved so much since he had the stroke.”
Insurance often doesn’t cover the number of therapy sessions needed for full recovery, Silverman said. In addition, Medicaid often combines occupational and speech therapy, forcing patients to choose which recovery skills to learn.
“Do you want to brush your teeth yourself or do you want to communicate?” Silverman asked.
Even with these challenges, people with aphasia can integrate back into their typical lives. Next week, Roy Gibbs, a TAP client, will start work again as an IT strategist.
Gibbs suffered a stroke a year and a half ago. He attended TAP’s book clubs and read there to improve his speech.
“I thought that it was only going to be a couple of months, and I’ll be back,” Gibbs said. “But it’s taken much more time.”