By Leah Asmelash
Fifteen years ago, Maura Silverman was a frustrated speech therapist watching patients with aphasia get discharged from services before they were ready. Insurance companies made the call, leaving her with little say in the matter.
So Silverman took matters into her own hands and founded the Triangle Aphasia Project, an organization dedicated to serving people with aphasia.
Aphasia is a communication disorder most often caused by a stroke. People with the condition may experience difficulties in speaking, understanding language, reading, writing or any combination. They may use words incorrectly, for example, saying “mother” when they really mean “month,” or “laces” when they mean “elementary.”
Those difficulties can lead to a lot of frustration – it’s not that someone with aphasia can’t think straight, they just can’t use words straight.
Ninety-two percent of people with aphasia consider themselves socially isolated, and 70 percent never return to work or recreational activities. This may lead to other problems, such as depression, and even another stroke, Silverman said.
“That’s not okay,” Silverman said. “We are out to change those statistics.”
That’s what Silverman tries to do with TAP. Through book clubs, dinner meet-ups and other activities, the volunteers and people at TAP work to re-engage people with aphasia into the activities they enjoyed before their strokes.
Health care coverage has changed in recent years. Often insurance plans don’t cover as many therapy visits, including speech therapy services. That’s happening at the same time that neurological researchers are realizing that brains are more flexible than once believed. The brain can bounce back from injury.
Patients initially improve quickly, aided by those therapy visits. But long-term restoration has a lengthy timeline with slow, steady improvement.
That’s where TAP comes in. Silverman said the need for the program has become greater because insurance has stopped paying for therapy. Most people can’t afford to continue paying out of pocket, so TAP eases people away from therapy into longer term recovery.
Better every year
Jack Mullen was a dentist before his stroke in 2008 and has been doing rehabilitation with Silverman and TAP for the nine years since. He takes long pauses every few words, but talks and communicates well.
When Mullen started with Silverman, he said he couldn’t get his brain going.
“The first year I was paralyzed – quite a time,” he said. “Didn’t know anybody, but turns out, it was one of the best things that ever happened to me.”
Before his stroke, Mullen said he was self-centered, but became more interested in others and less in himself as a result of his aphasia.
His wife, Judy Mullen, said their time after his stroke has been an adventure with many challenges, but it was like she got a new husband.
“Before, he was driven, sometimes harsh, and not easy to get along with,” she said. “Now, I tell him he’s a kinder, gentler man.”
Fortunately for the Mullens, Judy comes from a nursing background. She knew what aphasia was and her medical training has made it easier for her to help her husband than it might be for someone without that training.
That doesn’t change the fact that the Mullens’ life is different now.
“We’re together 24/7,” Judy Mullen said. “I feel responsible for where he is and what is happening, to see that he is safe, and he is able to communicate as well as he can with our friends and family.”
Jack Mullen said he gets better every year. Now, he can read and communicate. He credits Silverman with giving him the opportunity to sit down and relate with a group.
“I feel like I’m probably 99 percent, brain-wise, to where I was prior to the stroke,” he said.
Joseph Propst was an attorney before his stroke and has been with TAP for a year and a half. He communicates well, but sometimes gets his words mixed up.
“At some point, not right now, I’m going back to my office,” he said, and Jack Mullen agreed.
“I think there’s no doubt about it in my mind that you will,” Mullen told Propst.
“I picture myself, where I was a year and a half out, and I think he’s doing extremely well,” Mullen said.