Maura English Silverman was an undergraduate when she saw her future life’s work reflected in the eyes of a man she knew from her home town.
She was visiting a speech pathology session, and recognized the man, a restaurant owner who had disappeared from public life. Silverman says she could see that, whatever his struggles with communicating, his mind was intact.
“I remember looking at his eyes and thinking that he knows what he wants to say,” says Silverman. “He just can’t get it out. And he’s embarrassed.”
The moment launched Silverman into a career focused on helping people who suffer from aphasia, a condition in which a person’s language abilities are diminished, even as the mental capacity remains intact.
Silverman worked for years at clinics and hospitals across the country as a speech pathologist, learning more about aphasia from some of the few programs that focused on the disorder.
In 2003, she pieced together the best of the approaches she’d seen to found the Triangle Aphasia Project Unlimited, or TAP, a nonprofit that helps people who suffer from aphasia due to stroke or brain injuries regain their former lives.
It’s one of just a handful of such centers in the country, and provides a service for people whose aphasia continues after the trauma that caused it is over.
Aphasia affects close to 2 million people nationwide, yet remains little-known. June is Aphasia Awareness Month, and TAP will be holding a fundraiser with a beach music band and other events.
Elaine Rohlik, executive director of rehab and trauma services at WakeMed, says Silverman is among the nation’s top aphasia advocates, a “community gem” who has brought in top researchers to the Triangle and is always devising creative ways to help people with aphasia to improve their language skills and lives.
“It’s very hard to get out and be active when you don’t have the ability to communicate effectively,” says Rohlik. “TAP is a bridge or avenue for people who have aphasia to still be able to participate in all the things they enjoy in life rather than becoming isolated.”
Overturned file cabinet
To understand aphasia, imagine all the words in your brain tucked into filing cabinets organized by their meanings and associations. Now picture those file cabinets overturned, with all the words impossibly jumbled. They may still be there, but finding them is a challenge.
Aphasia affects people’s ability to read, write and follow conversations, but is most evident in difficulty speaking. Some may simply pause before speaking, while others are completely non-verbal. Many find it easier to withdraw than to suffer through the frustration and embarrassment of trying to speak.
Aphasia often stems from strokes or brain injuries, and is typically treated along with other therapy. But only a few groups nationwide focus specifically on helping aphasia patients in the long term. Silverman uses what she calls the “life participation approach,” which entails helping each individual get back to whatever activities the person used to do.
“When you can’t communicate your thoughts even though your thoughts are intact, it creates this barrier to relationships,” says Silverman. “Traditional therapy helps them retrieve the words from the messed up filing cabinet, but you also have to teach them how to interact with their world again.”
Silverman, who was raised in upstate New York, was studying psychology when she first heard of the disorder. She was working with hearing-impaired children and looking to change the focus of her studies when she ran into a friend who was a speech pathologist.
The friend brought her to a therapy session, where she recognized a well-known restaurant owner whose expression helped change her path.
She changed her major to speech pathology, and went on to work in several different states, following her first husband’s job in the restaurant business. As luck would have it, she worked at several clinics and hospitals with strong programs for aphasia in Iowa, Wisconsin, Atlanta and elsewhere.
All along she was building her idea for the ideal aphasia center, and when she landed back at Duke Medical Center, she started by creating a program there focused on aphasia.
Silverman says her second husband, a physician’s assistant whom she met when he worked at Duke Medicine’s Brain Tumor Center, encouraged her to quit her job and start TAP. She doesn’t take a salary as its director, but does have a small private practice.
‘She changed my life’
Part of Silverman’s approach is an insistence that her patients continually work on their skills, getting out into their community as well as attending sessions at the group’s center in Cary.
That insistence extends to her own mother, who developed aphasia after a 2009 stroke.
“I know her well enough that I know what she wants to say, but I still make her work to say it,” says Silverman. “The brain can rewire over time. You’re never done improving until you say you’re done.”
TAP is funded largely by donations, and about half of the therapists who work with patients are volunteers. Patients pay about $5 for a therapy session using punch cards, or $10 for a full day of music therapy, writing and language work, as well as a group discussion led by speech pathologists.
Silverman and the other therapists she works with evaluate each client individually to help them fit back into their usual roles.
For local radio personality Bob Dumas, that meant helping him read commercials by breaking them into smaller pieces of text, and having his children hold up pictures of fruits and vegetables for him to name.
Dumas credits Silverman with getting him back on the airwaves after a brain tumor and a later stroke robbed him of his speech.
“She changed my life,” says Dumas. “It’s so frustrating, but she won’t let you feel withdrawn. She says to get out and go talk. That’s the only way you’re going to get better.”
Over the years, the program has added reading clubs, and is working on building a gardening club.
One of her latest programs works by recruiting a patient’s friends and family to help in their recovery. Called a community support team, a group of people from all of someone’s social outlets – church, clubs, school, family and so on – is trained to work with the patient on a daily basis.
She has also helped create and is working to market a video puppet show that helps children understand how to interact with a family member who has aphasia.
“People want to help,” she says. “This allows them to have a role.”
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Maura English Silverman
Born: July 1965, Binghamton, N.Y.
Career: Founder and director, Triangle Aphasia Project Unlimited
Awards: Health Care Hero, Triangle Business Journal, 2008; Student and Community Champion, Speech Language and Hearing Clinic, N.C. Central University, 2009 (for her and her organization)
Education: B.S. communication disorders, Marywood College; M.S. speech pathology, Ithaca College
Family: Husband Steve; sons Matthew, Ryan, Austin and Zachary
If you go: The Triangle Aphasia Project Unlimited annual concert is Friday. This year’s event is a “Beach Ball” featuring beach music and dancing, a silent auction and more. Buy tickets or learn more at aphasiaproject.org.
Noteworthy: Perhaps the most famous case of aphasia currently is that of Gabrielle Giffords, the former U.S. representative from Arizona whose condition was caused by a gunshot wound to the head.