How Students Are Learning From Stroke Survivors
Aphasia Treatment Program marks 20 years of supporting patients, training clinicians
It was Jan. 1, 2006. To welcome the new year, 54-year-old Jay Schuster and his wife took a day trip to California’s gold country, a couple of hours from their home in Walnut Creek. They spent the afternoon in the Sierra foothills and stopped for dinner at a local restaurant on their way home. It was shortly thereafter that Schuster, a preschool educator, suffered a stroke and passed out, leading his wife to call 911. Responders from a nearby fire station quickly arrived.
Schuster, like nearly 90 percent of stroke survivors, experienced what’s called an ischemic stroke, resulting from a blood clot blocking blood supply to the brain. Although he was fortunate enough to receive medical attention quickly, including a lifesaving, clot-breaking treatment called tissue plasminogen activator, Schuster did not make the full recovery anticipated by doctors. He was left with a communication disorder called aphasia that impairs speaking and listening skills.
Still — he considers himself lucky.
“What’s important to me is, yes, I had a stroke,” Schuster says. “And yes, I’m frustrated and a stroke is a terrible thing. But from my point of view, I’ve never viewed it as a negative thing. Everything with me is the opposite of what you would think.”
It’s now spring 2017, and Schuster — who has high-functioning language skills — is sharing with his small therapy group in Cal State East Bay’s Aphasia Treatment Program why he almost missed the day’s session. As he begins telling how he locked his keys in his car, he pauses every so often to count off letters on his fingers in search of a particular word, or to try and write it down. If that doesn’t work, the story is suspended while the group helps him talk his way through related concepts, searching for the lost vocabulary.
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It’s a familiar scene among the aphasia clients, whose variety of stiff or frozen limbs, halting speech and comprehension problems are frequently mistaken in public for a lack of intelligence or mental stability — or worse, treated with fear.
“People think language is an expression of intelligence,” says graduate student Kemi Siobal, who leads one of ATP’s small therapy groups. “But it’s important to understand that while aphasia impacts language, it’s not a disorder of intelligence. The amount of expressiveness people with aphasia still have using limited words, gestures or facial expression is incredible.”
With stroke being the No. 1 cause of adult disability in the United States, the National Aphasia Association believes more than 2 million people in the U.S. live with the disorder.
Yet despite those numbers, there are just two dedicated treatment centers for aphasia in the Bay Area. The Department of Communicative Sciences and Disorders at Cal State East Bay is home to one of them.
“Individuals with aphasia have historically been an underserved group; it’s hard to advocate for services when your ability to communicate is limited,” says Ellen Bernstein-Ellis, director of ATP. “But the goal of Cal State East Bay’s Aphasia Treatment Program, which is run by students who are preparing to be speech-language pathologists, is to produce the best-trained clinicians possible so they can go out and care for more people affected by aphasia and other speech-language disorders — and we want our clients to be able to participate in life.”
What sets Cal State East Bay’s program apart from traditional outpatient programs is its focus on a particular type of group therapy. Not only was the group therapy model specifically designed by ATP founder Professor Emerita Jan Avent to serve the aphasia clients, but it replicates the shifting demands of clinical work for students, who get two full days per week of hands-on experience. Avent spearheaded the program 20 years ago — a milestone the clients are preparing to celebrate at an upcoming luncheon (see Join the Celebration!).
“At the time when the program started, [stroke] was the third-leading cause of death in America,” Avent says. “It just made sense to me that we needed to train our students [to treat more people]. And if you understand how to do group therapy, you can do it with patients with aphasia, with children, with people who stutter — it just translates across all the disorders that we [as speech pathologists] are charged to treat.”
Over time, Avent also realized that the benefits of group therapy far exceeded the value of simply being able to see more patients at once.
“The clients would come to [ATP] and just stop and look into this room full of people — their tribe — and they would stop cold because it’s the first time they’ve come into contact with someone else with aphasia,” Avent says. “As much as I know about therapy and as much as I can guide it and train the students and tell [the clients] what their life is going to look like … it’s nothing compared to what they can do for each other.”
The professor went on to develop (and write the book on) cooperative therapy for aphasia patients, which entails two patients working together and playing the role of each other’s clinician. While a graduate student oversees the pair and might write down words or help unstick difficulties, it’s the clients who are compelled to practice how they will navigate the world outside ATP.
“The recovery is a long road and many people will never get to where they were pre-stroke,” Siobal says. “But many of the clients couldn’t talk much for years and now are pretty successful communicators — and they love to share their stories of the progress they’ve made since starting ATP.”
While the aphasia clients come to Cal State East Bay to improve their communication skills and learn to better negotiate daily life, they’re also achieving something bigger than themselves: In the past two decades, they’ve helped to train more than 300 licensed speech-language pathologists who now serve as clinicians in the Bay Area and beyond.
“Our nationally honored Aphasia Treatment Program has long been recognized as an asset to our college — and our region,” says Kathleen Rountree, dean of the College of Letters, Arts and Social Sciences. “Its valuable contributions to innovative programming and research in aphasia, excellence in student training and determined commitment to providing much-needed services to our local community make a real difference, both here on campus and in the world outside.”
For proof of that — look no further than alumna Stacy Lee (M.S. ’10, Speech Language Pathology), who has been working at Fairmont Hospital in San Leandro since immediately after completing her graduate degree.
Lee, who is a treatment coordinator, works to evaluate patients, outline and develop treatment goals and implement individual treatment plans. She estimates that at least half, if not more of her patients, are dealing with aphasia.
“It’s definitely in high demand,” Lee says. “One of things I learned through ATP that I use in my job every day is the importance of getting to know the whole person — who they are, their family, their work, where they’ve traveled. Knowing that information and being able to put together that whole picture really helps tailor goals to what’s important to that patient, specifically.”
“There is a feeling of mutual respect and care that becomes ingrained in our students through the ATP training experience,” explains Shubha Kashinath, interim chair of the Department of Communicative Sciences and Disorders. “And it stays with them as they go on to become strong advocates and pioneers for change in their own communities and with the individuals they serve.”
And the hands-on aspect of ATP, which Lee confirms is one of the best parts of the program, is also why she loves seeing Cal State East Bay students walk through the doors at Fairmont.
“Being a graduate student/clinician — at the time, I was nervous,” Lee says. “There was one patient in particular, Randy, who helped me feel really comfortable and confident trying new things. After some time, I realized he was supporting me as much as I was supporting him. And that’s what’s special about ATP — this culture of everyone helping everyone. In my position now, we take on a lot of interns from Cal State East Bay and they have more experience with adult patients and neuro-disorders than students from other schools. And even if they don’t have hands-on practice with something, they know how to do research and how to approach new therapy methods. They come in with a lot of preparation.”
Since its inception, ATP has won numerous accolades, including being named the 2017 California State Speech Hearing Program of the Year; contributed to broad-scale advocacy and awareness efforts; and produced an award-winning choir.
But it’s a near-intangible sense of care and community taking place between ATP’s clients and Cal State East Bay students that is at the heart of the program’s success.
“The young students who are learning speech therapy — I tell them all the time, you are very lucky,” Schuster says. “What you’re doing is the most wonderful thing you could be. I found my home, right here. This group, these teachers, these wonderful [students], it’s a loving, loving place. It’s probably the most loving place I’ve ever had in my whole life.”
The feeling is mutual.
“A quarter is a short amount of time in a client’s journey,” Siobal says, “but it’s such a pleasure and an honor to witness the small successes and to learn from them and be a part of their recovery, even for a little while. And I’ve loved experiencing the camaraderie and group dynamic and encouragement they give one another. It’s really unforgettable.”