Friday, February 15, 2013

Leaving Aphasia at the Door

by Doug Vandewinckel ’86

As they sit discussing sports, politics and the news of the day, they might be any group of men. Their easy familiarity with each other, their willingness to listen, the occasional joke at another’s expense ... all suggest a regular meeting of good friends over a cup of coffee or perhaps a cold one in the backyard. But listen closely, and their shared struggles become more evident. A long pause as one fellow strains to remember a word. Another’s slight stuttering as he fumbles for meaning and clarity. This group didn’t come together by chance. Each member is recovering from a stroke, and each is learning to live with one of a stroke’s most common side effects — aphasia.

“Aphasia is a language processing disorder that impairs a person’s ability to speak or understand speech,” said Wendy C. Silverman, director of the Speech-Language-Hearing Clinic at Hofstra University’s Joan and Arnold Saltzman Community Services Center. She has been deeply involved in helping people with aphasia manage and improve their condition through a variety of therapies.

“Imagine being in a foreign country with a different language,” said Silverman. “You aren’t able to communicate with other people or understand what they are saying to you. Reading traffic signs and menus is difficult. Communicating your thoughts by writing is nearly impossible. You feel frustrated, angry or depressed, but you can’t leave. That’s what aphasia is like. Your intelligence isn’t impaired ... just your ability to communicate.”

Traditional treatments for aphasia most often involve individual therapy, helping stroke victims find new coping mechanisms and ways to regain their self-expression. In 2002 Silverman began to offer a different type of therapeutic approach at the Saltzman Center known as social participation, providing opportunities for people with aphasia to work together in a group to develop competence in communication and enhance their quality of life.

“In the past, most aphasia therapy focused on helping patients in the early stages following a stroke,” noted Silverman. “That limited time doesn’t adequately address the needs of the individual who will be living with a chronic disorder of communication. We need to view the treatment of aphasia as a continuum of services adapted to meet patients’ lifelong needs, helping them regain their ability not just to speak, but to communicate in a social environment.”

Silverman’s group consists of a varying number of men, usually eight to 10 individuals, meeting every week. They come from all walks of life, but share a common desire: to learn how to communicate despite their aphasia. Graduate students work closely with Silverman to facilitate the group meetings, because the study of aphasia and related neurogenic communication disorders is an integral part of their academic program.

“We take a three-pronged approach in the group,” notes Silverman. “One part is psychoeducational ... teaching people in the group more about strokes, aphasia and all things neurological. We have guest speakers come in to discuss different things, ranging from medical to legal issues to coping strategies. Another aspect is psychosocial, because the group members support each other. The third is therapeutic, because they get to work on their compensatory strategies in conversation, expanding on and practicing what they’ve learned in individual therapy.”

“What we get here are regular conversations with people,” said group member John Mangeri. He joined the group in February 2007, six months after his stroke. “That’s what we want all the time ... regular conversation and comprehension of what we want to say. I could speak fine after my stroke, but it still takes some time for the thoughts ... for the words ... to come through. Same with writing. I can write, but I can’t get the thoughts through my head properly. I find it very difficult. But if you talk more, after a while the thoughts come into your head more easily.”

Bob Sheehan agreed. “Most of the time, the conversation is easy ... we have an easy time talking together.” He has been with the group for about a year, following three strokes as a result of meningitis contracted while working as an engineer at a local airport. “Getting the verbal skills back has been the biggest challenge. The speech is there ... it’s just finding the words. Talking together in the group is helping me get back the confidence to get out there and do the everyday work.”

Paul Lowell, a former venture capitalist who suffered a stroke in 2010 as a result of endocarditis, has been with the group since March 2011. He appreciates the supportive nature of the group. “If you have eight or 10 people with aphasia, they’re all going to be different. Some people, if they’re having trouble talking and they get upset, it gets worse if they’re being pushed. But if you’re with friends, like in the group, they don’t push you. They give you time to find the words on your own. It helps you learn to get through it and talk much faster.”

Still, it isn’t always easy to be part of the group. Silverman noted that there have been several instances where individuals opted out of participating.

“Some people have a hard time in the group because they find it emotionally very difficult,” she noted. “They’re not used to sharing and talking about feelings. We’ve had a couple of people leave because they just didn’t want to be in that emotional place.”

Lowell also observed that there are some people who are simply unwilling to make the effort required. “I’ve met a couple of people with aphasia who have said, ‘You know what? I just won’t talk. Forget it. I’m done. I can’t do the things I used to do. I’ll just sit there.’ The thing is, it’s hard work, recovering from a stroke. You have to put the time in ... if you don’t put the time in, it’s not going to happen.”

The group is also adjusting to a new phenomenon: being stars of a soon-to-be-released documentary about their struggles. The film, Living with Aphasia, was created by Michael Kulesa – a graduate student in Hofstra’s Speech-Language-Hearing Sciences program as well as an avid filmmaker. In his film, Kulesa documents several group members, their caregivers and professionals at the University, including Wendy Silverman. They speak candidly about the challenges of living with a chronic speech-language disorder as well as positive coping strategies they use to manage effectively every day. The film is expected to be released in late 2012.

But for now, the group meetings continue as they always have ... full of lively conversations, jokes and stories, and the shared fellowship that comes from dealing with difficulties together. Says Silverman: “We have a saying ... we leave aphasia at the door. We’re just regular people. We’ll come in, we’ll talk. It’s very empowering for them.”


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