(Host) People who suffer strokes face a great number of obstacles in their rehabilitation process. The physical challenges are difficult enough. But for many stroke victims the most frustrating aspect of their condition is a resulting chronic illness called aphasia.
VPR’s Mitch Wertlieb visited a support group in Burlington for people dealing with the condition.
(Wertlieb) Aphasia is the loss of acquired language – the inability to articulate words even though the brain knows they are there. It can make communicating even the simplest ideas at best a struggle, and at worst a terrifying and isolating experience.
But a group support program at the University of Vermont’s E.M. Luce Center for Communication is helping victims of aphasia feel less isolated, and improve their abilities to speak over time. I visited the center to meet some of the people in the program, and to learn more about the condition from Speech Language Pathologist Maria Short, who directs the group:
(Short) “Aphasia affects all aspects of language. It affects speaking, listening, reading and writing. It’s so fundamental to who we are and it’s very interesting to see the differences between someone’s intelligence and how they can communicate.”
(Wertlieb) But there are varying degrees of aphasia. Hunt is a 73-year old aphasia victim from Colchestser who suffered a stroke five years ago:
(Hunt) “Each person is a little different and I’m a little bit different. And normally if I didn’t have aphasia I’d be talking a mile a minute, because that’s the way I was before I had a stroke. And now I have a stroke, and I can’t hardly get some of the words out sometimes. But most of the time I do okay.”
(Wertlieb) I told Hunt it was difficult for me to notice anything wrong with his ability to speak. But he said it doesn’t seem that way to him:
(Hunt) “I feel I’m struggling. Every minute I open my mouth and say something, I feel like I’m struggling to find the words, to get the words out. But I just keep going and the more you keep going and do things, getting together with a group like this, and talking, the better you become.”
(Wertlieb) That feeling of frustration is evident in Bob. The people I met in the program were more comfortable giving just their first names. It was immediately clear that his aphasia following a stroke in 2000 affects his speech to a far greater degree:
(Bob, halting speech) “I can’t talk…”
(Wertlieb) “You mean you can’t talk the way you want to talk?”
(Bob) “That’s right. I can’t talk the way I used to talk fine. But I can’t anymore…”
(Wertlieb) “Do you feel, though, that if you keep coming to the group that you’ll make progress?”
(Bob) “I think so. I’ve already made progress so far. I couldn’t pick up a telephone before. Now I can talk on the phone, at least to my wife anyway.”
(Wertlieb) What makes aphasia so hard to understand is that both Hunt and Bob have the same ability to understand language and they both know what they want to say. The words are there but they don’t come out the way each man wants them to.
(Short) “So these are some of the pictures that we use. Let me find one that’s good…”
(Wertlieb) Maria Short passes around sheets of paper with a variety of symbols on them. A smiling face to indicate pleasure or a thumbs up for “okay,” everyday objects like a telephone or a car. These pictures help the members of the group with the most severe cases of aphasia, who can’t to this point articulate any discernible words at all. Chrissy is a graduate student assisting in the program and she says the ability some members have to use the pictures and even simple hand gestures to get a point across as been an eye opener:
(Chrissy) “For me as a clinician, it’s really exciting to see those moments where there’s lots of ways to communicate. It’s not just all about speech, that there’s a lot of things we can convey even when the words aren’t readily there.”
(Wertlieb) And the social aspect of the group is critical. Friendships have developed that go beyond the scheduled sessions. They go bowling together and see each other during the week. When they do meet at the Luce Center, Maria Short makes sure there’s something brought in to make everyone feel more at ease:
(Short) “Faith and Bay brought in chocolate chip cookies. I’ve had some comics last week and this week we have flowers and some grapes. Whatever makes us feel more well”. (Laughs.)
(Wertlieb) And the group shares a remarkable sense of humor. Bob is one of the aphasia sufferers who has severe difficulty speaking, but his wife Nan says that doesn’t stop him completely:
(Nan) “He can swear, that’s one thing that does come out perfect. They say it’s quite common.” (Laughs.)
(Wertlieb) Still, the frustration of not being able to say what you can clearly think weighs heavily on aphasia victims. Some of the members carry cards with them explaining that they are not mentally incapacitated should they find themselves in an emergency situation that requires help. Hunt says that kind of helplessness is a constant for everyone in the group:
(Hunt) “Everybody here has been devastated by that. They’re laughing about it now because they have to force themselves to laugh, because there’s nothing else you can do. Bob used to say, Why me? I mean, why me?”
(Wertlieb) For Maria Short, that sentiment is the chief reason why she and others at the Luce Center want to bring more aphasia support groups to Vermont, especially in rural areas:
(Short) “Group treatment for aphasia is being used around the country but we feel it’s not being used enough. And we’re trying to get more programs going in Vermont where people are working in groups. It’s very economical, but we feel it might be a more effective way to approach the difficulties with communication.”
(Wertlieb) People interested in forming an aphasia support group or joining the group that meets in Burlington should contact Maria Short at the E.M. Luce Center at 656-9725.
For Vermont Public Radio, I’m Mitch Wertlieb.