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 Playing Go Fish. (Danny Abriel Photos) |
It starts out like any other table conversation: gossip about the day to come, last night’s hockey game and so forth. It soon shifts to a discussion about the various pieces of folk art scattered around the table: a paper maché turkey, a seaside painting and a sculpture of Ronald Reagan. The mood is jovial; laughs and one-liners abound.
But to an observer, the conversation feels a bit like jigsaw puzzle: a piece here, a fragment there. The five patients seated in the boardroom of HÂţ»â€™s School of Human Communication Disorders vary wildly in their abilities to share thoughts with one another. Some seem to join the conversation with relative ease but struggle to understand its flow. Others speak only with indiscriminate sounds, relying on gestures to communicate.
Despite their differences, they all share the challenge of communication, explains Linda Wozniak, director of HÂţ»â€™s Intensive Residential Aphasia Communication Therapy program (InteRACT, for short). “It really brings them together,” she says. “They bond during the program because they know how hard it is to get their point across.”
This group session is a daily part of the InteRACT program, which since 2002 has attracted aphasia patients from around the world to Halifax each summer. They come for an intensive four-and-a-half week immersion experience with two unique features: patients live in residence and are accompanied by a communication partner from home, a family member or friend who will continue to work with them when they leave Halifax.
“It’s not just about what goes on in the therapy room, but making sure that they can communicate when they’re outside of it,” says Ms. Wozniak. “We want to get people to try new things or learn to do old activities that they used to do before they started their battle with aphasia.”
Though it’s often the consequence of a stroke, aphasia is not, as you might think, an impairment in the physical function of speech. Instead, it’s an impediment in a person’s ability to produce or comprehend language itself. The individual therapy sessions and group activities – which include excursions to the shopping mall and the library – are all aimed at retraining the brain to reconnect thought with speech. Ms. Wozniak says that it helps to imagine overcoming aphasia as akin to learning a second language: “It’s like learning the words over again. It’s like your vocabulary has been erased.”
If that’s the case, then at first glance one might consider the masters students who work with the patients to be translators. Yet their role in the InteRACT program is so much more. They are crucial to the program’s success, leading the group activities and facilitating many of the personal therapy sessions. And by working with multiple patients throughout the program, they gain valuable experience in customizing the care to the client.
“You really have to learn to adapt your therapy, because every patient with aphasia is very different,” says Shae Chapman, who like most of the students is working towards her master’s degree in speech language pathology. “This is likely one of the only chances I’ll get to work in such an intensive program. If I’m able to see the ideal therapy situation here, hopefully I can take what I learn to another clinical setting.”
On this particular day, student Courtney Digdon leads a group session using folk art as a tool to encourage communication. Each patient picks out their favourite piece of folk art and answers questions about it – why they chose it, how much they’d pay for it and what they’d name it. They also read biographies on the artists and answer questions.
“It’s very rewarding,” says Ms. Digdon of the opportunity to help aphasia patients overcome their disorders. “It’s something that’s so important to everyone – we all want to communicate. When you can’t communicate, or you can’t communicate in the way you want to, it can be devastating.”
It was completely out of the blue; in an instant our lives changed.”
One gets the sense that Nancy Maloney’s story is an all-too-common one, in spite of the somewhat unique circumstances under which it began. Her husband, Bruce Landon, lacked any of the major risk factors for stroke, but a spontaneous tear of an artery in his brain formed a clot that led to a stroke, impairing both his motor skills and his ability to communicate.
Before entering the InteRACT program, he spent eight months bouncing around from one hospital to another in British Columbia, never finding the right combination of intensive rehabilitation and personal attention. Ms. Maloney hopes the InteRACT program will produce some gains, although she acknowledges there’s still a long path to recovery.
“Bruce still gets discouraged because he wants to be able to do everything he did before,” she explains. “But we’re grateful for any improvement. We know recovery happens over years with appropriate rehabilitation services.”
She also wishes this sort of care was available through the public medical system. As it stands, the InteRACT program is private and costs $16,500. Ms. Wozniak explains that the program operates entirely under a cost-recovery system, and its organizers are constantly searching for new sources of funding to help keep costs low for patients and their families.
For some, the investment is more than worth it: Virginia native Perry Tsacoumis made his third trip back this year. At times when talking, he stops to count things out with his hands; numbers still aren’t easy for him. But while his speech is slow and stuttering, it’s also crystal clear and comprehensible – significant progress from two years ago, when he fell ill on Christmas Day.
Mr. Tsacoumis jokes that the student assistants are “tough – good tough” and says his favourite part of the program is working with others going through the same struggles: “Talking … interacting … sharing different opinions about different stuff.” He credits that sort of interaction and therapy with the gains he’s made: “Wonderful. Wonderful improvement here.”
ĚýIt’s the sort of improvement Chip Hilborn, also from Virginia, hopes for his wife Lynda. Her memory, motion and speech have all suffered after a bout of encephalitis just over a year ago and recovery, to this point, has been slow and hard.
“The hopes are always greater than the realistic hopes,” Mr. Hilborn concedes, and his tone suggests he’s keeping his expectations grounded. “But I hope that we can spark some memories and that she can regain more of her ability to communicate. Maybe she’s just at the right point in her recovery but in the last three weeks, my wife has made more progress than in the past eight months.”
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Go fish,” says Steve Neighbors, speaking across the table in the direction of Al Lugli. Mr. Lugli’s verbal communication skills are limited, but – ever the jokester – he responds with a comical glare. He dips into the pile to select another card to add to his hand, laid out on an upside-down brush for easy access.
The card game isn’t just for kicks. It’s part of a process that Ms. Wozniak describes as “constraint theory” – restricting a stronger skill to build strength in a weaker one. The patients can’t use gestures to describe the photos on the cards, and are forced to speak to one another to ask for cards and respond to requests. It’s also a chance for the group to participate in something familiar and help build their confidence back.
“It’s so easy for them to retreat into themselves in their condition, so confidence is extremely important,” says Ms.Wozniak. “The majority of patients we see gain back some of that self-confidence in their communication skills, and that alone can make a huge difference in their everyday life.”
There’s not just confidence on display as the players hide their cards from one another behind binders and notebooks – there’s bravado, trash talking and all the other hallmarks of a classic card showdown. The game may take longer than normal as the participants try to find the words they’re seeking, but there’s a normalcy to it that’s heartening.
Like each patient’s path to recovery, the game never really ends; it just picks up again the next day. Tomorrow there will be more one-on-one therapy, another group session and – for the patients and their families alike – another day hoping for breakthroughs big and small.