CHAPEL HILL — Patients recovering from stroke or the sort of traumatic brain injury suffered by U.S. Rep. Gabrielle Giffords are at the mercy of people around them to interpret their needs and make decisions.
Their inability to communicate, called aphasia, can hamper recovery.
So scientists at UNC-Chapel Hill have been working on new ways to bridge the communication gap with aphasia patients, giving them better tools to help them express themselves and set their own recovery goals.
About 1 million people in the U.S. are living with aphasia, according to the National Aphasia Association, with the Giffords case highlighting the time-consuming recovery process most face.
The disorder manifests itself in different ways, depending on which part of the brain is affected by injury or stroke. It affects the ability to express oneself through speaking, reading and writing, and to understand others, yet does not affect intelligence.
Carl McIntyre, a father of three from Laurinburg, knows the frustration of aphasia. After a massive stroke five years ago when he was 44, he has made a comeback. He has continued to improve with treatment at UNC, but has language difficulties that prevent him from working.
For instance, he can write a list of some of the very words he cannot pronounce, such as at.Then, after writing a c in front of at, he points to it and says "cat."
"What is it?" he said during a recent session at UNC, pointing to the written word at with a shrug. "I don't know."
Such problems can impede recovery, keeping people from expressing the goals they'd like to set with the physical, occupational and speech therapists. Frustration and loss of a voice in the process can lead to withdrawal from needed therapy.
One way therapists have communicated with people with aphasia is by conducting interviews or using cue cards of color photographs depicting ordinary life activities.
Patients point to them to help set therapy goals, signaling they want to regain a particular ability such as to drive a car, grocery shop or go out with friends. Then they point to another card with a numerical scale to indicate how important the skill is to them.
Katarina Haley, co-director of the Center for Aphasia and Related Disorders at UNC, and Jenny Womack, an occupational therapist, found limitations in using the standard cards. The photos were too busy and caused confusion about their meaning.
Instead, they hypothesized that clear and expressive line drawings depicting very specific activities, without visual clutter, would help people with aphasia better communicate their preferences.
Funded with grants from UNC School of Medicine and N.C. TraCS Institute, one of a consortium of federally sponsored academic centers that move scientific discoveries into practice, they developed more than 100 Life Interests and Values (L!V) Cards. Stuart Helm illustrated them. The process took five years of testing and refinement.
Ninety-five cards depict activities in four categories: home and community; creative and relaxing; physical; and social. Eleven others depict emotions so patients can express how they feel about an activity or other aspect of their program. The remaining cards help with conversations, with a green check mark meaning "yes" and a red X meaning "no," to mark piles during sorting.
When the UNC team used the new cards to interview family members separately from people with aphasia, they found that the family members, on average, were able to predict what the people with aphasia wanted less than 70 percent of the time. Afterward they brought them together to discuss what they agreed and disagreed about and to set goals for therapy.
"There was always this very emotional and very informative interaction between the two of them," said Haley. From there, she said, they worked together to address goals of physical, occupational and speech therapy.
"It's not just focused on just one discipline, and that makes the therapy that much more meaningful," she explained.
McIntyre, the Laurinburg stroke survivor, has used the cards in an additional way. An accomplished actor based in Charlotte before his stroke, he and UNC speech-language pathology graduate student Samantha Goldberg are working together on writing scripts for conversations he anticipates having.
For example, making a doctor's appointment by phone can be a monumental task for someone with aphasia. Armed with a script he can read, McIntyre speaks clearly, even including those small words he leaves out in spontaneous speech.
"Every year I'm better. I'm still progress every year," he said. "I stroke and one year and half, one or two words. Nothing. ...But now I'm happy."
McIntyre has starred in a 40-minute film about his experience, being shown at academic venues to educate and raise awareness about the challenges of aphasia. He gives a brief presentation after each screening. "Now purpose. Movie and help understand aphasia and stroke."
Haley and her collaborators are continuing their work helping people with aphasia determine the course of their treatment. Using tools under development, the next step is developing individualized plans that foster independence.
"When you work on items that are selected by the person and give them tools to work on them between therapy sessions, you can really make a difference,"Haley said.