Help for when talking is tough

Brain injury patients get a valuable new communication tool from UNC researchers
Elizabeth Witherspoon - Sunday, Mar. 20, 2011 - CHARLOTTE OBSERVER

Patients recovering from stroke have to rely on people around them to interpret their needs and make decisions. Their difficulty with communication, called aphasia, can hamper recovery. So scientists at UNC Chapel Hill have been working on new ways to help them - 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. Gabrielle Gifford has shown how time-consuming recovery process is. Aphasia shows itself in different ways, depending on which part of the brain is affected. It affects the ability to express oneself through speaking, reading and writing, and to understand others. It 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 he still has language difficulties that prevent him from working.

For instance, he can write a list of some of the very words he cannot say, such as "at." Then, after writing a "c" in front of "at," he points to it and says "cat." "What is it?" he said pointing to the written word "at" with a shrug. "I don't know." Such problems can affect recovery this keeps people from stating the goals they'd like to set. These goals may be for physical, occupational and speech therapists. Frustration and not having a say can lead to withdrawal from therapy. One way therapists have communicated with people with aphasia is by using cards of color photographs showing everyday activities. People can point to them to help set therapy goals this may be to drive a car, grocery shop or go out with friends. Then they point to another card with numbers to show how important the skill is to them. Katarina Haley and Jenny Womack (at UNC) found problems using these cards. The photos were too busy and caused confusion. Instead, they felt hat clear and line drawings showing activities would help people with aphasia. With funding, they developed more than 100 Life Interests and Values (L!V) Cards. Stuart Helm drew the pictures. The process took five years of testing.

Ninety-five cards show activities in four categories: home and community; creative and relaxing; physical; and social. Eleven others show emotions - patients can show how they feel about an activity or anything else. The remaining cards help with conversations a green check mark meaning "yes" and a red X meaning "no. The UNC team used the new cards to interview family members separately from people with aphasia. They found that the family members could tell what the people with aphasia wanted less than 70 percent of the time. Afterward they brought them together - they discussed what they agreed and disagreed about. They also set goals for therapy. "There was always this very emotional and very informative interaction between the two of them," said Haley. From there, they worked together on goals for physical, occupational and speech therapy. "It makes the therapy that much more meaningful," she explained.

Carl McIntyre has used the cards in an additional way. Carl was an actor before his stroke. He and his speech therapist are working together on writing scripts for conversations he may have. For example, making a doctor's appointment by phone can be a huge task for someone with aphasia. McIntyre speaks clearly. With a script he can read,

Carl McIntyre practices a script for making a doctor's appointment. "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. It highlights the challenges of aphasia. He gives a brief

presentation after each screening. "Now purpose. Movie and help understand aphasia and stroke." Haley and her team are continuing their work helping people with aphasia decide on their treatment. 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, you can really make a difference," said Haley.