Wednesday, March 12, 2008

Aphasia sufferer finding herself a new voice

Bethesda woman uses technology to help communicate

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Tom Roff⁄Special to The Gazette
Potomac speech pathologist Joan Green coaches aphasia sufferer Toni Collins to use technology to aid in communication.
Bethesda resident Toni Collins has a lot to say. But sometimes when she speaks, the words don’t always come out the way she intends.

Collins, 62, has aphasia, a condition that affects speech and communication, brought on by a stroke she suffered 18 years ago. For people who suffer from the disease, often triggered by a stroke or traumatic brain injury, it can have a large-scale impact on everyday communication.

‘‘Instead of saying, ‘I want a sandwich,’ they might say, ‘I want a dog.’ Many times, they may not even realize it,” said aphasia advocate Amy Coble, information and administrative coordinator at the New York-based National Aphasia Association.

Many people don’t understand the disease, much less are familiar with the name, Coble said.

‘‘The biggest [myth] about aphasia is that there’s a lack of intelligence,” Coble said. Many can confuse the condition for being drunk or mentally unstable, she said. ‘‘Their intellect is intact, but they’re unable to fully communicate what they want to say.”

According to the National Aphasia Association, Collins is one of about 1 million Americans affected by the condition. About 25 to 40 percent of stroke survivors acquire aphasia, according to the organization.

For Collins, speaking and understanding conversations, as well as reading, were the biggest problems. After her stroke, the condition affected her confidence and she became isolated. She limited much of her active social life and even gave up certain hobbies she enjoyed, like cooking and gardening.

Her sister-in-law, Trina Myers, also of Bethesda, said she didn’t realize how much trouble Collins was having until after she moved in with her temporarily while her house was being renovated last year. In search of assistance, she came across Potomac speech pathologist Joan Green after looking online. Soon thereafter, she enlisted Green’s help.

‘‘Aphasia is this quiet thing that happens, and no one that has it can be a self-advocate because they can’t talk,” Green said.

Green developed a program that teaches patients to work with simple technologies to improve their communication skills. She combines free online technologies — like text readers and e-mail sent via audio files — with pay software designed for English language learners and people with communication challenges like aphasia.

Green met with Collins to assess her needs and to teach her to work with the technologies to practice speaking and understanding. She also encouraged Collins to use a calendar, maps, and a notebook to help people understand her.

‘‘My task is not to fix her but to figure out what can she do by herself to work on improving without relying on other people,” Green said.

Green said technology is a useful tool that is often overlooked by speech therapists. Collins, for example, can use software that highlights a picture, such as a body part, and prompts her to recall the correct word. The computer tells her if she is right or wrong.

‘‘A lot of speech pathologists will use a workbook, but you don’t get that immediate feedback,” she said. ‘‘I think everyone realizes now that technology is a good way to go, but most speech therapists don’t use it.”

Collins said one of her favorite technologies to use is Vemail — a free audio e-mail service that allows her to record her voice and send her message via an audio file to her friends and family. The service allows her to communicate without the barrier of slogging through a written e-mail. ‘‘For me, its’ great,” Collins said.

According to friends and family, Collins’s communication ability has improved drastically — and her confidence along with it. She’s now beginning to garden and cook once again. She also rides horses frequently. According to Green, she can now successfully make appointments over the phone, though numbers were once a large hurdle for her.

‘‘She’s doing great; she’s communicating her wants and needs much more effectively and she’s getting out all the time,” Green said. ‘‘I even found some pottery classes I wanted her to take, but she’s too busy.”

Collins practices on the computer about 90 minutes a day, and Green continues to meet with her every six months to introduce her to new technologies.

Myers said she hopes to raise awareness about the help that is available for aphasia sufferers. ‘‘People don’t know how many resources they have if you look for them,” she said. ‘‘It’s hard work, but you can get better.”

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