When the words won't come: living with aphasia

From the Saturday, Oct. 5, 2008 edition of the Northwest Herald:

When the words won't come: living with aphasia
By DIANA SROKA - dsroka@nwherald.com

Kristen Carlstedt thought she would get married this fall. The dress was picked out. But although much of the planning was still up in the air, Carlstedt, 33, and her fiancé, Rodrigo, were ready to start their life together.

Then in March, Carlstedt suffered a stroke while typing an e-mail at work. Instead of choosing flowers and bridesmaid dresses, Carlstedt has spent the past few months learning to live with a stroke side effect, aphasia, that inhibits her ability to speak and use language to communicate.

Carlstedt joined about 1 million Americans who suffer from aphasia, according to the National Institutes of Health. Aphasia can be triggered by strokes, traumas or tumors, and it's estimated that about 80,000 people acquire aphasia annually.

The severity of the condition varies; many experience difficulty understanding spoken words, contributing to a conversation, reading or understanding written words, or writing or doing math, according to the Rehabilitation Institute of Chicago.

"Imagine knowing what you want to say, but you can't get it out," said Barb Wasilk, director of Centegra Hospital's Neurotrauma Day Treatment Center, in Crystal Lake. "Or if people are talking to you ... you have no idea what they're saying."

Initially, Carlstedt's aphasia was so severe that she could not speak at all.

"Speech was hard work," Carlstedt said. "I can't tell you how many times I cried. It's like, when am I going to get better?"

She also suffered the physical side effects of the stroke and had difficulty using her right arm and leg.

Wasilk said it’s crucial for aphasia patients to start the recovery process with a speech language pathologist or therapist right away. Therapy is the only way aphasia patients can recover, and the sooner they begin, the more fully they will recover.

Rob Walkington, 45, also had a stroke in March and suffers from aphasia. He started speech and physical therapy within two weeks of the stroke.

“My right arm was just toast,” said Walkington, of Woodstock. "I really couldn’t do anything with it.

After he was released from the hospital, he began receiving treatment at the Neurotrauma Day Treatment Center, which is the only intensive day treatment facility for aphasia patients in McHenry County.

His wife, Kathi, often joined him at therapy, which therapists said helped with the recovery process.

"It's crucial for family to be a part of the treatment process and treatment plan,” Wasilk said. "To educate them about aphasia, teach them how to be an effective communication partner."

When Walkington struggled with his speech, he would look to Kathi because she knew what he was trying to say. But therapists encouraged him not to become dependent on having someone speak for him and taught him different ways to find words on his own.

"The struggle to find words is a big part of my life now," Walkington said.

One of the techniques he learned was circumlocution – thinking of related words that can help him remember the word he is seeking.

Talking with Walkington, most wouldn't be able to tell that he suffered a stroke this year. He speaks well and has even returned to work full-time. But occasionally, in conversation, Walkington can't find the right word and asks the other person to wait a moment while he thinks and uses circumlocution.

Therapists also encourage aphasia patients not to clam up because they’re having trouble speaking.

“Somebody who can’t communicate effectively will want to isolate themselves,” Wasilk said. “Encourage them to socialize or interact with others.”

Carlstedt lived in Michigan at the time of the stroke. As she began rehabilitation, she moved home to Crystal Lake to live with her parents, Rick and Jan Carlstedt.

Beyond helping her renew socialization skills, living at home allowed her more time to practice what she was learning in therapy.

Her parents gathered educational material, such as books that teach children to read, do math and tell time.

"We had to work on re-learning everything," Jan Carlstendt said.

Now, she can follow and carry a conversation, but she still struggles to put sentences together or find the right word.

Within the next year, Kristen Carlstedt hopes to begin working as a physical therapist part-time, complete her doctorate and get married.

Aphasia has changed both Carlstedt's and Walkington's lives, but they don't let it get them down.

"You really need to step up, and do it with vigor," Walkington said. "The more you work at it, the more it's going to get better."

To learn more: Information on aphasia can be found at www.nidcd.nih.gov/health. Click on Voice, Speech, and Language and then on Aphasia.