Sunday, April 29, 2007

Women give aphasia patients place to turn

Pair honored for work with those who can't comprehend language

Saturday, April 28, 2007

Marilyn Certner Smith has devoted her life to making "aphasia" a household word.

"It's an unusual word, and most people don't know what to make of it,"Certner Smith said. "And even with the definition, it's hard for people to grasp it."

Aphasia is the loss of the ability to produce or comprehend language, and typically is caused by a stroke, brain injury or a tumor. There are more than 80,000 cases diagnosed nationwide each year, affecting more people than Parkinson's disease.

Certner Smith, 54, of Madison, and Shirley Morganstein of Montclair were honored on Friday by the New Jersey Speech-Language-Hearing Association for co-founding Speaking of Aphasia, a program that helps patients cope with the disorder. It is the top statewide honor that a speech pathologist can receive, according to NJSLHA's Monique S. Kaye.

"People with aphasia would have nowhere else to turn," Kaye said. "You don't typically see this in a hospital or rehab setting. (People with aphasia) become isolated, but this program gets people together and makes them feel more confident."

Identity blocker

Living with aphasia is like waking up in a foreign country where you can't communicate with anyone. It affects the ability to speak, read, write, understand and use nonverbal communication in varying ways.

The common woe everyone with the disorder shares is that it "strikes the core of who you are as a person," Certner Smith said. "If you have trouble talking, you have trouble showing who you are, because it makes it that much harder to connect with people."

Three years ago, Certner Smith and Morganstein left high-paying jobs -- Certner Smith as the director of rehabilitation at the Kessler Institute --because they missed patient contact, so they created Speaking of Aphasia.

Speaking of Aphasia, based in Montclair, offers one-on-one and group programs for people with aphasia and their communication partners. It also trains speech pathologists to mimic the work that she and Morganstein perform.

Philosophy of treatment

"It's a philosophy of treatment that aims to improve the quality of life, not just communication with people who have aphasia," Certner Smith said. "We look at what people want to do and what people can do instead of looking at obstacles and hardship."

The outcome for each patient is different, she said. Some return to work and others redefine new opportunities for themselves.

Certner Smith has lived with her husband, Jeff, and son, Alex, in Madison for 11 years. When she's not reading or writing about aphasia -- which isn't often, she said -- she enjoys reading fiction, jogging, cooking and spending time with her family.

Certner Smith received a bachelor of arts degree in speech pathology from Ithaca College and a master of arts degree in speech pathology from the University of Illinois. She learned about the field in an introduction to communications course during her freshman year of college and it "instantly clicked," she said.

"It's a wonderful mix of linguistics, medical aspects and education," Certner Smith added.

Although she has performed much research and published numerous articles on aphasia during the past 30 years, she doesn't consider herself an expert.

"I'm still learning," Certner Smith said. "I've had an interesting journey, and I'm just grateful for the opportunity to work with such amazing people. They inspire me to be more open to what matters most in life, and to be more mindful of daily experiences -- you can't help but be moved."