Sunday, July 15, 2007

Aphasia leaves them groping for words

Tuesday, July 10, 2007

MORRISTOWN -- Donna Gabriel paints and plays piano. Give John Dingman a set of charcoal and he'll go to town on portraits, seascapes and landscapes. Sally Cullinane volunteers, and Alvin Kornfeld has nine grandchildren to keep him on his toes.

Every Monday, these people from different walks of life come together as a group for coffee, bagels and conversation -- all in the name of social support.

"Speaking is very important," said Cullinane, of Morris Plains. "Conversation is very important. We have to remind ourselves to talk to a lot of people and teach them about aphasia."

Cullinane is one of group of stroke survivors who are living with aphasia and learning to speak, read and write again.

She speaks slowly but determinedly and occasionally flails her hands in frustration when the words or thoughts get stuck.

She looks at speech pathologist Marilyn Certner-Smith, who encourages her to take her time.

"You're doing great," Roberta Ellert chimes in.

Dingman offers her a piece of paper and pencil -- sometimes spelling out what one can't say is easier.

The neurological disorder is caused by damage to the speech and language centers of the brain. One-third of aphasia cases result from a stroke. Others stem from brain tumor or head trauma.

"The intellect and ideas are preserved, and there is conceptual understanding of word language," Certner-Smith said.

Aphasia affects about 1 million people in the United States, with 80,000 new cases diagnosed each year.

Treatment involves language therapy and intensive rehabilitation with a speech pathologist in which patients read, write, follow directions and repeat what they hear.

The Living with Aphasia Community Group allows them to celebrate successes and overcome language obstacles with empathetic compassion.

Spearheaded by group facilitator and speech therapist Certner-Smith, the group formed more than two years ago and has a core attendance of five to six people who range in age from 57 to 65 years old.

The first hour is dedicated to a structured discussion and the second is for socializing.

"This is a psychological wellness group," Certner-Smith said. "No one knows what it feels like unless you've got it."

An animated dog barking "Meow!" on Ellert's T-shirt sums it up.

"For us this (T-shirt) tells the story," said Ellert, of Berkeley Heights. "Each one of us has a different difficulty of saying things."

Ellert, for example struggles with word substitution and occasionally she will speak certain words in French.

"I think I spoke French at some point," she said.

After their strokes, Ellert and Gabriel temporarily lost their long-term memory.

"For two whole years I couldn't remember," Gabriel said.

Many aphasia patients carry a card identifying the disorder and explanation of their symptoms.

Two-time stroke survivor Kornfeld, of Succasunna, produces a card that gets right to the point:

"I have aphasia.

"This means I have difficulty talking, reading and writing, particularly when under pressure.

"You can help

"By taking things slowly and giving me time.

"Thank you."

Meanwhile, Dingman hands out a card courtesy of the National Aphasia Foundation informing strangers of his condition.

"My mind works perfectly well, I just have difficulty communicating.

"How you can help:

"Speaking takes time.

"Speaking is very difficult.

"Comprehending speech is difficult.

"Use simple drawings.

"Writing key words helps.

"Numbers are difficult."

Cullinane wears a purple awareness bracelet engraved with "aphasia."

In order to further awareness, the Morristown group has teamed up with the National Aphasia Association on a campaign to create an aphasia postage stamp.

The condition has also gained national attention in the comic strip "For Better or For Worse."

In September 2006, the character Jim, the grandfather, acquired aphasia as a result of a stroke. The strip's author, Lynn Johnston, draws from her own life experiences.


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