Aphasia patients teach doctors, nurses how to talk to them

On a warm spring afternoon, groups of people sit talking at a few wooden tables in a small auditorium. 

At first look, it seems unsurprising. But here's the catch: at each table there's one person with aphasia, a disorder that affects their ability to communicate.

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"We've had it compared to being in a foreign country," Carol Goff told CBC News. Her husband Steve has had aphasia since he suffered a stroke in 1994. "You don't have altered intelligence, you just have to find a different way to communicate."

Patients become the teachers

Also at the table are people in the medical profession: doctors, nurses, personal support workers and speech language pathologists. 

They're here to learn new ways to talk with patients who have aphasia. Workshop organizer Antonella Samson, who also leads the Waterloo Wellington Regional Aphasia Program, says sometimes these patients struggle not only to be understood, but also to make clear they have something important to communicate.

"Many of the participants in our program have always said to me that they feel like they are not heard," Samson told CBC News. "They have a lot more to say."

Treated like a child

The disorder affects each person differently. In Steve Goff's case, he says he has always been able to understand what other people are saying to him, but he is now only able to speak a few words himself. 

The more the better. We've made great progress, but there's more to be done.- Carol Goff

Some people with aphasia may not be able to speak or understand speech. Others may be able to speak, but have trouble reading, writing, or doing math.

The trouble with aphasia, according to the Goffs, is that the ability to talk is often "equated with" a person's level of intelligence or mental capacity.

Carol Goff says because her husband couldn't speak after the stroke people would often treat him like a child — even  one hospital nurse. 

"You could see the frustration," she said. By way of agreement, Steve Goff growls and grimaces. It's something he will never forget.

Free resources

Workshops like the one at Grand River Hospital's Freeport Campus in Kitchener give families like the Goffs hope that future medical professionals will be more understanding of people with aphasia, they say. 

The Aphasia Institute in Toronto has also recently announced that some of its training and conversation resources will be available free in Ontario, after a $1.2 million investment from the provincial government. 

Some of those resources include: 

• A book that explains, in pictures, what aphasia is.
• An online, searchable database of pictographic images relevant to aphasia.
• An online course that explains how to communicate with a person who has aphasia.

But even with the workshops and the free resources, Steve and Carol Goff say there is always more than needs to be done. 

Carol Goff says people in rural communities are particularly isolated, because aphasia programs tend to be located in cities. 

"So much has been done, but there's room for more," she said. "The more the better. We've made great progress, but there's more to be done."