Loss of language has devastating impact

Packing for a trip beyond North America, the careful tourist checks off a list: passport, tickets, credit card, traveller’s cheques and a good phrase book or dictionary to help with the language barrier.

But what if the hapless traveller can’t read a phrase book, understand an unfamiliar alphabet or comprehend a single word in that far land? It’s a frightening prospect, and strangely enough, one faced by thousands of Canadians every day in their own country.

These people have aphasia, a loss of language due to stroke, brain injury or even a neurological condition. Because the language function is centred in the left side of the brain, an insult to that area can result in disruption in language abilities, and possibly some degree of paralysis on the right side of the body. The exact site and the degree of the damage to the brain determine the extent of disability.

Since disruption in language occurs in the brain, not at the level of the mouth, people with aphasia may have various levels of difficulty reading, writing and talking, as well as comprehending speech. Even hearing-impaired people accustomed to conversing in sign language may have trouble coming up with the apppriate signs.

“It’s very complex,” says Lynda Adler, development officer at the Pat Arato Aphasia Centre in Toronto. “It’s not a cookie-mould kind of thing.”

Let’s return to that far-off country

If you couldn’t understand the language, you wouldn’t be able to read magazines or daily newspapers. Television and radio would be meaningless. You wouldn’t be aware of important issues of the day, or take pleasure from the less significant stories you once found entertaining. If there was an emergency, you couldn’t call for police or fire services. You couldn’t make an appointment to see a doctor, or describe your symptoms. You couldn’t go anywhere because you couldn’t ask directions, follow a map, read signs and know at which stop to get off public transit.

Worst of all, you’d feel totally isolated, unable to share your thoughts, feelings and hopes — unable to connect. Yet you’re still the same person you were back home in Canada, with the same intellect. Unfortunately, the people you encounter probably will see a different you. “People are going to perceive you as illiterate, mentally challenged, drunk,” says Adler, “nothing to do with who you really are. This is one of the stumbling blocks for people with aphasia. There’s a perceived lack of intelligence. (Intellect remains intact in people with aphasia, unless the stroke actually damaged areas of the brain responsible for reason or abstract thought.)

“The biggest fear, if you talk to these people,” she says, “is that others think they’re stupid, they have no opinion, they’re drunk or mentally disabled.”

And if your problem is aphasia, how do you explain that you’re none of those things? Part of the problem is that most people have very little understanding of what aphasia is. In fact, says Adler, “aphasia is where Alzheimer’s was about 10 or 15 years ago, when nobody knew what Alzheimer’s was.”

In a nationwide survey done with the Heart and Stroke Foundation, the Centre discovered only 18 per cent of people across the country recognized the word and had some idea of what it actually meant. “That’s incredibly low,” says Adler, “considering the high number of people who have aphasia.” (In Ontario alone, there are more than 30,000 people with aphasia.)

Types of aphasia

One of the manifestations of aphasia is Wernicke’s aphasia, also called sensory, receptive or fluent aphasia. This person can’t understand language and may not notice that people aren’t getting the message. The words tumble out easily but may not make sense.

Imagine how frustrating life is for somebody with Broca’s aphasia, known also as motor or expressive aphasia. Although they know what they want to say, people with this form of aphasia can’t manage to get those thoughts across.

Global aphasia is a combination of these two forms, and the affected person is unable to communicate what he’s thinking and doesn’t understand what’s being said.

The degree of the resulting aphasia generally reflects the severity of the stroke and, over time, some aphasia may gradually improve and even disappear.

Those working with people with aphasia frequently tell them “I know that you know.” It’s a comforting phrase that let’s them know their difficulty with language is recognized, that the person within is acknowledged and valued.

To find a voice

Housed in a former supermarket in a quiet residential area of north Toronto, the Pat Arato Aphasia Centre hums with noisy conversation. In one large room, a number of mostly elderly people, some in wheelchairs, are seated around several tables. One woman wields a large marking pen and appears to be the facilitator. At these tables, people with aphasia meet others with the same level of impaired communication, and participate in a discussion, with the help of the trained conversation partner.

The centre also provides a 12-week program for members and their families, to help them learn to provide supported conversation with their loved one and gain an understanding of how to deal with the problems created by aphasia.

Twenty years ago, Pat Arato was determined Oscar, her 44-year-old husband, would not spend the rest of his days in an institution. He’d suffered a stroke following a boating accident and doctors saw little hope of recovery. Following the example of Academy-award winning actress Patricia Neal, who’d struggled back from a devastating stroke and aphasia, Pat recruited volunteers to work daily with her husband. (One volunteer, a speech pathologist, trained the others.) Later, Pat advertised for people with aphasia who needed the help of this now-trained crew. The centre that was eventually named in her honour now functions as a training hospital, research centre, and resource for the over 300 families it serves a year.

Lynda Adler smiles as she mentions the speech pathologist who came to the Centre after working with people with aphasia in South Africa. “She couldn’t put her finger on what it was right at the beginning,” says Adler. “She called it the “magic factor.” There was something happening here that wasn’t happening anywhere else.”

That speech pathologist, Aura Kagan, now the centre’s Program and Research Director, is completing her PhD this year, based on the centre’s use of supported conversation — communication aided by a trained conversation partner.

Since communication occurs on many levels beyond the merely verbal, a conversation supporter will use whatever is necessary to deliver or receive the message. That may include using a marker to write a key word; a pictographic manual to point out a particular object; and the use of body language. It also includes thoughtful tailoring of questions and responses to the affected person.

The effectiveness of the technique is dramatically illustrated in a video narrated by astronaut and neurologist Roberta Bondar: We’re introduced to Jerry, who has aphasia, yet with the help of a trained conversation partner, he’s involved in the discourse and appears competent, able to make decisions about his life.

Jerry’s body language tells a different story when he’s paired with a young doctor untrained in supported conversation: Jerry seems to be saying, “This is utterly hopeless. I’m totally helpless here.” Worse, he seems disconnected, perhaps unable to deal with important decisions. Later, Jerry’s inherent competence is again revealed during a conversation with the same, now skilful, doctor who had received training at the centre.

Relationships are built and maintained through communicating, so aphasia centres fulfil an important role in providing a setting for social and community activities. Card playing, ceramics and painting, for example, offer an opportunity to chat and develop manual skills (many aphasic people have right-sided disabilities).

Under the direction of music therapist Linda Dessau, people at the Pat Arato Aphasia Centre communicate on another level, through the creation of music. Their bell choir uses specially adapted bells that are light in weight, easy to handle — and sound magical.

Public speaking is a stomach-churning challenge for most people, but eight determined people with aphasia at the Centre turned it into a triumph. As members of Speechcrafters (a Toastmasters program), they learned the fine art of delivering an effective speech, then proved their training — and their courage — at a celebratory graduation dinner where they presented their speeches. Unfortunately, funding for these centres and their programs is inadequate and cuts to hospitals have also meant fewer speech pathologists available in hospitals. And aphasia, although complicated, is largely an invisible problem.

“If you think of any other cause,” says Adler, “everybody gets up and fights for themselves. The biggest breast cancer fighters are the victims themselves… These people can’t talk, so they can’t advocate on behalf of themselves.

“When a person has a stroke they stop working, and their caregivers stop working too because they need looking after. So their socioeconomic level drops.” The outcome is that all of their energy goes into merely surviving. There’s nothing left over for advocacy.

But others are trying to raise a voice for these people. This year saw the launch of a National Aphasia Awareness Week, supported by 32 aphasia organizations across the country. An international aphasia awareness week is in the planning stages.

And what can you do to help your friend or family member? Adler suggests finding a centre where you can take some training — develop alternative language skills — so you can learn to develop a level of meaningful communication. “A person with aphasia can come out of therapy and know how to say washroom, coffee or tea,” says Adler, “but life is more than words like washroom, coffee or tea.”