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Tuesday
Sep282010

Aphasia: A Misunderstood Condition

 

Do you recognize this particular nightmare? You are trying anxiously to communicate that you need help, but when you open your mouth no sound comes out, maybe just a string of gibberish. In any case, no one is able to understand your desperation. For people experiencing aphasia, this is not simply a bad dream, it is a reality.

Karrie Page, a Registered Speech-Language Pathologist at Red Deer Regional Hospital Centre describes aphasia as a condition where your brain holds your words hostage. “A stroke may impair not only mobility, but the ability to communicate,” she says. “The stroke renders its victims prisoners in their own bodies.”

Red Deer resident June Fowler describes her condition following a stroke in 2009 as “a mess”. Not only did the resulting aphasia leave her scrambling her words, but also unable to comprehend the speech of family members and hospital staff, or to read. Her road to recovery included weeks of intense speech therapy, as well as re-learning the practical and emotional fundamentals of communication.

Strokes are the most common cause of aphasia, but neurological diseases such as Parkinson's, tumours, dementia, or a sudden head trauma are other causes. Brain cells die when the supply of oxygen and other vital nutrients carried through the blood supply is stopped. The lobes of the brain which are concerned with language are affected by the resulting lesions or scarring from dead cells.

While not all strokes will result in aphasia, Page says approximately 1,100 of the 5,500 Albertans each year who suffer a stroke will have some form of the communication disorder. The Heart and Stroke Foundation estimates that 100,000 Canadians live with this “frustrating and misunderstood” condition.

Page points out that aphasia is an impairment in language, not necessarily in cognition. A person with aphasia can still think clearly, but has difficulty understanding incoming messages, in sending messages out, sometimes one or the other, and sometimes a combination of both. Frustratingly, the individual knows what he is thinking of saying, but is unable to express the thought.. He may speak in long, meaningless sentences, use incorrect or even made up words. Another individual may speak in short sentences, substituting a word or two to replace a sentence. The person may or may not be aware of their mistakes in language, depending on the severity of their condition.

Fowler's daughter, Cheryl Daoust, says her mother's speech sounded “like Martian [after the stroke]. Really, we had difficult understanding her half the time. It was like a toddler, learning to talk.”

According to Page, the symptoms of aphasia can range from mild to so severe that communication with the individual is nearly impossible. Depending on the specific language areas of the brain affected, while one person may struggle to retrieve the names of objects, another person may find it difficult to speak, read, write, or understand the speech of others.

Understandably, someone struggling with aphasia can feel awkward and isolated, resulting in low self esteem and frustration. They may also have to deal with the negative attitude of the people around them, creating additional barriers to communication. “The loss of language diminishes one's ability to share information, to create intimate relationships, and fulfill societal expectations,” says Page. “Individuals with aphasia lose a part of themselves.”

She stresses, however, that an emphasis on “what aphasia is not” can help dispel common misconceptions about the condition. “One of the most common misconceptions associated with aphasia is the belief that the person is reduced to the capacities of a child. Many family members believe that because the person with aphasia has impaired communications skills, his ability to think is also impaired.”

Sometimes people who encounter an individual with aphasia respond as if he or she is mentally challenged, psychologically ill, demented, deaf, or drunk, says Page. As in Fowler's case, the sufferer may be completely aware of the deficit in communication, because while their language is impaired, their intelligence remains intact.

Saying inappropriate things, crying or laughing at the wrong times, perhaps swearing for no reason, are not uncommon symptoms. Speech may sound slurred, or contain mispronunciations. “They might require help from other people in order to communicate effectively.”

“You have to make light of it”, says Daoust, referring to the first few days following Fowler's stroke when the family was struggling to come to terms with her recovery.

Not surprisingly, people with aphasia often experience a dramatic change socially. Friends and relatives may become afraid of interacting with them from a lack of understanding about the condition. The reduced means of communication can lead to meagre opportunities not only in day to day life, but also in the access to meaningful activities and the ability to simply participate actively in conversations, according to Page. “Humans are naturally social beings who thrive on communication and interaction. When this is taken away, the effects can be devastating.”

Both Fowler and Daoust emphasize the importance of seeking out opportunities to re-learn communication skills. Under the speech-language pathologists' care, Fowler was encouraged to re-establish her routines such as preparing meals, phoning family members to talk, and socializing with others. Fowler has developed strategies such as saving voice mail on her answering machine and then double checking her accuracy in understanding the information with her daughter. She looks forward to sharing meals with friends, volunteering, or just visiting others as opportunities to improve her condition. While some activities, like watching a movie with her granddaughter, are difficult at times, Fowler nevertheless is eager to keep learning and improving, including asking others to correct her when she chooses a word incorrectly.

“The changes that result from having aphasia are sudden, unexpected, unwanted, but basically invisible,” Page says. “This makes it hard for people to recognize it, and to know how to help.

In Red Deer, aphasia support groups provide encouragement and conversation for people living with the condition. Page hosts a group called Coffee Chat at the Golden Circle, while another one meets at various venues in the community and is facilitated by individual members. Page says that usually a person will first attend traditional, individual treatment with a speech-language pathologist, and then progress into group treatment.

“Basically, our goal is to keep our clients talking. Often, people will protect what has been injured – for example, if you sprain your wrist, you tend to protect it, not use it as much – and the same is true for clients who have had a stroke. They have had their language injured, and tend to not want to use it. As a speech pathologist, I want them to not only keep using their words as much as possible, but to supplement their words with any form of communication that may be helpful.”

That may include using gestures, writing, drawing, or using technology such as a computer to express themselves. Speech-language pathologists assess and observe their clients' abilities in comprehension, fluency, repetition, naming, reading, and writing.

Fowler notes that following intense work in speech and language therapy, she challenges herself to instigate conversations, to read the paper, and to listen to the conversations of others as part of her rehabilitation. “I'm now feeling comfortable, and I have really come a long, long way.”

“The plan is to help the client to fully utilize their remaining skills and to learn compensatory means of communication,” Page says. “Typically, the impact on their life can be reduced through treatment - either through recovery or by lessening the severity of the disorder, by compensating for the condition by learning alternative forms of communication, and by teaching others to help – slowing their rate of speech, writing key words down, using cueing techniques to help the person get their words out.”

“Adjusting to a life with aphasia is difficult for the person and their family. Despite communication barriers, there are always ways that family members can help their loved one.”

 

 Article appeared January 25, 2011 Red Deer Advocate

An edited version appeared in the July 2011 issue of the national journal Communique

May not be reprinted, partially or in full, without permission of author