Sunday, July 13, 2014

Today's Word is 'Aphasia'

According to the National Aphasia Association, an estimated one million people in the United States have acquired aphasia, or about one in every two-hundred and fifty people. With that many individuals affected by this devastating language disorder wouldn't you think that more people in the general population would have a better understanding of what aphasia is all about? Since my husband's stroke I've been hard pressed to find anyone outside of the medical profession who has even heard the word 'aphasia' much less understand that it's not a psychological illness or mental retardation. So, today's word---let's all say it together---is 'aphasia.' Aphasia is a condition, not a disease, and it's produced by a brain injury such as a stroke or traumatic head injury. Strokes are the most common cause of acquired aphasia. Even people within the stroke community have a hard time absorbing the facts about aphasia, that there are many types and degrees of severity depending on the exact location and size of the damage in the brain. Or in other words, all aphasia is not equal. Each person who has it is unique. Estimates from the National Aphasia Association say that approximately half of the people with symptoms of aphasia have transient aphasia and will recover completely within the first few days after a stroke or head injury. In the other half, for whose individuals with aphasia that lasts longer than three months, a complete recovery is highly unlikely. There is no magic pill, no hi-tech treatment or surgery that can cure aphasia.

Coming to terms with the more severe forms of this condition---the long terms deficits and social isolation of losing one's ability to communicate in the normal way---requires many months of treatment with a speech pathologist. But it's not hopeless in the sense that families dealing with severe aphasia, like our family does, can learn valuable coping and compensation techniques. People with milder forms can improve with hard work and therapy although aphasia never goes away for them; it will come back to haunt them when they are tired or under stress. Traditional therapy can include using computer-aided exercises which are best recommended and overseen by a speech pathologist so that you get the right "fit." Therapy is based on a lot of repetitive exercises and patience for everyone involved. My husband, for example, had a one word vocabulary for many months. That word was "yes" and it took many more months to get him to where he could say "no" with any accuracy.

People will naively ask me why my husband, Don, doesn't just write what he wants to say. I wish it were that simple but the type of aphasia he has includes a related condition known as agraphia which is the inability to use written language. This is not true for all aphasics, some can write and type.
People will tell me that Don was able to say such and such the last time they saw him. "Why can't he say it today? Did he have a relapse?" they want to know. They don't understand that: 1) he may have been parroting someone else's speech which isn't the same thing as planning what he wants to say in his head and being able to sequence the muscles in his mouth to get those words out; or 2) the sequencing might work for him one day, but not another.

Upon hearing this last explanation, some people will then ask, "Does he still have paralysis in his vocal cords and mouth then?"

"No," I'll answer, "That's a different stroke related language disorder from what Don has. His aphasia is paired up with apraxia, yet another aphasia related condition. He knows exactly what he wants to say---the thoughts form in his brain---but if he tries to say something, he can't. If he doesn't try, he can parrot whatever he hears if he does it with no forth thought." We use parroting to try to jump-start planned speech but it's not the same thing as teaching a little kid new words thinking that you're building vocabulary in a person with Don's combination of speech issues. His language disorders could be compared to a car with a bad transmission. His brain (the car motor) and the muscles in his mouth (the wheels of the car) work fine but the transmission in between is out of commission.

It takes a while for a speech therapist to sort out what type of aphasia/s their clients might have and it's not uncommon for a client to have several forms of aphasia and/or other related language disorders. The therapies often vary for different types of aphasia and their related conditions. In addition to apraxia, the labels that have been hung on Don's language disorders---all caused by damage in the frontal lobe of the brain---include: non-fluent aphasia, Broca's aphasia (the inability to use little words like 'it', 'to' and 'the') and telegraphic aphasia. Nouns come out the easiest for him but the other parts of speech are practically non-existence.

Other types of aphasia that my husband does NOT have include: Wernicke's aphasia (caused by temporal lobe damage and it produces fluent speech with no meaning), conduction aphasia (the speech is intact, but dictation is impaired), global aphasia (the person loses most language function, both using it and understand it), and anomic aphasia also known as nominal aphasia (it involves the inability to name objects). There are other types of aphasia as well. Often co-existing with aphasia are the conditions known as agraphia (writing impairment), alexia (the inability to read) and apraxia (a disorder of skilled movements).

What happens in the time frame when an aphasic and his or her family are coming to terms with the loss of easy communication? Denial, anger, depression and finally acceptance that life can and will go on---with or without a bad attitude towards the future. Even this far out from my husband's stroke---his stroke was in May of 2000---we still have a rare, stress-filled day where that stress is generated from communication problems; he wants to tell me something and no matter how hard I wrap my brain around the few clues he's able to get out, I can't crack the code. His daily unprompted vocabulary ranges around twenty-five words. Humor, we've found, is the best way to deal with aphasia. Sometimes it's the only way. A lot of funny things happen on way to learning to live with aphasia in the family.

Insurance never covers enough therapy for people with aphasia. We were luck to find a college near by that has a speech pathology department where future speech therapists work with people from the community. My husband goes to one group and one individual class a week when the college is in session. To be around others with similar problems and to learn as the students learn has been a blessing for both my husband and me. His prompted vocabulary still improves in the length of time it takes to pull words out of his head.

I was observing Don's group speech class last week when a new client was trying to say something about a photograph in front of him and all he could get out was "Yes, no. Yes, no." I leaned over to his wife and told her that Don does that "yes/no" dance all the time, too. She whispered back: "Doesn't that just drive you crazy! I'd like to bop him over the head when he does that." I laughed. I've been to Crazyville so many times I've put a down payment down on a condo. ©

You can find my new blog at The Misadventures of Widowhood and I have another blog dealing with aphasia at: From the Planet Aphasia

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