March 3, 2010

Word Count in the Land of Aphasia

The sun is shining; my husband is singing songs with made-up words. He and the dog are both sunning themselves in the strong light filtering through the windows in the dinning room. Hopefully, the snow will melt this week and spring will flirt its way into our lives.


It’s been a long winter and a long time since I’ve cataloged all the words Don is able to get out in a day. I do it with the changing of the seasons as a gauge of his aphasia and apraxia issues. For years the count was around 25 unprompted words per day. It’s not much higher now if you don’t count repetitive phrases and his songs without real words. He’s good at both in these days nearly 10 years post-stroke.


A couple of hours a day he sings his moods in syllables like: la-la-la, bom-bom, dedum-dedum, woo-woo-woo over and over again to melodies that are sometime recognizable but usually not. I call it his Celexa Happy Hour. Yesterday we ran errors plus got haircuts and stopped off for lunch and everything the hairdresser or waitress said was greeted with a song. A happy song that made us all laugh. As I often do at times like that I joked that I need to cut Don’s anti-depressants down. Not that I'd actually do it. Singing is so much better than crying and those of us in the aphasia community all know a few stroke survivors who can’t stop the inappropriate tears.


Here’s the list of Don’s unprompted vocabulary from yesterday:


Oh man! (Said 23 times; one of Don’s favorite phrases.)

Man! (3 times)

Willy Kins (5 times; a phrase he says often and is suppose to be Gee Willikers.)

Yes (51 times)

No (7 times)

Oops (3 times; another common word in Don’s vocabulary, often used to narrate other people’s mistakes.)

Ten minutes (1 time; he was trying to buy time before starting a sponge bath.)

Five minutes (1 time)

Oh Shit! (5 times; and it has several meanings from happy to outrage.)

Six, seven, eight, nine (Said 6 times. He counts the number of tries it takes him to get up from his wheelchair to transfer to the car, toilet, lift chair or the bed. One through five is often counted silently in his head.)

What? (23 times; occasionally said with humor when he gets caught doing something he shouldn't be doing, but usually it’s a hearing issue that makes him say it.)

Hamburger (1 time)

Come over (2 times; Don asks everyone he meets to come over---this time it was our insurance agent.)

Signs, signs, signs (2 times; theses words are used to with gestures to describe Don’s collection hanging on three walls in the garage.)

Teaks? (1 time. Suppose to be antiques. This is what Don says when he wants to know what channel Pawn Stars or American Pickers is on TV. His latest favorite shows.

Dog! (2 times. He wanted Levi to come help him get his socks off at bedtime.)


That’s it----one day’s worth of 'conversation' with a person with severe aphasia and apraxia. But those of us who live with someone with a language disorder know a word count only tells half the story. The other half is the gestures and endless games of ‘Twenty-One Questions’ we play. Enough already, I sometimes think at times like that, my brain hurts! But of course I don’t say that because some words are better left unsaid, especially on the Planet Aphasia. ©

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7 comments:

Aphasia Conference said...

Hello,

There will be a conference in September in Sydney, Australia for people affected by aphasia, their families, friends, caregivers and professionals.

If you or any of your readers are interested, please visit www.aphasiaconference.com.au

Thank you

Steve

Jena said...

It's always interesting to take an inventory of words and phrases. I'm a Speech-Language Pathologist in Boston and find it interesting what words people mean to say vs. what words just come out. I worked with a man a few years ago who could only say "coffee" for years... and the poor guy didn't even like coffee.

I wish you and your husband the best of luck!
Jena


www.CognitiveRehabTherapy.com

gugge1 said...

I find it so interesting in the words my husband comes up with sometimes. His very favorite combination is "Yes but No". He says that a lot. I'm never sure which it is so we start the 20 questions until I get it right. I've never thought to catalog his word count. It might be a good idea sometime. He doesn't sing at all but shakes his head all the time. I do find that he's getting more comfortable in speaking to people. He even ordered his own food the last time we went out.
It still amazes me how expressive his face can be when he's trying to find the word he wants to say. I can tell at night if he hasn't said much during the day because it takes longer to find the words. Patience is something I never knew how important it was to have but I do now. We just keep trying to communicate the best we can. Take care.

The Aphasia Decoder.... said...

gugge,

My husband says "yes, no, yes, no" a lot too. I've come to the conclusion it means "you're close to figuring out what I'm trying to say, but you're not quite there yet."

Chartreuse said...

It's been a while since I visited your website, but now that I'm blogging regularly myself at Doonan diddly-squat, I've added your site to the list of 'Blogs I follow', and will be sure to come back here often for inspiration.

My husband was diagnosed with primary progressive aphasia in 2006. Since then his communication abilities and some other functions have declined steadily, made worse by difficult surgery last year. But his spirit remains positive and he works valiantly to offset the damage in his brain as best he can.

It's so heartening to read about your coping strategies and see strong evidence of the positive attitude, good humor and fighting spirit with which you both tackle this formidable adversary.

I, too, often feel I live on a different planet from everyone else. Many thanks for your blogging efforts. The planet is a less lonely place because of people like you.

JUDITH said...

How nice to have landed on your planet. Thank you for the well- written, valuable information.

Our daughter/friend/helper didn't wake up the morning of December 1, 2009, so I've retired to care for Bob 24/7. Currently taking a break from blogging, I plan to return and would like to include your blog as a resouce on my site.

Although Bob has no real speech problems, he does have some "favorites," including "Oh Man," which evolved from now rarely used (when I can hear) "Oh shit."

Linda and I used to tell him that if he didn't quit, we would park him on a street corner with a sign saying, "Excuse me, I have Tourette's."

Thank you again for your comments!

jbean said...

My husband when ask to respond yes or no does the yes no. I confirm the by repeating his response and he usually more that 50% of the time changes his answer. I never thought of counting but I'm going to try it.

Thank you, remembertolaugh, Jeannie