Friday, March 27, 2009

Communication: One letter at a time

Jimmy had plenty to say after his debilitating stroke, but there was no way to say it. As time passed, he was able to share many thoughts despite the loss of his voice. He improvised with the help of speech therapists and well-intentioned friends and strangers.

Codes are often used to send secret messages. Prisoners of war in Vietnam used a language of knocks to communicate with one other from their cells.

"It sounds like that," Roy Hamby, the manager for the Georgia Department of Veterans Service office, rapped out a few knocks with his knuckles on his wooden desk. I was in his office to discuss services available to Jimmy, a Gulf War veteran. "That's how they talked."
"He can't move," I said grateful of the helpful information, but tried to explain again that Jimmy was completely paralyzed, "but I'll check into that."

While everyone I met offered helpful solutions – from e-mail and instant message chat abbreviations to Morse code – Jimmy was working directly with professionals at Shepherd Center in Atlanta, Georgia.

Jimmy didn't need a code to break into a safe or convey some top secret message. He needed one to share his words and himself with the world. A debilitating brain stem stroke robbed him of his ability to speak and move.

While thankful his brain was spared, it was frustrating. "How do I make them understand?" he would spell to me after he described how the nurses guessed what they should do. By not asking for Jimmy's input, the medical staff was just hoping they figured out the right course of action. It was a recipe for failure and totally unnecessary, because Jimmy was right there. They could ask Jimmy, but they just needed patience to wait for his response.

Jimmy was unable to communicate for weeks after the stroke. One day, a blink opened up a world in which he had once walked and talked. He blinked twice for yes and once for no. The blinks eventually morphed into a look up for yes and a look down for no.

At Shepherd, the therapists immediately began experimenting with a couple of low-tech communication methods like a Before M method. A person recited the alphabet slowly from A to M. Jimmy blinked when you reached the letter he wanted to say. If it was not a letter Before M, the person recited letters from N to Z.

Asking yes or no questions was a simple way to communicate that became complicated quickly. "Jimmy do you want to get in your wheelchair or stay in bed?" He would stare blankly at the questioner, because he couldn't answer with a yes or no. On a good day, the aide realized the mistake and broke the question into two parts. She would pause to give Jimmy time to answer the first one before moving onto the second one.

Jimmy’s blurred and double vision made it impossible to use a communication board, which included the alphabet in squares. I could point at letters all day, but Jimmy of couldn’t see what I was pointing at. The same happened when we tried a computer program through Neural Signals (http://www.neuralsignals.com/). Dr. Phil Kennedy was a gem. It is an excellent program and has been very successful for others. Jimmy's vision problems hampered his use of the system.

Another method involved a Dynavox. It essentially gathered dust, because it was cumbersome to use. It probably could have been better used in a home setting. It was not a good fit for the first nursing home in which Jimmy lived. Some staff feared breaking the equipment and others didn’t want to bother hooking Jimmy up to it.

The crown jewel in Jimmy's arsenal of communication devices was an auditory scanning system he devised one Saturday with a speech therapist. It was low tech. Jimmy didn't need a computer to communicate. He needed a willing partner – a human speller.

When Jimmy wanted to talk, he blinked rapidly. It signaled that he wanted to spell. Then, the series of questions began.

"Is it a vowel?" Jimmy answered yes or no. If it was a vowel, then I recited the vowels: A E I O U Y, until Jimmy blinked. I wrote down the vowel. Then, repeated the process asking, "Is it a vowel?" No. Then, I offered Row 1, Row 2 or Row 3.

The system appeared complicated. It was intimidating to some. We considered ways to streamline it, but it worked. Jimmy never changed it.

When Jimmy and I did a “show and tell” demonstration of how to spell, Jimmy would often spell “Hello.” While it would have been easy to spell “Hi,” Jimmy never took the easy way out. He spelled out the entire word, so the guest could understand the complexity and simplicity of this spelling system.

All the people who were locked-in – whether by a brain stem stroke like Jimmy or someone who had Lou Gehrig's disease or Amyotrophic Lateral Sclerosis (ALS) – led the way to help Jimmy communicate. Each person and each speech therapist added to the dialogue on ways to communicate when one’s voice just didn’t work.

A chart of Jimmy's spelling method followed him everywhere. It was placed squarely over his bed at the nursing home or in the hospital. Smaller versions were printed on laminated business cards, so nurses and aides could keep it with them. Postcard size versions were available for visitors.

Following Jimmy's stroke, his words were precise just like they were before his stroke. The spelling system lacked personality as inflection and emphasis were absent in the string of letters. Words were sometimes garbled. The letters mingled together. It was fuzzy sometimes where one word began and another ended.

The spelling method cracked an all important code for Jimmy. It was the key to communication. It allowed him to communicate both powerful and trivial messages. It allowed him to speak without a voice.

The chart is pictured above. A key direction is at the end: Be careful about guessing. A lot of wrong guesses often leads to frustration for both the speller and Jimmy.

Jimmy wasn't very tolerant. He wanted his conversations to be free of guesswork. He had had enough frustration elsewhere in his post-stroke life.

7 comments:

  1. Wow, this was quite an elaborate system of communication. I'm impressed with your patience with Jimmy in your advocacy of his care. Although it is understandable that he seemed a bit grumpy with his circumstances,did he appreciate all of the hoops people jumped through to help him get his needs met?

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  2. Thank you for sharing this link with me. Well explained!

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  3. This system worked very well for Jimmy. Thanks.

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  4. Stacy, I am so proud to call you friend. You are an awesome woman. :-)

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  5. This was such an interesting post. Last year, I saw the Dr. Jill Bolte Taylor TED talk about surviving a stroke. I then bought and read her book, My Stroke of Insight. It was a fascinating read and really gave me a look into what it is like to have a stroke.

    I think it is really cool that you guys were able to figure out a way of communication for him. It had to have been so frustrating not to be able to say what he wanted to say.

    Robyn is right, you are awesome! I am so glad to have met you this year. Thanks so much for sharing such a personal experience.

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    1. Thanks Loni. I've seen part of the TED talk with Dr. Taylor. I read books from Locked-in Syndrome patients while Jimmy was alive to see if we could learn anything to help him. When I decided to write a memoir, I decided not to read stroke books so it didn't cloud my writing.

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