You may think that communicating with someone who doesn’t talk, move, or have any facial expression is impossible – well, not quite. In the beginning, I couldn’t move at all, so I communicated by blink-spelling:
I couldn’t control my blinking enough to use blink once for yes and twice for no, so I’d close my eyes (another option is to look up for yes and close his/her eyes for no).
When I needed to communicate, I’d close my eyes, & someone would say the alphabet. I’d open my eyes when the letter was said: (4 example, if I wanted to say “go now,” then I would close my eyes as someone would say the alphabet, & I would blink when they said the letter “g:” Then I’d close my eyes again as they’d say the alphabet again, I’d blink when they said the letter “o.” I’d repeat this for the word “now.” There was no way to indicate a space, so the interpreter had to look at the letters “gonow” (either on paper, or in their head) & figure out what I was saying. Sometimes, it takes a bit of detective work to try to make words out of a chain of letters, and you have to clarify things by asking yes/no questions, but it works.
That’s it. Give it a try.
Many people use a letter board (as pictured & described below) – that way, the entire alphabet isn’t required each time! Unfortunately, I had severe double vision (my vision is not 100% better now, but much improved), so I couldn’t see well enough to do a letter board.
But if you make one, use a whiteboard (you can use dry-erase markers on it and you can wipe it clean). Make 6 rows containing the alphabet and numbers. The first row is “a-d,” the second row is “e-h,” the third is “i-n,” the fourth row is “o-t,” the fifth is ”u-z, and” the sixth row is “ 0-9.” In this way, each row of the alphabet began with one of the five vowels. Use stick-on letters and numbers to create the rows. It looked (roughly) like this:
_____________
1 – a b c d
2 – e f g h
3 – I j k l m n
4 – o p q r s t
5 – u v w x y z
6 – 0 1 2 3 4 5 6 7 8 9
——————
(I didn’t have this when I tried a letter board, but u may choose to have a 7th row with “@”, “. (dot)” and “?” – try spelling an email address without the first 2! The “?” Is useful because very often one spells a question but the “listener” doesn’t notice it’s a question and the “talker” has to spell “that was a question” !)
The process of communicating goes like this:
Hold the board within the stroke survivor’s range of vision and ask him/her to indicate the row the first letter was in by looking up or closing their eyes when they get to that row. Then ask him/her to look up again.
So if he/she wanted to say “hello”, start by saying “row 1, row 2” When you say “row 2, he/she would indicate yes. Then point to the letter e, the letter f, the letter g, and the letter h, and he/she would indicate yes for h. Then take a dry-erase marker and write the letter “h” on the bottom half of the board.
Begin the process of scanning rows and letters again.
We’ve had some humorous spelling conversations, where letters got jumbled, or the end of a word wasn’t clear. Then there will be times when spelling some words allows for some rather interesting beginnings of the words, that may lead you think of the wrong word.
It is a very time-consuming process, but it can be used if you can only move one part of your body – be it eyes, mouth, finger, or whatever. For the stroke survivor, family and friends it can be a really rewarding method of communication.
Once the stroke survivor regains some movement in a head or arm (not a lot is needed), they can have a stick strapped to them/glasses with a laser beam, etc. and point to the letters, or a laptop with a wide screen and key board with big letters
There is software where letters and numbers will be read out loud (123 will be read as “one hundred and twenty-three;” 12345 will be read as “twelve thousand, three hundred and forty-five.”) The important thing is to remember to spell words phonetically – and remember that the module ignores capitals and punctuation.
Talk with a rehabilitation technology department, as well as a speech and language pathologist. They will have all sorts of suggestions for communicative assistance. There are glasses with laser beams, computers that track eye movement or can read the letters that you think, and lots of other helpful tools.
If you have a loved one who is locked in, he/she needs so much love right now. There is no telling what is going on in his/her head that he/she cannot tell you. There are so many stages to go through before you smile again; it’s hard for all of you. But never give up. If you’re breathing, I believe you have a purpose for your life.
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