WHEN I 1ST STROKED, I COULDN’T MOVE AT ALL, SO I DIDN’T SIGN—I BLINK-SPELLED: I’D CLOSE MY EYES & SOME1 WOULD SAY THE ALPHABET, & I’D OPEN MY EYES WHEN THE NEXT LETTER WAS SAID: (4 EX., IF I SAID “GO,” SOME1 WOULD SAY THE ALPHABET W/MY EYES CLOSED, & I WOULD BLINK AT “G:” THEN THEY’D SAY THE ALPHABET AGAIN W/MY EYES CLOSED, I’D BLINK ON “O.” THERE WAS NO WAY 2 INDICATE A SPACE, SO THE INTERPRETER HAD 2 FIGURE THAT OUT—WHICH MEANT THAT MY LETTERS WERE OFTEN WRITTEN DOWN, SO THEY COULD SEE THE WORDS!) SO, SAYING ANYTHING TOOK 4EVER & WAS A BIG DEAL!
MANY PEOPLE USE A LETTER BOARD (LIKE THE ONE PICTURED), SO THE ENTIRE ALPHABET ISN’T REQUIRED (THE STROKE SURVIVOR CAN BLINK IF THE LETTER IS IN THAT ROW), BUT SINCE I HAD DOUBLE VISION, I COULDN’T SEE WELL ENOUGH 2 DO THAT.
ANOTHER ADAPTATION, ONCE THE STROKE SURVIVORREGAINS SOME MOVEMENT IN A HEAD OR ARM (NOT A LOT IS NEEDED), THEY CAN HAVE A STICK STRAPPED 2 THEM, & POINT 2 THE LETTERS.
ALSO, I HAVEN’T USED IT, & I’M SURE THAT AS OF JAN. 2011 IT’S SPENDY, BUT THERE IS A MACHINE THAT CAN READ THE LETTERS THAT U THINK!
OTHERS HAVE DESCRIBED BLINK SPELLING MANY WAYS:
1. We created a board for my father when he was able to move only his eyes vertically (he later recovered movement from the neck up). It was a white board, the kind you can use dry erase markers on and wipe clean. We made 6 rows of information, containing the alphabet and numbers. The first row was A-D, the second row was E-H, third was I-N, fourth O-T, fifth U-Z, sixth 0-9. In this way, each row of the alphabet began with one of the five vowels. We used stick on letters and numbers to create the rows. It looked (roughly) like this:
| ABCD |
| EFGH |
| IJKLMN |
| OPQRST |
| UVWXYZ |
| 0123456789 |
| Hello |
The process of him communicating with us went like this: We would hold the board within his range of vision and ask him to indicate the row the first letter was in by looking up when we got to that row. Then we would ask him to look up again when we got to the letter in that row. So if he wanted to say “Hello”, we would point slowly to first the A row, then the E row. At the E row he would indicate yes. Then we would point to the letter E, the letter F, the letter G, the letter H, and he would indicate yes for H. Then we would take a dry erase marker and write the letter H on the bottom half of the board, and begin the process of scanning rows and letters again. It is a very time-consuming process but I think for a patient in this condition and for the family and friends it can be a really rewarding method of communication.
2. From my son’s website:
While in the ICU, my family would go through each letter of the alphabet and I would look up when they got to the letter I wanted. Quite time consuming, but at least I could communicate.
Now, I prefer using a see-through board with the alphabet on it. The person using it looks at what letter I am looking at.
Or, I can use what we cal AEIOU. Say I wanted to spell “josh”. Someone would say “a…e…i-” and I would look up to indicate it’s in the i “row”. Then they say “i…j-” and I would look up to indicate “j”. Then they start over. “a…e…i…o-” look up. “o-” look up. “a…e…i…o-” look up. “o…p…q…r…s-” look up. Etc.
2b. I made Josh’s letter board from a piece of clear plastic I got from a craft store, and stick on letters (also from the craft store). Then I watch Josh’s eyes, to see what letter he is looking at, and said that letter out loud. It works well.
Talk with a Rehabilitation’s 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, or computers that track eye movement, and lots of other helpful tools.
3. Communication……….that’s a difficult one. You may think that communicating with someone who doesn’t talk, move or have any facial expression is impossible – well not quite. In the early days I could Picture of the alphabet I use only open and close my eyes, but that was enough. Odette (my wife) would read the alphabet and when she read the letter I want, I would close my eyes. To make things a bit easier we used the alphabet in a different order…….rather than “A B C D E F” we used “E T A O I N S”. This is just the alphabet in a different order, and the order is the most commonly used letters in the English language. As you can imagine this method is quite slow but it can be used if you can only move one part of your body – be it eyes, mouth, finger or whatever.
The letters were printed on half an A4 sheet and a friend laminated them and have been used for the past 4 years. Over these years the obvious defects of this “card” were noticed and soon I will make new ones – the obvious first problem is the lack of numbers………when I want to say a number, I have to spell it. Also, in today’s age a very important symbol is the “@” and the full stop, so these will be added in the next cards.
Nowadays that I can move my head it is much easier – I put on my glasses with the laser and I spell out the word I want to say by simply pointing the light at the letters. With this method the order of the letters is now irrelevant and they can be in any order and in fact I will probably use the same order of the letters on LUCY.
Which brings me to the voice module of LUCY…….this is attached to LUCY and I can spell words and the module will speak them out. The whole setup uses some clever software and even numbers will be read out correctly……..let me explain : 123 will be read as “one hundred and twenty-three” and 12345 will be read as “twelve thousand, three hundred and forty-five”……neat. The important thing is to remember to spell words phonetically – and remember that the module ignores capitals and punctuation.
Recently (Feb. 2005) I contacted the designer of LUCY and found out that there is a cable (the c7) that enables LUCY to be powered off the voice module and not the PS/2 plug of the PC. With this two macros were programmed to put LUCY in voice or keyboard mode with a single “keystroke”. Unfortunately I did not know about the various optional items available for LUCY when I bought it, but now the designer sent a .pdf file (available here) that lists all the accessories available. When I got LUCY, it came with a 70-page paper manual – utterly useless for me as I cannot turn the pages. So I gave it to a friend who scanned it and then gave me the scans to see on my PC whenever I wanted. When I contacted LUCY’s designer he sent the manual in .pdf format and if you want to read about it or you need it, it’s available here. In case you don’t have the Adobe Acrobat Reader, get it from here.
At first we also used a letter board, but at the moment my brothers prefer it if we say the alphabet by breaking it into sections, is it A to L or M to Z and also asking if it is a vowel, you will also find that the more you do it the quicker you become at working out what they want or need.
4. There are a few different methods of using eye movement to communicate available. My best friend, Dan, has been locked-in since the end of April and his family and friends use a speech based method of communicating. Dan couldn’t control his blinking enough to use blink once for YES and twice for NO so, he looks up for YES and closes his eyes for NO.
We divide the alphabet up into 5 sections
1- A B C D E
2- F G H I J K
3- L M N O P
4- Q R S T U
5- V W X Y Z
Dan has this chart memorized, but sometimes it helps in the beginning to have it typed out on a piece of paper (keep in mind your sister may be suffering from double vision so you might need to cover one of her eyes so she can focus on the paper until she has the chart memorized). We then go through the numbers and he will look up when we get to the row that contains the letter he wants.
So, lets say he wants to tell us his foot itches…
We start “1…2” Dan looks up
then “F” Dan looks up
ok, the first letter is F
start again “1…2…3” Dan looks up
then “L…M…N…O” Dan looks up
ok, second letter is O
start again “1…2…3” Dan looks up
then “L…M…N…O” Dan looks up
ok, third letter is O
start again “1…2…3…4” Dan looks up
then “Q…R…S…T” Dan looks up
ok, fourth letter is T
so, now we have spelled “FOOT”
and you just keep going until you have a phrase or sentence, 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.
5. After my sister got better I got her a laptop with a wide screen and key board with big letters so she could communicate with us that way. There is no telling what is going on in her head that she cannot tell you.
6. My sister is going to be trialing a “Tobii” (laser eye communication/computer device) in a couple of weeks.
7. Here is some helpful information on LetterBoards. This is the kind we use for Josh.
Facing each other, with the transparent LetterBoard in between, hold the board so you can see each others eyes. The person holding the board watches the eyes of the BSS/LIS survivor. Be sure to hold the panel so that the user can comfortably see the letters without undue neck strain. The user looks at the first letter of the word desired and keeps his eyes on the target. Watch their eyes, if necessary you can move the board until their eyes line up better with your eyes in an attempt to figure out what letter they are looking at.
The communication partner will check with the user to see if he has identified the correct letter or number by naming it aloud. The user will indicate “yes” or “no” using whatever means is understandable to the partner or whatever mode has been agreed upon, like looking up for yes, and down for no, or looking at the yes/no printed on the board, etc.
Have a pen and paper available to write down each letter of the message is necessary. Do this for each letter, and communicate verbally throughout, making sure you have the correct letter. You will be able to guess what word they are trying to spell, thus most words are not spelled out completely, especially once you get the drift of the sentence. This may seem tediously slow, and it can be at first, but it picks up quickly and is an efficient way to allow the BSS/LIS person to share their thoughts, ideas, concerns and worries.
That’s it. Give it a try.
We had some humorous spelling conversations, where letters got jumbled, or the end of a word wasn’t clear. Once Josh spelled this to one of his carers, “run for rest, run”. The carer couldn’t understand what he meant, that she was suppose to run for rest. It didn’t make sense to her. What he meant was referring t o his leg braces, “Run Forrest, Run”. In the movie Forrest Gump, there is a line of the same.
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, and when that word is a “dirty” word, the uncontrollable laughter ensues. Like “pen is blue”.
8. I have used and still use the letterboard and some essential additions are the “@”, “.” (dot) and “?”. As regards the first two, try spelling an email adress without them…..
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” !
Finally, I “point” at the letters using a laser mounted on my glasses. When I am on my wheelchair, it is powered from the chair’s battery while in bed I use a small mains adapter.
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 HER HEAD THAT HE/SHE CANNOT TELL YOU. THERE ARE SO MANY STAGES TO GO THRU BEFORE YOU SMILE AGAIN, IT’S HARD FOR ALL OF YOU. BUT DON’T LISTEN TO ANYONE JUST DO ALL YOU CAN AND CARRY ON. NEVER GIVE UP. IF YOUR BREATHING, I BELIEVE YOU HAVE A PUPOSE FOR YOUR LIFE.