Locked-in Syndrome

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   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 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 alphabetical order.

Since writing the above, new cards were made - available in .pdf form here.

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 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

Finally, people ask me why I don't use a system like Stephen Hawking. Well, what you see on TV is not in real-time : he uses a system called scanning method in which the computer goes through the letters and when it reaches the letter he wants, he operates a switch with his cheek. When a sentence or paragraph is complete, a text-to-speech program reads it out. Anything you see on TV has been previously written and is read and talked by his computer when needed. Having said that, apparantly he is incredibly fast when using this (very slow) system.

Originally he used a thumb operated switch but, due to lack of strength, he now uses a special, infra-red switch operated by his cheek. At the time of writing (Dec. 2014) he is collaborating with Intel on some new software to allow him to use his computer more easily. Once tried and tested, the software will be open source - ie freely downloadable by anybody and can be improved or modified by anybody.

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