Over the weekend I had plenty of time to think and I think I have come up with something VERY IMPORTANT. A way to communicate when I am no longer able to use traditional methods but one which work if I can find any reliable way to signal a number from one to five: a squeeze, finger, tap, blink, eye movement, grunt, nose twitch or anything else that works. 

After two incidents with my eyes this week, together with previous times when I have struggled to talk properly, I found myself thinking about one question:

What is the simplest possible way to communicate when speech, typing, pointing or even vision become difficult, but understanding is still there?

My answer is a 5×5 system.

The idea is simple. I find any reliable way to signal a number from one to five: a squeeze, finger, tap, blink, eye movement, grunt, nose twitch or anything else that works.

The five signals are:

1 = YES
2 = NO
3 = PROBLEM
4 = I NEED SOMETHING
5 = HELP ME WITH SOMETHING

Yes and no are at the centre. The other three signals simply tell the person helping me where to start, and then yes/no questions do most of the detailed work.

The second “5” comes from what happens next.

Each of 3, 4 and 5 can open up to five simple choices.

So if I signal 3, for example, the choices can include an emergency, severe pain or medication, a PSP-related problem, another physical problem, or a non-medical problem.

If I signal 4, it might mean a drink, food, toilet or personal care, rest, or another need.

If I signal 5, it might mean TV or music, prayer, my phone or iPad, contacting someone, chess, hobbies or something else personal to me.

And the whole thing should be personalised.

The person helping also only needs a very simple process: check how I am signalling yes and no, ask one short question and wait, then confirm what they think I mean.

I have no idea yet whether this is genuinely useful or whether I have simply spent Shabbat reinventing something that already exists.

But it is simple, it makes sense to me, and strangely it makes me feel calmer.

I have created a guide and my own card as an example for people to see. Now I need feedback. I am going to test at home and have already asked people and checked if other things exist….and will continue to hunt before finalizing and issuing a free template. See below….

and my own 5*5 card to see a real example 

Is the 5×5 idea useful? Where will it break? What have I missed?

If people think there is something here, this may become my next project.