Wednesday 21 January 2015

No.142. The eyes are the bridge.

Well today was the day that Ruth and Ryan came down from the Dame Hannah Trust in Devon to set Chris up with a PC tablet with Tobi i software. This includes a special software programme that Chris can navigate and use with his eyes and can then speak for him. It is an amazing piece of technology and sadly not everyone in England can access it yet.

First Chris tried a system whereby you place a silver dot on your nose or between your eyes and you move your head around to navigate the screen pages. Chris found that OK, but you do have a silver dot stuck to your head. They then set up the Tobi i gaze. Firstly Chris's eyes were calibrated to the screen and then he used his eyes to navigate. This was a little more tricky, but he was actually doing really well with it. He had forgotten to put his reading glasses on and that meant recallibrating it again. I think Chris prefers the Eyegaze system, but he has a month to try both to see which he prefers.

Of course Chris is still able to communicate orally, even if his speech is slurry, but this is another thing that benefits from having it before you actually need it. It is going to take a bit of practice to get fluent, but it is one clever bit of kit.

Of course this equipment is on loan and before Ruth and Ryan left they told us we would need to get it insured. They had the costings there and everything in total came to £5000. That is a lot of money and a big responsibility to look after too, but actually, in the great scheme of things, not that expensive, when you think that it gives someone who is cut off from the world a way of communicating again and the number of people suffering from MND generally is very small compared to something like cancer, so I think everyone with MND who needs it should get it.

It does take Chris more of an effort now to have a conversation with someone and I know he feels self conscious sometimes. It is amazing that there is this kind of technology around and once he learns how to use it properly and when the day comes that he can't speak properly anymore, he will still be able to communicate and feel part of everything and that is so important. More importantly he will be able to express his wants and needs, especially ,God forbid, he should have to stay in hospital in the future.

His eyes really will be the bridge from his mind and thoughts to ours. Thank god for modern technology.