No. 127. Tears and gratitude.

On Saturday Chris's sister Lucille came to visit with her son and grandson. It was lovely for Chris to catch up with them as he hadn't seen them for a while. He was a bit emotional after they left and when I asked why he said it made him think about grandchildren and how he probably wouldn't meet his own and I told him that no one really has that guarantee, especially with Chloe as we didn't have her until our late 30's and that he should concentrate on the things he has, not the things he doesn't. It's tough though...not to dwell sometimes.

Yesterday the physio came for Chris's monthly check up. She agreed with his MND nurse that a seat/ walker would be a good idea for indoors. Chris lost his balance while stroking our dog last night and ended up on his bum ! We had a giggle about it, but I fear he is going to hurt himself one day. The walker will help him keep his balance.

Today Chris had an appointment with the speech therapist to check his swallow, so we collected the seat/walker at the same time. The team also came down from The Dame Hannah Rogers Trust in Devon to demonstrate and assess Chris for speech technology. They showed Chris how to use the Tobi i to communicate, go on line, text etc and how it is all converted to speech. It can be controled with his fingers, with a metal dot above his nose and a camera or with his eyes alone, eye gaze. Chris still isn't very computer literate, but he picked things up fairly quickly. The eye gaze takes practice, they had some simple games for him to play on and after calibrating his eyes to the tablet he was away. Writing text will take a little more time. You can get a 12" tablet or a much larger tablet type of PC. The team will come and see him again after Christmas to set him up with a Tobi i which he can use with his hands for now. It will even be able to work his Sky remote, which he is finding more difficult to use now. They will upgrade to the eye gaze as and when he needs it. 

As Chris has a MS Surface tablet already, they said he can download a free 60 day trial of the Sensory software in order to practice using the actual screen, icons etc, so that when he gets to use the Tobi i properly, the software will be familiar to him. The technology available is amazing and sadly not everywhere in the country have access to it yet. We are grateful to be in the area that NHS England chose to pilot this technology first.

The MNDA are campaigning with the run up to the general election next May, for those with MND not to die without a voice. Thankfully when Chris does eventually lose his voice he will be able to communicate still with the aid of modern technology.

So inspite, of the tears this disease inevitably brings, there is the gratitude too for the help that is available in this modern world. It must have been very lonely and isolating to have had MND years ago.