Making memories for our young family as we live with Motor Neurone & Fabry's Disease

Jason’s latest offerings

June 13th, 2016

Well a week has passed since we came back from Disneyland Paris and we are back to normal, well normal as can be .we had an absolute fabulous time despite the weather ,mainly raining for most of the time, but we didn't let this dampen our spirit.

We managed to get on all of the rides we wanted to including myself, even if on some occasions this meant me been manhandled by Liz and my step daughter Emily oh and not to forget a few other very helpful tourists on the way. As per normal I went on all the Dangerous rides and it would seem the girls that are taking after me by going on the Toy Story green soldier parachute ride.
We drove there and back using the Eurotunnel which was a new experience for all of us; however I wouldn't recommend needing the loo if you are disabled especially if you are in a wheelchair as access is impossible. I drove all the way there comet over two days but was fine however on the return journey my feet swelled up and it was my turn to set in my Wheelchair and be driven. It was a great experience and Disability access was reasonable and more importantly we make lots of memories and pictures.
Over the last two or three weeks my ability has weakened further in the area of transferring from Wheelchair to bed / toilet and also my wrists Have Become weaker meaning it is virtually impossible to feed myself with a spoon and fork , I can still manage a simple sandwich just. I suffer with quite a large amount of mucus build-up but through the cough assist and suction machine I managed to deal with it.
Again over the last weeks using my mobile phone has become very hard and frustrating and therefore starting to use the eye gaze to do more and more this is a steep learning curve But one I will embrace as I love technology and will continue to do my updates and Facebook etc as long as I can.

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