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

Things in my head

March 24th, 2019

Just a few things that go through my head on an average day.

Does anyone with MND just sit and think there has to be more to life than this? I mean is that it, the finale, like the end of a great series with a naff ending. Seriously  like good night auvoire.

I mean really sitting in the same chair every day till you die.  Despite being really active, I get these thoughts , being driven around I see people of all shapes and sizes, I think take care of the body you have  because your freedom isn’t guaranteed no matter how much you think it is.

I think about the endless possibilities that technology could give us, maybe we already have the idea, I am positive if you can think it you can do it. Robocop springs to mind and that was 32 years ago.

I often think about how the world works, how does it know to change from winter to summer?  What dictates the temperature in the season you are in?  Don’t get me wrong I expect most people will know the answers, I could look it up on the very pc I am using now.  I choose not too because most of things in life are better when you work for them. It was once said by Dell Boy “it’s not the spending it, but the thrill of trying to earn it that is the fun” not exactly a comparison with Churchill but hey.

I find the most bizarre thoughts floating in my head.  Like personal care, you’d think getting naked in front of a carer would be the hardest thing?  Err no, teeth brushing, yep getting my teeth cleaned.  Most people will have never experienced this; it is virtually impossible to not look into the other person’s eyes and at that distance unless they are your wife say it feels incredibly awkward, so I use the mirror to inspect the back of the loo or the two wonky pictures on the same wall as the toilet. That reminds me I must ask someone to strengthen them.

I feel myself been tawn between using my own voice or my synthetic voice, the synthetic voice sounds as I did five or so years ago.  The reason I can’t make my mind up is due to time?  Let me use a recent situation to explain.  My step daughter and her husband have recently moved to a new pub and were having an opening night, please note it’s 100% accessible with a disabled room which Liz and I tested out.  It has become impossible for me to go anywhere within a 50 mile radius of home with out been spotted, even wearing sunglasses doesn’t help. But because of this I get all manor of questions, normally what is your next challenge?  Well due to the time it takes to write the answer they have either given up and left or predicted what you are typing which is a bit like making a cake for someone to come along in the night and finish it off, basically a right why did I bother.  Or try to talk it so they can understand me, I clearly can spell the words out, well mostly, but the pronunciation of certain letters is an issue.  This was very evident one day while my carer Thelma and I were setting up the Amazon fire stick, the password required an F in it, so I said F, Thelma heard V, I said F she heard B, this went on for a minute before I said no F for fucking, luckily for me we get on really well and she didn’t take offence but she knew what I meant. So if anyone has a better method then feel free to let me know.  Hence I try to avoid these situations.


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