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

I lost my way

October 10th, 2019

I wrote this a few days ago and have deliberated about it , oh well here goes.

In my last blog post, I touched on the fact that communication on holiday was hard. It was virtually impossible at some times and this had a massive impact on me.

I lost my way for a few days, by that I mean I could have given up the fight. I have up to now always been able to make myself understood in one way or another, but perhaps due to the heat my voice wouldn’t work at all.  So I have communication aids, but the infrared sensors on the grid pad  were unable to function due to the sun, I have a switch set up which would work , however as with my phone it was impossible to see the screen , so hence no communication. I became isolated temporarily during the day time, first thing was ok as was night time.  During the day there is so much I see that able bodied people don’t. getting in the pool, playing in the pool , teaching sons and daughters to swim , throwing them in the water, going down the slides, playing on the beach, going on banana boats , dancing and joining in with activities and shows on an evening.  All this becomes nearly impossible to deal with, because you are on holiday, normal day to day life I can cope with but not when it is there in front of you constantly. My wife doesn’t have the husband she married and my children don’t have the father they deserve.  This plays on my mind a lot, there were tours they could have gone on but I couldn’t go.  I don’t want them to miss out because of me , I don’t want to miss out either , no matter how much tech you throw at me it will never be as good as a human can be , we are the most advanced machine on the planet , no machine can do what we can. So what happens next?

Believe it or not I saw a link on face book for the benefits to dandelions, vitamin c and helps fight some kinds of cancer. This then lead on to an article about a man on nurown, he had shown promising results.  Now I am always sceptical about these reports, but I know the Americans are pushing for the drug.  However putting this drug aside, I believe that sometime in the very near future something will stop als/ mnd in its tracks, maybe not a cure but something that will give the most amazing machine on the planet a fighting chance, the human body.  We are amazing and with the ability to repair itself.  No body knows whether a human can come back from this because no one has had the chance , we live in excitement times, for once in a long time I feel my future isn’t set.

I sat and looked at my amazing wife and beautiful children and thought, I might not be what I was , but who can stop me trying to be that person again? I owe it to my family to try and achieve the impossible.  This is by far my biggest challenge.

I turned a very negative situation in to a positive; people come back from comas, paralysis and horrendous situations, so with a little help from science and technology who knows what can happen. The only way I give up is when I die. I will be back.

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