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

MND awareness month

June 5th, 2017

OK so this month is MND awareness month, so if you didn’t know, you do now.  You might expect it to be awareness day every day in our house, but it isn’t.  Back in 2013 when I was diagnosed, sure as eggs are eggs devastation hit our lives, right now writing this I think how lucky I am that it wasn’t me or somebody I knew caught up in the horrible terror attacks of any recent times or simply any.

After the shock of it all and coming to terms with it, by the way I am more than aware that most of us don’t come to terms with it.  There’s two options you can hate it and let it consume your life, with what I see and read this appears to be the more common option, please correct me if I am wrong. The other option is to roll with it, that’s my choice.  It would be real easy to hate it but the energy that hating it uses is far better spent living life.  Where there is pain there is pleasure.  Pain for me comes in the form of frustration, the simple inability to move, but what surprises me in a lot of instances is the human ability to adapt.  Pleasure comes in many forms, for me it’s time with my family, experiences like new countries, new areas, making photos and videos. Oh and doing extreme things like zip wires.

Amidst all of this is a tiny part of me believing that maybe a solution is just round the corner. We instantly think of a cure, maybe it might be technology! Let’s throw a few things in there, Robocop, terminator or iron man.  So right now you’re either on the floor laughing or thinking nutter. Oh think how mad it sounded to have a conversation let alone a video call with someone half way round the world 150 years ago.  I have learnt several things in life; some would argue that, but never say never and always expect the unexpected.  Simple proof is the government can read your phone screen from space. NASA helped develop a power glove now there are a few on the market.  If tomorrow goes well I’ll be walking again for an hour or so.  Yes you read correctly.

The thought that movement will again be possible is all I need to carry on, so to stay alive with a tool as powerful as a human brain is a must for me.  I have had a lot of the best times of my life since diagnosis and I plan to have a lot more with technology on my side, with or without MND.

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