Imagine, for just a moment, that the person you loved most in the world was struck down with a terminal illness that robs you of your strength, your speech, the abilty to breathe without help and finally takes you out of this world.
Well that’s what Motor Neurone Disease does.
I want you to imagine this as my Dad, Sister and myself saw it happen to my Mum and now along with my wife and children they get to see it happen again, to me, it kills me, it really does.
It’s hard for me, but seeing the people I care for most watch as my body breaks down really is breaking my heart. I try to make light of my bent fingers, sticky out hip bones and protruding shoulders but I know it kills George to see what’s happening to me. I do remain positive and fight this disease every day but I want more people to know about me, also to learn how it affects my family. This is the only way to carry on for the rest of my life and leave my legacy behind.
This disease needs more attention not only here in the UK but all across the world. It’s now down to 1 in 300 people who are likely to get it and there is still no cure or any real idea of why it occurs. More Universities and research centres need the funding to investigate it and those who already do need more.
As I’ve said before most people think that MND only affects the elderly. This thought is wrong, it can attack anyone at any age and if you look on Facebook you will see it attacks young adults and some children too. I was only 35 when I was diagnosed and I know plenty of people younger than me.
We only have one national charity, the Motor Neurone Disease Association based in Northampton. They are doing great work with people who suffer from it and those who care for them. But the fact that there’s only one really is quite shameful. It’s amazing how much they do with such an obviously tight budget.
I hope MND never affects you or anyone in your family but whatever you can do to help promote me it would be a great help, even just sharing my blog with your friends. If you are affected by it I’m happy to talk.