Setting The Scene Part One

Right sorry about that, had to nip off.

I think the best thing to do is to tell you a little bit about me, who I am, where I come from, etc

I'm 31 years old. I live in a town called Wath Upon Dearne in South Yorkshire, England. I'm 6 feet 4 inches tall, weigh approximately 18 stones. I have brown hair (well what's left of it!) and brown eyes.

And as you have found out already I have a muscle wasting disease called SMA (i'm not going to continually type it out as it's a pain in the arse) Oh yes this blog will contain some foul language but hopefully not too much!

Before I go on I feel I should establish some ground rules about what this blog is and what it isn't

What it is is a journal of my experiences of life with a muscle wasting disease and how it affects day to day life.

What it isn't and what it hopefully won't be is a rant against the "system". Yes there will be a lot of constructive criticism and the odd nasty remark but hopefully it won't be a descent in bitterness.

Another thing is that there will be no names mentioned. This may sound odd but I don't want to be accused of libel or slander (I am a journalism graduate so i know how to avoid this).

Ok with that in mind I'll begin.

I grew up in South Yorkshire in the 1970's and 80's. By all accounts I was a typical rumbustious kid. Climbing everywhere and getting into every single nook and cranny (never understood that phrase). One story that is retold ad infinitum is how I as a kid once pulled down a scolding hot cup of tea on me by clambering up a glass topped table and not getting a mark.

It was from the age of two that my parents noticed things starting to change. It was little things that first attracted attention. The fact that I couldn't tie my shoelaces was the first sign. No matter how hard I pulled the laces together the damn things wouldn't stay together. To my eternal shame I didn't learn to tie my shoelaces properly until the age of 10. Even now it can be a tour de force which is why I tend to wear trainers with velcro straps or rather I would be if i had a pair.

Other little things started to materialise. My hand-eye co-ordination was shot to pieces. My balance was off and I didn't learn to speak properly until the age of three and that was due to speech therapy. The story I was told recently was that i went to speech therapy because some doctor thought that because i couldn't speak I was deaf!

But the first real sign that something was seriouly amiss was the fact i walked on tiptoes. Now that at first wasn't a problem because it was a family habit.

However looking back now with 20/20 vision I know this was the first hint that all was not well. Any attempt to put my feet down square on the floor resulted in severe pain in my hamstrings and the only way was to go back up onto tiptoe.

Of course things like these soon became noticed and as kids tend to do they react in the worst possible ways. Without going into detail I was picked on something rotten. It's not easy for me to talk about and I'm sure you will understand if I don't dwell on it too much.

As you can imagine my academic ability suffered because of this and also because of the immense time off due to illness. Every cough and cold seemed to last for an eternity.

Growing up wasn't easy and it got a damn sight worse when I approached the time to go to comprehensive school. When I was 10 years old I underwent a proceedure to correct my tiptoe walking which was to encase my legs in plastercast (not to break them) in order to force my feet down.

It did that but not just that. I went to the comprehensive school in 1989 and that's when the problems really started.

But that's for another time