Right, a proper introduction and hopefully a session to cover some of those things you always get asked when you first appear on the scene, so to speak.
Oh, let me point out from the outset, I am not a professional writer, I make typo errors, the odd spelling mistake and the grammar might not be top notch, but you'll always be able to get the gist of it!
First off, because its the most common talking point, and I'd like to get it out the way, lets talk about my minor inconvenience, muscular dystrophy.
Its not as bad as it may first appear to the casual observer. Yes indeed I have an electric wheelchair, but its pretty good.
Congratulation to Sunrise Medical, their Quickie F55 is pretty good to be fair. I have taken it on beaches and up large mountains in Dorset and battered it around when I have been slightly under the influence of alcohol, and for the last 9 years, it has only let me down properly once, when a wire came loose and left me stranded in the dark and cold of a January night!
But it wasn't that bad in all fairness, I rang the Disabled AA, my reliable repairers, SERCO and within an hour or so I was up and running again! Good stuff!
Secondly, yes I do lean to the left, its called scoliosis, its no biggie, it means the muscles and the bones aren't quite right. It doesn't hurt, it doesn't mean I am and more retarded for not sitting up straight and if gravity wasn't around it wouldn't be so bad! It also spawned my nickname, in certain circles I am "The Bendy Avenger".
Also while we are on the point of my physiology, its odd, but not particularly interesting once you know how it works, so here we go, in fairly simple terms because I am not a doctor and in reality it doesn't interest me that much...
Muscular dystrophy is a general weakness of the muscles, usually it is a progressive disease.
The prognosis for most MD lads isn't too bright, if you have Duchenne then its pretty dire, you'll most likely be dead by 30, sorry but thats the harsh reality of it. All of the other types have a life expectancy from middle age to average, if you are particularly interested you can look at google for the answers.
With all that doom and gloom though, mine is a bit different. The situation might have changed recently, because I was told this about ten years ago, but back then, the consultant, said this to me;
"...we aren't sure what sort of Muscular Dystrophy you have, its all to do with a chemical called merosine, and you are on the very middle of the spectrum, we've found no one else with that amount".
What that meant, after some further explanation was this;
If you can imagine a spectrum 1-10, and at one end you have Duchenne, and the other you have a not so bad type of MD. Then you look at slot 5, and you divide that loads until you are right in the middle of it, thats where you find me.
This is surely a good selling point, I am a genetic novelty, or freak or unique, however you wish to look at it. I don't have a preference! The down side is that no one can give me any clear answers, they said quite flippantly once, "well if you make it past 28 or so we can't see any reason why you won't have an average life expectancy".
Lets all hold our breath around November 2011 eh!!
So yeah, sorry got a bit distracted with the back story there, muscle weakness...
My arms and legs and trunk are all a bit weaker than they should be, I can't lift heavy stuff, I can't move of my own volition particularly well, but with the previously mentioned chair, and my team of PA people, who are generally ace, the world is my oyster.
** note to self... tell the lovely readers about PAs later on! (its an interesting adventure!!)
However with all that said I am not doing too bad!
I am an average type of bloke born in 1983! I like going out with my mates, drinking, looking at pretty girls, going to gigs, and generally being daft. Just because I use a wheelchair doesn't mean my priorities in life change. I still want to grow up have a decent job, get paid loads and have a family and all that sort of thing, apart from my shape and how my body works I am no different to any other average bloke... well except I am pretty clever and have a decent set of morals and social skills!
I am living a pretty productive life, working full time, currently in an FE college, as a lecturer in multimedia and photography, a Multimedia Technician and a Researcher. I live in my own flat, and have a pretty good social life. I get drunk now and then and do stupid things, I look out for the people I like and do my best to help out my mates, I would like to think I am a decent human being!
If you have any questions, please ask, I'd rather you be blunt and ask, rather than make incorrect assumptions, as someone once said, "when you assume you make and ass out of you and me!"
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