Wednesday, 3 October 2012

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My Mum was told I had Duchenne Muscular Dystrophy on 26th October 1989,

She will always remember that date, not only because she had just found out that I was terminally ill, but also because it was her 35th birthday and she had been planning on going out with my Dad that evening for a meal; so my diagnosis rather put the dampers on that!

To say the proverbial hit the fan that day was putting it mildly for all sorts of reasons. I was 2years and 11 months of age, my brother Roger was at home aged 1year 8 months and my Mum was nearly 3 months pregnant with another baby.

Mum and Dad had been married for 8 years before I was born, then they had me (forgot to say I’m Martin ) 15 months later they had Roger and then Mum got pregnant again with a third child, so it was 3 children under 3 and a quarter years! Talk about MAD, but as you will find out if you keep on reading my blog; Mum is basically barking mad and Dad tends to generally go along with her.

 Always wanting an easy life!

So, back to my diagnosis; Duchenne Muscular Dystrophy (or DMD as I shall call it) only affects boys, I won’t bore you with the genetics. So as my Mum had another boy at home and was pregnant with who knows what it was a bit tricky all round.

Perhaps I’m getting a bit ahead of myself so I shall go back a bit.

Mum ended up getting this rather iffy news, because, as usual she couldn’t let things lie. Roger, my younger brother by 15 months clearly was ahead of me physically (not mentally I hasten to add) he found walking, climbing, running etc easier than I did. Mum was worried about this. She was a lecturer by trade and worked with and taught others about physical disability; in fact she had done her dissertation for her degree on attitudes towards disability and you have to remember that she is VERY old, so this was all very different than it is today, no Paralympics and positive attitudes. So anyway, she knew lots about disability and really felt things weren’t right with me.

So she pushed and pushed at the doctors (you will come to realise that my Mum got very good at this!) until eventually she got an appointment for me at the local Child Development Centre. I had to go for 2 days of checks for everything, top to toe to see if they could find if anything was going on.

On the first day, Wednesday 25th October we went in to see the main Doctor who was going to oversee all the tests and the first one was with him!

Just about the first thing he did was to get me to lie down and then get up, which I did in my usual fashion which I thought was quite fast, but it seemed to worry the Doc who promptly announced that he wanted to take a blood sample from me and send it off for tests; at this Mum got worried as she smelt a rat (you will find out as we go along that she really is a bit of a witch!). Any how a nurse was summoned and asked to stick a needle in my arm and get some of the red stuff out of me, the nurse remonstrated saying she didn’t like to take blood saying it would upset me and I then would not be happy to do the rest of the tests that were in store for me over the next couple of days. I was with her! I didn’t fancy the idea of being jabbed with a needle, but Doc was having none of it; so the deed was done. I was VERY brave and then carried on with the rest of the tests; hearing, cognitive skills (I was dead good at those) drawing etc. until at the end of the afternoon we were told we could go home (phew) and come back next day for the rest of the tests.

Home and cheesy scrambled eggs for tea (yum). Mum spent a lot of the evening looking in her college books on disability (google hadn’t been invented yet, I told you she is very old!)

So next day on her 35th birthday there we were back at The Child Development Centre.

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