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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