Me with my
daughters Carina (10) and Jamila (4)
on my 35th birthday (16-6-98).
At my computer (6-6-99).
I had been working long hours in my Screen Printing
factory getting just a few hours sleep on a old lounge in
the office when I couldn't hold my eyes open any longer. l
had been doing this many times for about 10 years now ever
since I started my own business. I
thought that I'd do all the hard
work whilst I was still young and make heaps of money so
as I could take it easy later on.
Well I sure am taking it easy now, but not by choice.
I've had Motor Neurone Disease for 4 years now and I can't
hardly do anything for myself anymore because this bastard
of a disease has taken the use of my arms and hands away
and It is now trying to get my legs and voice.
My first
symptom was a slight twitch in my left bicep early '94 and
this was followed by cramping of the hands. I didn't think
about it to much until a few months later when I was at
the doctors for something else and I said "Oh by the
way I've got this twitch ". I was sent to a neurologist
and after about 2 months of testing I was given what I
thought was a death sentence. I will never forget his
words "You have a spinal chord disease called Motor
Neurone Disease. There is no cure and you have a very
aggressive form of this disease." He went on to say
I'll be dead in 2 years 3 if I'm lucky or words to that
affect. I pleaded for more time saying "But what if
it just stays in my arms, what if......, what
if....." .He wouldn't give in, so I just sat there
staring, my whole world stopped and went blury.I had
walked into his office half an hour ago a 31 year old with
his whole life ahead of him and I will be walking out as a
man who had no future whatsoever. He offered me NOTHING.
What really pissed me off was that I had to pay for this!
I left and his parting words were, "Take a holiday,
and don't lift anything heavy. That day was the 31st of
October '94 my 1st wedding anniversary.
I got a second diagnoses a month later.
My family and me were all devastated
and horrified at what the future , or lack of, held for
me.
At the time of diagnoses one of my daughters
(Carina) was 6 and the other one (Jamila) was just 2
months old. We had just bought and moved into our first
home and I had just opened a new outlet for my business.
This was not a good time to get sick.
I'm not going to go down in history as a
bloke who never complained once or who handled what was
given to him .
The fact is at first I couldn't handle
it very well and always said why me, I don't deserve this.
As time goes on I have accepted my condition and do try to
make the most of my life, but I still get very frustrated
with my limited abilities.
When I first got diagnosed I thought allot
about what caused it an am convinced that it was a
combination of work, lifestyle and personality.
Work:
The stress that I
was under with deadlines, staff problems and workload was
unbelievable and I pushed my body to hard and didn't get
enough sleep, and the main thing, I was exposed to the
many toxic chemicals that Screen Printing requires.
Lifestyle:
When I did get time of I would go to the pub and catch up
with my mates and drink to forget the stress and relax.
These sessions would last for 12 hours or more at a time.
It felt so good to get drunk and laugh I didn't want it to
end, and it usually didn't until I brought all the beer
and bourbon back up, sometimes I still continued to drink
after being sick.
Personality:
I have always been extremely shy and withdrawn and get
really nervous in social situations to the point of
sweating excessively .I also have suffered from severe
panic attacks since 1990. I'm sure this would have played
havoc on my nervous system.
After being diagnosed I was still 100% ok
physically there was no apparent muscle weakness ,
soreness or tidiness so of course I couldn't except the
disease, as far as I was concerned the doctors got it
wrong. I didn't want to hear about, see anyone with or
have anything to do with Motor Neurone Disease. I decided
to only work occasionally and stay home and do the things
that I enjoyed. I love to build things so I started of
with a garage, then a deck around the pool, a cubby house,
gardens, pathways, swings, cupboards, bar, I went crazy, I
now know that I did this to keep my mind occupied and not
dwell on diseases. I still had moments of depression but
only rarely.
During this time I also read allot of books about people
who beat the odds and regained their health after being
terminal and I also tried allot of
alternative treatments. Anything that offered some
hope I tried, this got me through the early days.
I was able to continue on like this for 2
years because there was still no weakness except I
couldn't cross or click my fingers so was pretty
happy considering that my time had expired.
Over the next year I started noticing that my
fingers were getting weaker, things were getting heavier
and my handwriting was slower. This was probably the
hardest and most frustrating time for me because it was
impossible to put MND out of my mind as ever time I used
my weakening hands I was reminded of the thing that I
wanted to forget the most. It's so hard making the
transition from normal to disabled.
The last thing I made before my hands gave
out was a rustic bar 3 years into my illness.
Due to the progression of my
illness we are forced to sell our beautiful, comfortable
home on the Central Coast and move to somewhere closer to
our families because my needs have exceeded one carers
capabilities. We thought long and hard about moving near
my family on the Northern Beaches of Sydney but
unfortunately the prices of houses in that area start at
$350, 000 for handyman's delight. Renting a basic house
costs around $350 per week and we didn't qualify for the
department of housing home because now that we have sold
our home we have to much money in the bank? So being on a
disability pension (makes me feel like a bludger) and not
being able to get another loan , obviously Sydney was not
the way to go.
Queensland however, is the
only other choice we had and it offers us everything we
need except of course my
family. Francis's family live at Goodna which is on the
outskirts of Brisbane, and they have kindly offered to
look after us until we find our own new home. We should be
able to find a new home close by for a price that we can
easily afford without having to borrow. At this stage we
are thinking of buying at Springfield which is one of them
"Satellite Cities " of the future, every home is
sold with a computer hooked up to the internet by
underground optic fiber and they even have their own
intranet within the community. Check it out at here....
to see what I mean. Sounds great for someone like me who's
computer has become his best friend, I'm really looking
forward to living their.
Living in Queensland will be much easier for Francis too ,
having her family to call on. She was going to move back
to Queensland when my "journey to the other side of
life" was over anyway, so
this will make it easier for her when the time comes too.
As you can see , Queensland
has many advantages for us and the only disadvantage will
be that my family and other daughter Carina won't be near
by, but mum said she'll visit every 7 weeks staying for a
week and she'll bring Carina up every school holidays.
What I thought was going to be one of my most
disappointing times since being diagnosed is shaping up to
be one the most exciting.
Oh! If your
thinking how can I burden someone else's
family with my presence well Francis and I have all ready
discussed the later stages of MND and I'VE decided that
when I feel like I'm getting to much to look after e.g..
can't move, ventilator, feeding tube etc. (well I haven't
made my mind up about these yet, but at this stage, no
way! ) that I will move into a nursing home where I can
get the 24hr care that I may need. This will be MY
decision. Anyway I try not to think that far ahead but
such a move requires me to do so.
I will still be barracking for Manly and the blues.
Paul
