DMD is a bit like a battlefront in many ways and just like a front line needs good supply lines so does a life with Duchenne's. A case in point would be my suction catheters. I've run really low on them lately after numerous attempts to have some ordered they seemed never to be ordered. Thankfully I finally found out they have now been ordered. It got me thinking about all the supplies that one needs when living with DMD. In the beginning there's relatively few supplies needed just electric wheelchairs and the like. Now as an older man with DMD there are many supplies needed such as catheters, tracheotomy neck tapes, tracheotomy tubes, ventilator tubes and connectors, wheelchair supplies and medications! There are probably more but as you can see it's vital the supply lines stay open because without them life would be impossible.
Extract;
...Under the third shelf lie the rest of my large medical supplies such as boxes of suction catheters and a box of Tena pads used to cover my bed and wheelchair. Only recently do I store my mobile hoist by the window,
it creates a better space in our living room (where it used to reside)...
Read more about these vital supply lines in my book DMD LIFE ART & ME!
EBOOK available here; https://www.smashwords.com/books/view/69702
Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1
Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1
My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857
All links available in my website here; http://duchennemen.net16.net/Buy-my-books/
My art can be viewed here; www.artwanted.com/thebigG2005
Foreword
I’m
Ian Griffiths from South Wales.
This book is a story of my
life so far up to the
age of twenty five years. I
live with and suffer from
the ill effects of DMD
which stands for Duchenne
Muscular Dystrophy. It is a
severe muscle wasting
disease and a life limiting
terminal illness. It won’t
kill you in six months in
the traditional sense of
‘terminal’, but it’s far
crueller than that, it steals
every muscle in your body
first and then kills you,
anywhere up to the age of
thirty. There have been
cases of men living past
that into their forties and
fifties but only with
drastic interventions such as
ventilators and
tracheotomies, more on this can
be found by reading on.
I
hope to cover a few things in this
book, from a history of
my childhood years to a
more detailed history from
sixteen years onwards
and finally onto my current
problems and triumphs. At
times things I write may
make you smile or may make
you pause and think about the
seriousness of life with
this devastating disease.
I really hope there will
be a cure but currently for
us supposedly ‘older’ guys
with DMD (over twenty
one), there seems very little
hope. If I don’t see a
cure in my lifetime, I hope
my campaigning helps in
some way bring it about for
future generations, so
another child won’t have to see
their body wither and
die before their time
Welcome to my blog!
Hi there!
This blog is related to my autobiography DMD Life art and me plus there will be non related posts. I have the disease Duchenne Muscular Dystrophy and that has left me in a near paralyzed state, I wrote this book in 10 months using one finger clicking one mouse button on one on screen keyboard! Be a follower by clicking in the box on the right and you'll get every new post I make. Feel free to join in with your comments and enjoy!
Ian,
Author and Digital Artist
This blog is related to my autobiography DMD Life art and me plus there will be non related posts. I have the disease Duchenne Muscular Dystrophy and that has left me in a near paralyzed state, I wrote this book in 10 months using one finger clicking one mouse button on one on screen keyboard! Be a follower by clicking in the box on the right and you'll get every new post I make. Feel free to join in with your comments and enjoy!
Ian,
Author and Digital Artist
Thursday, 20 September 2012
DMD logistics
Labels:
Autumn,
battlefront,
catheters,
DMD,
Duchenne's,
life,
lines,
older,
ordered,
suction,
supply,
Thursday,
tracheotomy,
ventilator,
wheelchair
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