Over the last few years I've developed something I really don't like or want. I call it tongue talking! Basically my tongue has gotten weaker so controlling it to form words is increasingly difficult. I'm often repeating myself just to be understood which is quite tiring but I try not to get too irritated by this. The mornings tend to be the worst as after a night sleeping my mouth gets dried out so it's even harder to talk. I don't notice much of this reported in the textbooks so you don't really expect it to happen to you. I know there are technologies to help with this kind of thing but we with Duchenne's like to hold on to our independence till the very end!
Extract
....He tried talking to me (but it’s next to impossible to be heard on a face mask)....
Read more about my daily difficulties 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/
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
Monday, 10 September 2012
Talking troubles
Labels:
Autumn,
difficulties,
DMD,
dry,
Duchenne's,
independence,
monday,
mouth,
pronouncing,
repetition,
September,
speaking,
talk,
talking,
technology
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