DMD logistics

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

What does that feel like?

Recently my newer once weekly carers have been trained to clear my chest of mucus using a suction machine. They often ask what does suction feel like because having catheters put into your windpipe certainly isn't natural! It's so hard to describe because if done properly it doesn't really feel of anything. On the very rare occasion I've had really painful experiences too. On the odd occasion I'll get a defective catheter with a severe bend at the end which you can't always see until it is too late. That feels like running a dagger down your windpipe certainly an ouch moment that causes spluttering fits in my chest. I go into more detail in my book, here's a little taster......

Extract;
 ....if my chest isn’t sucked out the mucus builds up and can block my airway all together. When the suction catheter is fed down it feels like another kind of blockage but it doesn’t generally hurt. When suction is engaged I get a certain amount of relief as the secretions are removed it’s as if someone turned my air back on again.....

Read more about the weird and wonderful world of chest secretions 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.