It's always difficult to watch my family eat different things to me because I need to eat pureed food. So it's fantastic when my mum makes something we can all eat obviously there are adjustments for me. For instance tonight we had cottage pie, the main ingredients were all pureed and I had ready made mash. It was amazing and inclusive. It's always empowering to do something everyone else can.
Extract;
...Eventually she referred me to a lovely new local dietician, who immediately put me
on food supplements (both milk based) and boosted the types of pureed food I could have (namely by adding cheese, milk and thickeners to my food) ... this worked and I regained three stone over the coming year...
Above was the first time I ate pureed food, I was 6 stone at the time which was dangerously thin but I went back to 9 stone. So I'm incredibly grateful for the food I do get but being included is the metaphoric cherry on top. Read more about how I'm included in family life 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
All links available in my website here; http://duchennemen.net16.net/Buy-my-books/
My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857
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.
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