Ongoing diagnosis

I see a few parents who remember their sons or rarely girls diagnosis day down to the hour. The news their child has DMD is heartbreaking and terrifying all rolled into one. For the affected individuals however we have many diagnosis days over our lifetime. Many are thinking about their differences and when the body fails they pluck up the courage to ask “What is going on?” or words to that effect. The current advice is to only answer the affected individual's specific questions so as not to frighten or hurt them. It's difficult for parents to do this especially when potentially anyone in their community could tell the child too much information.

In my case, at about fifteen I was more or less fully aware of DMD but I was in denial that I'd follow the natural progression. Alas I followed it to the letter. As a younger child once my questions were answered I didn't dwell on DMD until the next question arose of course. I and many like me focused on the moment and got back to childish fantasy and games. It's only now that I struggle with DMD but certainly not constantly. I'm often over tired, chesty, hurting and yearn to do what I cannot do. Death is never far away when you live with Duchenne's in your thirties. It's interesting how an adult mind finally starts understanding things but then the anxieties, worries and fears also get heightened. Some with this disease suffer with anxieties as children but every individual is different.

It makes me think why do the parents get so devastated at diagnosis day and subsequently on its cruel anniversary. I think parents have every right to be upset by the potential early death and horrible physical limitations. However it's more complicated when you mourn the loss of potential marriage, the possibility of being a sports star, missing out on a top job and a variety of other things. Things like this are upsetting but we shouldn't invest our lives grieving on these material things. Marriage is not guaranteed for any human, sports stars have brief fame and fortune but many end up injured and some bankrupt and potentially being a lawyer and so on is not impossible even with DMD.

The important things to focus on are making sure we learn to do the right thing and what we ought to do instead of what we want to do. Being kind, polite and selfless will be enormously helpful when the affected individual needs twenty four seven care. Asking for help is difficult especially if unkind words are used, it's far better learning those lessons of kindness and being taught how to behave early on. Focusing on what you can do is cliché but it definitely works although not always because everyone gets their down days. There's always something we can do, such as art, working with computers and code, studying, being an accountant, organizing events, writing and so on.

I might not go out much or have a university degree but I'm an artist and an author despite not being able to breathe entirely on my own. We can definitely learn from the young child's way of living with DMD. Maybe we should always think like a child and focus on right now living this moment in time. We should dream about good things and focus on doing something rather than live in fear and what if land. Mentality will help you through this disease, finding silver livings and remembering your blessings does help. There's always someone worse off, at least I'm not “locked in” unable to talk or blink or do anything whatsoever. I'm thankful for what little I can do and parents you're amazing but please also focus on what you can do too! As well as helping your child focus on their abilities in the face of disability. This post is not meant to hurt peoples feelings but rather I hope you can be encouraged by my words.


More on a range of subjects can be found out in my book;

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/buymybook.html

My art can be viewed here; http://www.redbubble.com/people/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