Things not in textbooks

Things not in a textbook

You often see the usual statistics about Duchenne, for instance 1 in 3500 births, weakness, wheelchair by roughly age 10, ventilator use in late teens or twenties and eventual death (a very abridged version but all the essentials). There's so much more to it than that, so much left unsaid.

They never tell you how difficult making friends will be, I am very fortunate to remember at least one close friend throughout my life periods but the vast majority are acquaintances. I remember trying to get back in contact with some school acquaintances and a visit was arranged the excitement grew and grew. After I left secondary school I had few visitors so I was looking forward to it but alas all fell through and I never heard back from them...ouch.

Also they never say how you are meant to pass your time when you face constant mobility decline. For children with DMD they often watch friends or acquaintances play and ache because they cannot. You have to learn to play by yourself or come up with novel ways or joining in. Imagination is definitely needed I loved playing with my cars and games consoles also greatly helped. Staving off boredom and thoughts of negativity becomes increasingly difficult when the pool of things you can still do shrinks. I'm very thankful for technology because without which I would be very isolated.

Another thing I never expected is what swallowing issues actually mean, you can definitely get used to pureed food if of course you can still eat. In my case it also means I can't swallow saliva very well so I end up constantly drooling usually on to pieces of kitchen towels. Delightful isn't it? I jest. Drenching my tee shirts every day especially first thing in the morning is tedious and often makes me feel disgusting. Choking on saliva is scary because I'll need suctioning to clear my airways very quickly. I mostly try to ignore all this because I don't want to be caught up in self pity.

One other thing which isn't apparent at first is how cold you can get I've noticed this more as I get older and physically weaker. I am covered in blankets winter to summer and my parents pay a small fortune in heating the family home. It can take hours to get suitably warm and seconds to quickly get bone chillingly cold. I remember having a newspaper photo session done outside in September with not as many blankets as needed. By the end what little movement I had evaporated and it was impossible to drive my wheelchair it was very disorienting and it took all day to warm up!

Finally you'll never know or maybe it's just me, how to make difficult decisions especially medically. When I went into hospital in 2001 as a naive teenager I never expected to leave with a mini tracheotomy let alone need it for the next 14 years but that decision was made for us by a mucus plug nearly killing me. When trying to assess the need for a feeding tube I ummed and ahhed and a doctor acted quickly to get me in for one, it was an horrific time, I had to fast before it and they kept me waiting so long I felt very close to respiratory failure even whilst on my ventilator. And to top it off it was impossible to fit one because I was too badly twisted up from scoliosis and couldn't lie flat on my back. Later a surgeon assessed me and if they put me under a speedy general anaesthetic it could be done, that decision is still pending and I don't know what the right decision is because thankfully I can still manage pureed food.

The latest huge decision is when or if I should elect to have a full tracheotomy to allow me to continuously use my ventilator. I have been told that for periods I could be “cuffed” which means I could not speak which greatly concerns me. Hopefully I will still be able to talk but would you want to lose you're voice even for a little time? I know many who do talk with full tracheotomy ventilators but I'm not them I don't know how it'll turn out after the procedure. Then there is the criteria for making such a decision, should I go by arbitrary figures like forced vital capacity or when non invasive ventilator settings need to be constantly altered. Or should I go by how I feel because when I'm off my mask/nasal pillows to have meals and get out/in of bed I'm finding it hard. I increasingly gasp for breath whilst getting really warm because of the breathing exertion. Being hoisted really makes me agitated especially in the morning I feel like I'm suffocating but thankfully that isn't everyday. So there you have it my dilemma and those things not in textbooks. None of this is a pity party I'm just informing you of reality for myself.

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; 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