A little bit of Good care goes a long way!

In my life I have had some shocking levels of care but there has been some shining examples of awesome care and thoughtfulness dotted throughout. Bad care can often humiliate and make life harder than it already is. That goes for anyone but it's ten times harder for someone with DMD. Good care fills you with confidence and reassurance and it improves your life. One good occasion happened to me in primary school;

Extract;
...I was getting noticeably slower and weaker in school; the headmaster was quite
helpful and got the LEA (Local Educational Authority) to install ramps and an improved toilet area for when I would need a wheelchair....

This helpful improvement meant I could stay in school until comprehensive school and it led to a unit being added to help autistic children too. So one improvement meant other children could learn and potentially change their lives.
Find more examples of great care interspersed through my life in my book DMD Life art & me and buy here; http://duchennemen.net16.net/buymybook.html and here or here!



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.

Diet time again? But not what you think...

It seems to be that time of year when everyone needs to diet or change themselves. The DMD diet isn't glamorous or a fad, it's a strange eat it while you can diet until you can no longer eat in the usual sense. You start off young eating all the joys of food you can and usually get pretty large. Then the disease kicks in, appetites decline, swallowing gets really hard or chewing wears you out and you lose weight quicker than any celebrity! There is a way to gain weight back and it invovles supplements and foods higher in fat and I personally used full fat milkshakes. So while the rest of the world is obsessed with losing weight we are fighting to keep some. I wouldn't recommend a DMD diet, its major drawback is dying young and missing out on something we enjoy.

Extract;
....It’s hard thinking back to what I could eat then. I will always have memories of wonderful restaurants and am grateful to have tasted such a vast variety of foods while I could. Losing this pleasure in life was and still is a huge body blow to me...

This is no pity party however, DMD will be cured and this diet will end up in the bin with many others! Read about how someone lives with Duchenne whilst waiting for this cure in my book DMD Life art & me, and buy here; http://duchennemen.net16.net/buymybook.html




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.

Jubilee and Memorial...

Today marks the anniversary of our Queen (Elizabeth II), her father the King (George VI) died in 1952 and after flying in from a foreign visit she was later coronated Queen in June of that year. Six decades is an amazing achievement. :)

I thought it would be appropriate to remember how DMD got its name. Over 150 years ago a scientist in France called Guillame Armand Duchenne noticed that young boys were dying of a mysterious disease and noticed the characteristic elongated calves generally apparent in the young boys (sometimes girls are born with DMD) he studied. He called this elongation 'psuedohypertrophy' which indicated the 'false enlargement' of the muscle. It was enlarged because muscle was actually dying but not due to any increased growth. It took until 1982 to locate the gene at fault for this, which of course was dystrophin. Many potential treatments are being investigated now but as of yet a cure remains elusive.

To read how Duchenne's affects a living breathing person then please read my book DMD Life art and me and buy here; http://duchennemen.net16.net/buymybook.html

Extract;
....Duchenne Muscular Dystrophy is a rare (approx. 1 in 3500 births in the UK) severe terminal muscle wasting genetic disease that gradually kills all the body’s muscle cells...



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.

The suspicious disease...

In the beginning a child with DMD appears to be 'normal' and this causes no end of suspicion in other people. Say if a child with DMD needs to use a wheelchair only now and again then people can think something is amiss even when DMD is secretly stealing muscle. Or worst still people think you're not even unwell!

Extract;
...My illness is met with suspicion and a total lack of knowledge or worse still they think you’re “putting it on”...

There is a way to gently put this right and that's by education which is partly what my book is about.

Extract;
...It’s important for people not to judge when or if they know a child has a DMD, the best thing you can do in my opinion is to say you’re sorry to hear of the devasting news. Also ask is there anything you can do to help. Please try not to ask questions that you wouldn’t ask of any other terminally or seriously ill patient....

To find more insights and educate yourself about DMD then please visit and Buy here; http://duchennemen.net16.net/buymybook.html



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.

The 30%....

A very little known DMD fact is that approximately 30% of those diagnosed do have some developmental problems. The protein Dystrophin (the missing protein causing DMD) is usually present in the brain to a certain extent, but because of DMD it is absent. No one is entirely sure why most with DMD are fine developmentally and a few aren't as we both lack dystrophin. It could be a hidden compensatory mechanism (that's my speculation). Personally I have no apparent problems.

Extract; ...to send me to a ‘special’ school, but my father flatly refused that idea. I did not appear to have any developmental problems. Also (I’m grateful to say) he
wanted me to learn geography, history, maths and all the other subjects so called ‘normal’ children take. Not learn to “tie my laces”, even though I would have been too weak to do that later in life. I was going to be ‘different’ enough without going to a
special school....

I appear to be disparaging about special schools but in the 80's they were all about life skills that would not help me. With no mind problems, I could definitely keep up. These days many special schools teach subjects and work on specific development areas and may indeed be useful for those with DMD.

Read my book to see how my education went and buy my book here; http://duchennemen.net16.net/buymybook.html



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.

A 10 year diagnosis...

####################################### artwork available at artwanted.com ##################


It's a strange disease DMD, in many ways more than just the awfulness of the condition. Diagnosis in the vast majority of cases is received by the parents, leading to the precarious situation of the affected individual being totally oblivious to what's occurring. (Not that telling a young child they are dying at a quicker rate is advisable!) It leads to a drip feed situation of a gradual diagnosis over many years. About 10 years in my case. So a snap diagnosis for the parents and a multi year diagnosis for the affected person. Whether this is right or not is entirely up to the parents and the situation at the time. For me it worked well. Such a shame though that our playful 'normalness' has to end. Then again who wants to be normal!

Extract;
...My parents were offered a seat whilst my sisters and I played with the toys oblivious to the gravity of the situation. It was explained to my parents that my biopsy result came back positive for a disease called Duchenne......
...After hearing the average life expectancy of twelve years [1986] they were in immense shock. How could their son, who was happily playing with plastic cars, possibly die at such a young age?....

To read when I fully knew about the ugliness of DMD and live past twelve then read my book DMD Life art & me and buy here; http://duchennemen.net16.net/buymybook.html


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 is DMD?

So what is DMD? Many may know but for most it's a hidden unknown condition. Duchenne is an x linked recessive disease mainly affecting males but on occasion females too. It's a muscle wasting disease that affects skeletal muscles firstly meaning between the ages of 8-12 children are in a wheelchair, by 16-18 they may need ventilator support and heart issues may arise, sadly by the mid to late twenties death may usually occur.

Extract;
...At a genetic level, I have something called Exon fifty missing, which is known as a deletion. Exons’ are like letters or words in a genetic “sentence”. For instance say the normal “sentence” for Dystrophin is;
THE CAT AND TOM RUN FAR
In the case of my deletion the “sentence” looks like this; (imagine the letter “e” represents Exon fifty)
THC ATA NDT OMR UNF ARA
This is a nonsense mutation, one possible way of developing DMD. (More information at MDEX consortium and various DMD charities on the web)

However DMD is far more than cold facts, to read about a life affected by Duchenne then visit and buy here; http://duchennemen.net16.net/buymybook.html


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.