The scourge of scoliosis...

As the spinal muscles start to weaken it can invariably lead to scoliosis or a curvature of the spine. A twisted spine is a complex condition in itself but for those with DMD it can be the most daunting challenge. The time for surgery has a very narrow window and the decision to operate or not may be needed within a few weeks as breathing and heart issues can affect the operation. So some go through with it and a few miss out or choose not to do it. Originally I didn't want it but my parents and I were talking it through and I was coming round to doing it. Unusually the spinal team monitoring me said I didn't need it and that monitoring was stopping and that my wheelchair back pads would keep my back safe. This was a huge mistake and I was let down badly, as my back is far worse causing pain and it accelerated my breathing and heart issues and prevented me easily having a feeding tube. Proper monitoring is a must, I cannot emphasis that enough.

Extract;
...my curvature was [apparently] below a certain threshold level and I wouldn’t be needing surgery. Also he mentioned that my wheelchair support wedges would be enough to keep things in check. I was to be discharged from the clinic with immediate
effect. At the time I was very relieved not to keep having more uncomfortable X-ray sessions and to be avoiding surgery. However I did not know the precise muscle wasting I would have to endure in the future, we trusted the registrar and consultant. In recent years my spine is much worse...

To see how a futher lack of monitoring nearly killed me then please read and buy my book DMD Life art & me; 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.

Some things never change...

I often say that DMD can't take everything away and one particular things stands out today and that is a good home cooking! When I first started secondary (High) school I used to eat the lunches there, but quickly - because the food was too unhealthy - I had to bring my own. I loved the sandwiches my mom made, and the surprise about what flavour it was that day was always cool. I did that until I was 16 to 17 years old. After a time I couldn't eat sandwiches but as I said some things never change as I'm still eating home cooked foods! Thanks Mom, I love you!

Extract;
.....Originally I had school dinners until I started having stomach aches and general sickness. I switched to a packed lunch which immediately made me feel better. My mother made cool packed lunches with delicious sandwiches. My absolute favourite was ... ; it had a taste that made me feel like I was back at home...

Find out what my absolute favourite flavour was by buying and reading my book DMD Life art & me 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.

Coat Catastrophe...

One thing we all take for granted is putting on a coat, but putting them on in a wheelchair is a whole new ball game! In the beginning as a wheelchair user I found it awkward but not too difficult to get a coat on. However as the previously mentioned contractures started to affect my arms, it became nearly impossible to wear one. So what to do in the rain? Well there's two options, drive as quickly as you can to safety or put on a very ugly rain defender that actually can make you wetter because it pools water! Nowadays I choose a third option of using a fleece cover but nothing is ideal! One memorable occasion in England a few years ago led to my family and I coming back to our hotel completely soaking and laughing at ourselves!

Extract;
Suddenly without much warning heavy rain started to pelt down and a huge storm erupted, my rain protector was shoved over me and we started to race back to the van. Unfortunately we were all soaked through by the time we made it; the drops of water were huge and so cold! About five seconds after we closed the door we were bathed in bright sunshine again... We all laughed at that....

Find out what happened next by reading and buying my book DMD Life art & me 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.

Childhood complacency...

When I was younger and in the wheelchair for the first time, I thought that was the way I'd stay pretty much all the way through life. Somehow even though I read about the later stages of DMD I thought everything would carry on as it was. I just couldn't connect the future applying to me in any way, "surely that won't happen to me". I had a wake up call later on in my teenage years and that trauma changed my outlook, my childhood complacency had gone;

Extract; .....I was going to be another year older, but I never really thought things were going to get harder. I just imagined being the same, that this was all that
there was [to] DMD...

Read about my wake up call in my book DMD Life art & me; 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.

Mechanical moving...

A downside to a disease someone is born with, is one thing every mother dreads; a child growing out of things! Instead of growing out of shoes and uniforms, we grow out of wheelchairs and adaptive technology as well as those things. I would get so fed up of trying to get comfortable in a new chair then having to get another one within a year or two. As a child watching my body change I just didn't want anything else to change. In the end I would change but only when I could see I needed it. Now while this current wheelchair lasts I'll keep using it hopefully!

extract;
...I soon got comfortable in this new chair but I was so fed up with the constant equipment entering my life all the time. Just when I had gotten used to a piece of equipment I was measured up for a new item. There’s no choice with DMD you either
had to change or be in pain from an undersized piece of equipment...

Read more about this and find more gems in my book DMD Life art & me; 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.

Flying Friday

When I was around nine I had the chance to fly in helicopter with the now defunct charity called Airborne which was run by Mr Noel Edmunds. I absolutely LOVED it, flying is something I've always been keen on and seeing Wales from the air was awesome. Despite having DMD I have been blessed with amazing experiences all through my life, it's not all muscle loss and pain but sometimes pure JOY!

Extract:
...The sights were amazing we could see rolling green hills and the whole of Wales in the distance. We headed over the old Severn Bridge, which was glinting brightly in
the strong sunshine, like a sleeping grey giant. It was all over so fast, such an anti-climax; I could have hovered up there for hours! A mere ten minutes later we were slowly touching down in the field. I am very grateful to Noel and Airborne; that very day sparked an interest in everything that flies...

Find out what else happened during my flight which could be described as slightly comical or slighty scary but I'll leave that up to you! You can 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.

Keeping things straight...

Contracture's are an annoying part of DMD, it's a process where as muscles die off they tend to shorten tendons and become so tight that walking becomes nearly impossible. It can be alievated by stretching the legs and arms early in life, but even this can become unsuccessful and tendon surgery may be indicated. I had it on my ankles, hamstrings and hip flexors, it was effective as my feet are much flatter on my foot plates. However my hands and elbows are pretty bad, stretching now may break something, so I'm stuck with it. It's interesting the technology out there to help, so even this can't stop us!

Extract;
... That makes it impossible to completely straighten your arms or legs without causing huge damage and pain. So in an effort to prevent the worst of these effects on my legs, the orthopaedic surgeon who saw me ... said he was going to cut my hip flexors, hamstrings and ankle tendons...

Find out more in my book DMD Life art & me 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.