A Mother's Intuition....

Parents often have difficulty in persuading local health officials to take them seriously when they notice problems with their child's development. It is especially difficult for those with children who have Duchenne. A mothers intuition is nearly always right on these matters but doctors seem to discredit this. It is bad enough that your child has a life threatening disease yet it is so widely unknown by local medical teams that your parents have to practically beg to get their child looked at. If you ever feel your child is unwell then do keep onto them to get a diagnosis, because often a mothers intuition is spot on.

Extract;
...When I was about 18 months old my mother noticed I wasn’t moving around like I should have been, my sisters could run rings around me.... My mother was obviously concerned, so she contacted the health visitor and our family doctor. They were unconcerned at first and didn’t know why I was having trouble walking. My mother then had to persuade them to let me be seen by a paediatrician, they had put my problems down to over worrying on my mothers’ part, but after a few weeks they finally relented...
...It was explained to my parents that my biopsy result came back positive for a disease called Duchenne Muscular Dystrophy (often abbreviated DMD)...

To Read more about what this devastating diagnosis did to me and how my family and I coped then go here to buy my book DMD life art and 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.

From small acorns mighty oaks do grow...

I was born in 1984, a life ahead unknown. I would never have thought my life would turn out as it did, that a DMD diagnosis was coming, that I'd be in a wheelchair at 8, that I'd nearly die at 16, that I would find painting and that I'd write a book!

Extract: ...It all started on a summers’ afternoon, I was born on the fourteenth of July 1984 at around two fifteen in the afternoon in ... South Wales. ... I appeared to be a ‘normal’ healthy child who weighed in at seven pounds twelve ounces...

To read more about the incredible life altering diagnosis I received and to follow me through all my ups and downs then visit 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.

In memory of...

Sam's sky copyright Ian A Griffiths


This book might never have been published if it wasn't for my friend Sam Morgan. It was so devastating when he died in 2010, that day it was like I couldn't think I just sat there quiet and upset. At the time my book was a manuscript on my computer, after a number of rejections I was about ready to stop trying. What happened next was totally unexpected. After Sam's funeral, his parents Colin and Debbie so kindly gave me the donations from the funeral and with them my book was self published! It more importantly kick started me into action, to which I am absolutely grateful to them and Sam and to God. Thank you! What an added incentive to buy my book. Half my proceeds go to Action Duchenne and DMD Charity. Please BUY here; http://duchennemen.net16.net/buymybook.html

For you Sam, Dedication;
...This book is dedicated to my dear friend and brother in Duchenne Sam Morgan. He was sadly and cruelly taken in September 2010 by the deadly claw of this muscle disease. Your kind, loving and brave soul will be fondly remembered ever more. The painting on the back cover was painted especially for him, may he now walk above the clouds. My thoughts go out especially to Sam’s parents, Debbie and Colin....


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.

Ebook

DMD Life art & me is available in ebook formot now. It's available on all formats, EPUB, MOBI and more! Perfect for those with DMD who cannot hold books and anyone who can't hold books for that matter! Its at the fully reasonable price of $3 (roughly £1.92). This is a great way to take DMD knowledge around with you everywhere!

For more information about my ebook and to buy please go here; http://www.smashwords.com/books/view/69702



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.

Differences in care

School is hard enough for those with Duchenne, but there's an added part. That added part is the need for one to one carers. These help with toileting, carrying things, taking books out and helping with writing. You have to be really dedicated and most of all caring! A skill in decline lately. Bad care, demeans the cared for and can really hurt feelings that already have much to deal with.

Extract;
....She complained about her “pain” a lot, even though my muscles were dying in front of her! The final straw for me was when I had a sore throat and fever. I asked if I could go home (colds or chest infections could potentially cause major complications that could lead to death in some cases of DMD like mine) and she was laughing at me...
(note-please don't judge this person, DMD is rarely understood and this is just a result of poor awareness)

Conversely good care builds up, encourages someone to do their best and makes learning fun.

Extract a few years after the above; ....Eventually my new carer came into the room carrying my table in hand. She had slightly curly brown hair and a beaming smile ... She was extremely helpful and asked what I needed for the English lesson.
.......After an hour of study I would be exhausted and ready to chill out at home. (I was)... led me outside, and my wheelchair drove reluctantly up the hill. I dodged students and waiting taxis until I found the familiar van that took me home every night. I said my goodbyes to some friends from the unit and told my new carer I’d see her the next day.

Read more about my care from my family, school and the medical side in my book DMD Life art and 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.

Family stability

A stable family is definitely important when dealing with DMD. I know for many this isn't possible but a family is more than just mom and dad, the whole family can ease the load.
My Dad is great and if I need something made to help I ask him. Mom gives me the best care. My sisters help out when they can. My niece and nephew bring happiness. My aunts and uncles help out where possible and are cool to talk too.

Extract about my mom;
...I always remember her as being strong and loving throughout my childhood and now into my adulthood. She has always backed me up when things piled on me, instilling a ‘get up and go’ mentality that continues to drive me. We’ve always tried to attack things positively and if I just need a hug or reassurance she’s right there behind me...

Love you mom!

Read more about my family over my entire life, from childhood to adulthood in my book DMD Life art & me! Available 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.

Heart Problems

A frightening part of DMD is having heart problems. DMD actually affects the heart as it's a muscle too. We tend to get dilated cardiomyopathy. It's something to aware of as you're not often informed about it from any clinical team. It often starts with palpitations or a fast heart rate that lead to breathing problems,

Extract;
Then the palpitations got more frequent, not even the overnight use of my ventilator calmed me. In the mornings within minutes my hands would start pouring with sweat and I would sit in bed panting while my mother got me up... as I would get extremely
breathless and sweaty in my hoist. I would shout at my mother, “Get me off! Get me off! I can’t breathe, please hurry up!” I could see black spots in front of my eyes and very nearly fainted as my heart would try to hammer its way out.

It's very important if you have DMD and experience these symptoms then please get checked out. To see what I went through please buy 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.

The rarity of meeting heads of state

Meeting the Prime Minister is a major highlight in my life. It is incredibly difficult to meet a head of state, some people go their entire lives without ever seeing their leaders in person. The only way I got to meet Sir John Major back in the 1990's ironically was because of my disease. Starlight foundation make wishes happen for those with terminal and life threatening illnesses. I still have no idea why I chose to see the PM, but it highlights to me how rare seeing heads of state is. You've either got to be seriously ill or in a totally different squere of influence. Pretty daunting for a young child!

Extract;
... made our way to number ten and when we arrived there was a photographer waiting. The policeman on the door helped get my wheelchair up over the step and my mother and I posed for our picture....
... Soon I was on the upper floor and my next obstacle was five small steps. About four or five burly men lifted my chair and I over the steps...
... Next I went into the cabinet room as seen on television which was dominated by a large table and many chairs. It was so exciting for a common boy from the South Wales valleys...
... I went through a large shiny black door into an office type room which was ornately decorated. There sat ...

To read more and find out what happened next in my meeting with the Prime Minister of Britain then buy my book DMD Life art and 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.

Vacations

Vacations or Holidays are often a rare highlight in a life of illness. As I have become older it's impractical to go on holiday, it often adds to the discomfort instead of being a recharging time away. When I was younger and less disabled, holidays were fantastic and the best one I had was in Disneyworld Florida!

Extract;
...Forty minutes later the plane started to taxi toward the runway, my sisters and I were excitedly bouncing in our seats. Suddenly the jet engines roared and we were thundering down the runway until we leapt into air like a graceful aluminium swan...

I had a blast seeing some old friends, going on some rides, visiting attractions, seeing parades, eating wonderful food, enjoying the sun and having family fun. We always fondly remember it!

Extract;
...Thus ended our holiday of a lifetime; we all have fond memories of our time in Florida. The people were fantastic and extremely kind. The transport system was excellent and wheelchairs were welcome everywhere; so much different than here. It will never ever be forgotten by any of us.

Read all I got up to while I could in my book DMD Life art & me, please 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.

Depression - a way out

A difficult subject for many is depression, it's a common part of DMD. Unsurprisingly, loss of mobility, repeated setbacks, failed relationships and tiredness all drag a person down.

Extract;
I couldn’t feel any happiness; ... I was quiet at home and constantly thought
about how awful I felt. Unlike me there were no smiles, very few jokes and a general malaise ... Why did this disease have to keep snatching things away from me? All these negative things collided in my brain,

But far from self pity there is a way out, and for me a combination of faith, and doing other productive things really turned me round :).

Extract;
At last I began to feel my depression lifting, I looked forward to my food and my smile came back. I felt renewed and determined after my inner turmoil settled. I wanted my
positivity back and I wanted to fight my DMD to not let it consume my thoughts; I had got through life by not dwelling on things.

Read how I coped and turned it all around in my book DMD Life art & me here; http://duchennemen.net16.net/buymybook.html

Don't take depression lightly.


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.

Easy to do? Not quite....

Everyday tasks that seem ridiculously easy to everyone can be impossible for those with DMD. Take for instance sleeping, before I can think of sleep I need my mom to hoist me into bed then clip me into a full face mask and hook me up to my ventilator. Just jumping in bed isn't an option.

Another area is feeding, picking up a knife and fork is something I haven't done in ages! It's a major thing to lose that one particular independence, many don't deal with it well as it generally occurs in the teenage years. I dealt with it quite easily for some reason, although there were sad moments thrown in.

Extract;
....again my mother would have to feed me.
I had no problem accepting this part of my life; I knew I couldn’t feed myself so it was either that or go hungry.

To read more about the little independence losses I went through and see how I coped then 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.

Away days

The opportunities to be away from family especially if your main caregiver is a parent are quite rare. The longest I've been away from my mom was a 3 day trip to the coast of South Wales 14 years ago. It was organized by school.

I had a fantastic time but I did miss a few home comforts! Everyone does when their off camping etc. It was a packed full trip, visiting a canal, a police centre, a spa and a coastal town. Incredible we got it all in!

Extract;
The weather was glorious. Hot sunshine washed over everything glinting off many
metal surfaces. We posed for photographs by one of the large monuments dotted around the bay while the gentle sea breeze cooled us.
Our second destination for the day was a police facility in the nearby town... After a twenty minute journey meandering through heavy traffic we pulled into a huge grass covered complex. A ... police car was waiting for us and two police officers were standing by it in their uniforms. We were all in awe as we’d never seen a police car up close before.

To read more about my rare visit out and see all my other highlights then 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.

Comical Winter

It's another cold day today, while winter can be an uncomfortable time for those with DMD, there are still opportunities for humour even if at the time you weren't laughing!

One such occasion was during a blustery snowy winters day, trudging through the snow with me on a horse at riding school. It was one of those horses who could get distracted easily and well that's exactly what happened! Read this extract and you'll see;

Extract
....After a gentle ride past some snow banks the horse suddenly got startled and threw me off! I landed in some soft snow in a daze. My cousin was standing there laughing as my father chased after the bolting horse, I can remember his hat falling off and flapping behind him in a comical manner. He finally found the horse in a field. It was trying to catch up to some other galloping horses! If only we had a camera.....

What is it they say, never work with children and animals haha.

To read more hilarious stories and more sober tales then why not read my book DMD Life art and me. You can 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.

Resourcefulness

Resourcefulness is one thing that you really need when living with DMD, whether it's personally in terms of overcoming a disease barrier or ideas your parents or caregivers come up with, it is a vital thing!

My mother for instance came up with an idea to lift my standing frame (with me in it) using the ceiling hoist after the people who used to lift it were told not too. My mother thought about the problem and had a brainwave. (Although I wouldn't recommend this now but we were desperate all those years ago).

In my book I mention a few times about my dads resourcefulness, he made me a table, customized my headrest and one time fashioned a tray to hold my legs which were encased in plaster, it's first use was a bit hairy but it worled!

Extract
They were in heavy plaster which meant I needed support for them in my wheelchair. My father being an engineer fashioned a wooden tray that went under my seat and stuck out a few feet. My legs rested nicely on top of it.

The wooden tray couldn’t be secured so whenever my father braked it slid forward and my legs would hurt... I’m sure I nearly fell out of my chair a few times, but luckily my mother kept hold of the tray. It was a journey that usually took forty minutes; it felt more like four hundred! Finally we got home and I was so relieved to see my house, to see my sisters and to see my dog.

If I ever need anything built my father’s always there to make something, he fashioned my head rest, made me a drink holder and even replaced my table top to name but a few.


If you would like to read more on the resourcefulness that my family and I have displayed please visit 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.

Changing seasons

Do changing seasons affect those with DMD? Do seasonal differences really matter to those with DMD? Are colds a nuisance to those with DMD or potentially life threatening?

Wonder no more as we explore todays topic!

Hello everyone! Another winters day moves on! Before long spring will be upon us and these changes of season can be a dreaded time for someone with DMD as colds seem to attack then. They are so dangerous, one cold could be enough to bring on pneumonia and worse, especially the older the person is. One such event ten years ago left me in intensive care 3 times in a year! Just from a small cold. Being vigilant is absolutely a must! Read about this event that nearly proved too much for my life in my book DMD Life art & me and buy here; http://duchennemen.net16.net/buymybook.html

So monitoring colds and illness is a must these days, if you have DMD don't accept poor monitoring. It really is life threatening to miss out on this vital cog of DMD care, believe me the lack of monitoring I received was definitely a huge factor 10 years ago! Please explore this for yourself in my book DMD Life art & me.
Available worldwide!

Until tomorrow, stay safe!

Independence

There's lots of talk about scottish independence in the UK news, but independence means a totally different thing for those with DMD. Just to get myself out of bed would be an enormous leap and feeding myself would literally make my life easier. If that's not to be yet, then I've learnt to be content with where I am and be positive! All this physical stuff isn't important but being happy in your mind totally is. Read how I have always found diversions away from DMD here; http://duchennemen.net16.net/buymybook.html

Back tomorrow with more about my book!

First Post

Hi there, My name is Ian Griffiths and I've written a book all about my life living with a devastating disease called Duchenne muscular dystrophy. It Chronicles the first 25 years of my life, battling the disease that hardly anyone has heard of. On some occasions people mistake muscular dystrophy for multiple sclerosis, but the diseases are totally different. Duchenne is a X linked recessive disease that attacks the muscles from within the cell. Due to a lack of dystrophin, the cells gradually die and turn in to adipose and connective tissue that is becoming unusable. People with Duchenne usually go in to a wheelchair between the ages of 8 – 12. By the time they are 16 they will need to use cough assisting technology to help them remove secretions. Usually by they are 19 they need to use a ventilator to help them breathe. Death sadly occurs in the 20's on average. Sometimes death comes earlier but rarely a few people manage to make it into middle age.


Most days I will be updating this blog with small articles promoting my book and where you can buy it.

Please keep following,

Kindest regard,

Ian