Inspired Life-DMD Life art and me

Then it hits...

2012-03-02T07:51:00.005-08:00

When I was 16/17 years old, the colds around me eventually penetrated my defences and I cought one. It quickly deteriorated even with some basic treatment and antibiotics I still kept getting worse and was becoming delirious.

As we didn't have a clue what was going on, I continued like that for 4 days. Getting worse and worse. Eventually we had to go to the hospital. The pain in my lungs was terrible, but what was to come I would never have thought would hit me!

Extract;
...My father woke up at about eight he took one look at my ill and increasingly frail body and decided that I should seek medical aid at the hospital. He had seen me quickly deteriorate over the past four days and became significantly concerned at my continuing distress...

Find out exactly what happened 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.

When under pressure...

2012-03-01T10:17:00.004-08:00

A very serious time for me was coming up to 2001. Unbeknownst to me my cough ability and breathing ability had crossed a vital threshold and I was in extreme danger.

A lack of monitoring had not prepared my family to the truth and we had no idea we needed vital pieces of equipment. If your child has DMD or you live with it yourself make sure you stay well informed because the medical world can be highly naive in this area.

Extract;
....It seemed everywhere I went and in most classrooms many people would be coughing sometimes unintentionally towards me. I never knew how much danger I was in, remember that I was unknowingly losing my cough ability and my breathing muscles were getting increasingly worse. All this was adding pressure to my immune
system as well as the year twelve worries and pressures. Inevitably my defences were weakening around me and the point of no return had been passed......

Read the inevitable consequences that happened to me 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.

There's some things......

2012-02-29T11:35:00.006-08:00

There's an awful lot people with DMD can do, and it's always a great idea to come up with resourceful ways around barriers. There are places however where those barriers become impossible while we have DMD. I remember one funny moment in a Geography in sixth form (after high school), the course was more and more 'outdoors' in nature.

One particular day we had to go to a picturesque part of Wales to do a survey of the area. The hilarious part was to go approximately neck high in a river. This was impossible at the time, my wheelchair isn't the submarine it could be! So this basically ended my Geography course as a lot of the work entailed strenuous outdoor activities.

Extract;
...Geography was increasingly focusing on activities ‘out in the field’. This literally meant expeditions to rivers and mountainsides. One memorable occasion on a trip to the beautifully green Gower peninsula, we were asked to go neck high in a river to take measurements. This was impossible for me and my wheelchair, it definitely wasn’t a submarine! As most of the course was increasingly getting physical again I had to drop yet another subject...

But my mother always says,"when one door closes another window opens". See what windows opened up for me 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.

Car cramming...

2012-02-28T09:28:00.003-08:00

My last vacations back in 2000 and 2001 were getting really difficult. The places we went didn't have beds that were great so we took mine. Thankfully having a van helped accommodate this, we also took my mobile (moveable) hoist and luggage and me and my parents. To say it was tight was an understatement! Six hours in that position was a little uncomfortable but we got there.

Vacations never felt like a rest because I took DMD with me, and using less comfortable devices and strange surroundings just made things a little harder. It was more work for my parents. We made the best of it though and had happy memories but we've never been on vacation since. I know there are more accessible places to go but I find home more comfortable for now.

Extract;
....Our luggage would fit in the extensive boot area and my dismantled mobile hoist ready for transport would be resting on my rear wheels. If we had a smaller vehicle holidaying would have been very difficult if not impossible. I would stay in this position for around six hours while my father swiftly drove us....

Read about my vacations and see the good times in my book DMD, Life ary 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.

Funny fascination.. Not quite an oscar..

2012-02-27T12:07:00.005-08:00

Many oscars have been given out recently, but everyone has their own memories like golden rewards shining in their mind.

One such memory makes me smile, when I was younger I used to have a carer take me out every week and we would go to the cinema or shopping. One cinema visit was hilarious and nerve wracking at the same time! It just goes to show how fickle memory is;

Extract;
....Once we arrived and presented our tickets, the cashier asked my age for the film. I said “I’m fifteen” confidently but [the carer] had forgotten this. He said “Oh no I’m sure he’s fourteen, you are fourteen aren’t you?” I’m quite embarrassed by this and tell the cashier that I was definitely fifteen. After a few tense glances the cashier reluctantly lets us through... We both laughed at his unsure memory. I’ll never forget the look on the cashiers face, it was priceless!

Read more of my funny moments 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.

Stressing sickness....

2012-02-26T11:08:00.002-08:00

Stress is no good for anyone, having the right attitude and keeping calm definitely combats this. However having that correct attitude is really hard to keep hold of!

In school, examinations and constant academic pressure always added to my stress and it led to a lack of sleep and irrational worries. I'll admit I'm no good under stress, but again the attitude is what it's always about.

Extract;
...Around May or June time we had two weeks of examinations. I was a nervous
wreck every morning before any exams. I didn’t hold up well under pressure, I would worry about doing badly and letting my teachers or parents down. I would often get a rumbling churning sick feeling in the pit of my stomach... If the pressure got really relentless I often picked up colds or infections. Those really didn’t help me....

Read how I coped through far more than exam stress 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.

Writing woes...

2012-02-24T08:14:00.005-08:00

In secondary (high) school about 14 years ago (that long!) I needed help to write. In the first and second years I could write pretty well on my own and keep up but quickly I just couldn't write what was needed.

Thankfully this was exactly why I needed a one to one aide, she took over writing and would also write as I dictated during exams. The only downside was doing my exams in a small cupboard type room!

Nowadays there's far more in the way of technology, like dictation software and on screen keyboards etc. So there are more options. Now children and adults with DMD (with a few exceptions) can easily interact with the world. The internet may have a bad name in some circles but it has opened up communications to so many disabilities not just DMD.

Extract;
...Increasingly Mrs Watkins had to write for me as a scribe. I would dictate my answers and she’d write things down word for word. Any long words I would have to spell out as it was my work. If I made any errors they would be mine....

Read more on communication in my book DMD Life art & me, and buy a real life 'textbook' here; http://duchennemen.net16.net/buymybook.html

I really appreciate all your purchases, thank you!

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 scourge of scoliosis...

2012-02-23T08:41:00.006-08:00

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...

2012-02-22T08:08:00.000-08:00

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...

2012-02-21T08:08:00.001-08:00

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...

2012-02-20T08:16:00.005-08:00

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...

2012-02-19T09:54:00.000-08:00

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

2012-02-17T08:02:00.000-08:00

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...

2012-02-16T08:47:00.000-08:00

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.

Things DMD can't take...

2012-02-15T09:34:00.000-08:00

Even though Duchenne's takes so much away from those who suffer with it, there are things it can't take! Even after being made a full time wheelchair user I still had my curiosity, going up the street to find something very interesting. Enthusiasm it can't quash, loads of those with DMD are go getters, earning, working, writing books and in some cases starting families! You would think being empathic might be difficult but we often care for others and want to see them do well! Imagination is definitely not destroyed by DMD, I have ideas always popping up especially for my art and writing! There's many more I could write about but that's why we smile when we do!

Extract;
..I had to get an electric wheelchair, which was provided by a charity. The one fitted for me was excellent; it even had a bright red comfortable cushion. I didn’t take long to adjust to it. I loved going outside in it, feeling the speed push me over the pavement and up hills. It was only five miles per hour but to me it felt like fifty! I often
drove up the hill outside my house to go and see a large fish pond a neighbour had. The Koi carp would glisten in the glorious sunshine we occasionally had, it was mesmerising for an eight year old...

Read through more happy memories in my autobiography DMD Life art & me and buy here; http://duchennemen.net16.net/buymybook.html and 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.

The only times of freedom...

2012-02-14T08:21:00.000-08:00

Dreaming in my sleep seems the only time when I'm truly free as well as using my imagination. Although you'd think I'd dream about walking or running through forests, I don't always do that, sometimes I dream of me as I was when I was slightly stronger. I remember one such dream, I was playing a football game on my playstation and I remember thinking when I wake up I'll play it. I was getting all excited and then I woke up, remembering that my playstation was gone and all my games too and that I couldn't hold the controller anyway. That was a come down I can tell you! Thinking positively really helps!

Extract;
...A time when I could truly escape, dreaming of winning sports contests and climbing
mountains, but sadly I had to wake up weak again. That is a measure of the truly heartbreaking nature of Duchenne’s muscular dystrophy. I always try to fixate on the things I can do and that makes it a tiny bit easier to get through the depressing times...

See how I cope through the rough times in my life when depression lurked nearby and how I survive and thrive through the rest of my life in my book, DMD Life art & me. Please buy here; http://duchennemen.net16.net/buymybook.html and 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.

Regulating heat...

2012-02-13T09:28:00.000-08:00

A big problem for me is getting cold, I know many others with DMD have the same problem. Circulation is often affected and because we are sedentary it can often exacerbate the situation. There is an experimental treatment (definitely not a cure) that appears in some cases to improve circulation but for those not using that we need to rely on blankets, heating (radiators etc.) and other heat producing items. It can be a real pain as some can't drive their wheelchairs, hold pens and computer mice or in some cases can even develop sicknesses as it may impact our already weakened immune systems. I need my heating way up high and the rest of my family are boiling while I'm just mildly warm!

Extract;
...I feel the cold very badly these days, I suspect the reason behind this is the fact I can’t move anymore (I’m often found swathed in fleece covers and wraps; our heating is on throughout the year too!)...

Find out more about my exploits with heat regulation all through my life in my book, DMD Life art & me. To buy please visit here; http://duchennemen.net16.net/buymybook.html and USA here and UK 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.

Sunday swimming smiles...

2012-02-12T14:04:00.000-08:00

Recently my mom was showing me some photographs of me holding up some swimming badges and that links well with today's topic. Every sunday for many years until about sixteen I used to go swimming with my dad at a local disabled swimming club called Starfish. You could earn badges if you could do certain things whilst swimming. There were 4 badges to earn, Red, Green, Yellow and Blue. Blue was absolutely solid to get and only very few earned that. I got Red and Green but I always used to rue the fact that I couldn't even try to earn the next two, DMD had taken too much strength away. We had fun but it was freezing while changing after the dip! I'd recommend swimming very much while it's possible.

Extract; ...In my later swimming years my father would drag me around the pool with his feet under my arms so I could join in with the lengths. It was a happy time that all the family joined in with, including my mother who would watch us through a large window sitting in a small cafeteria...

To read more of what I got up to despite DMD, then buy my book here; http://duchennemen.net16.net/buymybook.html also buy on UK amazon here and USA here!

Life with DMD is all about the things you can do not what you can't.

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.

Update on sales...

2012-02-11T18:32:00.000-08:00

Hi all my readers and followers I'd like to give you a few stats for the last few weeks,

Approximate USA Amazon sales; 3

UK Amazon sales; 0

Ebook sample downloads; 3

Ebook sales:0

Blog interest 209 views (Thank you!!!!)

Email responses to books, 1 absolutely fantastic email :).

Total books sold since Oct 2010, confirmed 120, approximately 60+ more. Near 200 :)

I know things are looking bleak and that times are really tough, hopefully next week I'll have better results.

For those who have bought my book, really my sincerest thank you. Pass on the message.

For those who are interested in buying my book, If bought through Action Duchenne 100% of the proceeds goes to them (limited stock) Roughly £200 given so far. If bought through Amazon then 50% of my proceeds go to Action Duchenne as well. Over £90 given so far. So not only do you help me you those who are affected. For futher information on Action Duchenne go here,

To buy visit DuchenneMen here or UK Amazon here or USA Amazon here!

Also I will not ever pressurize you into buying, if you genuinely are interested in reading about my life with DMD please do buy but if you just like following my blog and learning all things DMD please keep reading!

I'll post more statistics in the coming weeks to keep you informed.

Thank you,

With Love,

Ian

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 occasional pain of DMD...

2012-02-10T08:47:00.000-08:00

Generally for those with DMD pain can be a real set back. Not all get into pain, but I know a few people including myself who suffer moderate to severe pain. Twice last night in fact my back was in agony, a sharp nerve pain burning white hot. It's almost tear inducing as I wait for my air bed to inflate on its regular cycle and then the pain disappeared. I tried a strong painkiller but I hated the permanent head fog it left me in all day, so I go elsewhere with pain relief using faith and sometimes lesser medication. Mostly there's a certain level of discomfort in the background but I have gotten used it. The first memories of pain I have revolve around stretches that are needed earlier on to help us stay on our feet or stay flexible;

Extract; ... Often the doctor’s and physiotherapists would stretch my legs, feet and arms. I can only ever remember the pain, it would make me cry out and hot tears would run down my
cheeks. I understood that I needed to endure this because my legs were very weak, but I still hated it .... My legs were really tight and sensitive to pressure so my mother was told to stretch me everyday. I had to endure this pain everyday, some days I would just get so fed up and angry of Duchenne’s that I would argue and bargain just not to do them.....

Find out how I coped with pain and many more challenges 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.

When muscles start to fade...

2012-02-09T09:03:00.000-08:00

Depending on the country and level of DMD provision those with the condition might visit a muscle clinic some time within their lives. In my case I only visited one between the ages of 2 to 10, it was a confusing place, with adults talking about me and seemingly planning out my life. I just wanted to play and go home as soon as I could. They generally monitored my breathing and checked how well I could move. If you (someone affected by DMD) can get this service it's well worth it, as monitoring is vital in preventing emergency admissions. Sadly because the monitoring in general stopped for me I indeed ended up needing an emergency admission fighting for my life in intensive care. So I know how vital this is.

Extract;
...Every six months I was going to the muscle clinic to get progress updates, they would check how far I could walk before getting tired. My lung
capacity was checked with a peak flow meter, you basically blow into a device that has an arrow moved by the air you expel...

Find out more about my life experiences with medical care and with other forms of care in my book DMD Life art & me and buy here; http://duchennemen.net16.net/buymybook.html and here and 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.

A little bit of Good care goes a long way!

2012-02-08T07:58:00.000-08:00

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...

2012-02-07T14:11:00.000-08:00

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...

2012-02-06T12:19:00.000-08:00

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 characteric 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 elarged because muscle was actually dying but not because of 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...

2012-02-05T13:20:00.000-08:00

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%....

2012-02-04T12:48:00.001-08:00

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...

2012-02-02T13:59:00.000-08:00

####################################### 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?

2012-02-01T10:18:00.000-08:00

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.

A Mother's Intuition....

2012-01-31T08:51:00.000-08:00

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...

2012-01-30T13:42:00.000-08:00

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...

2012-01-29T12:58:00.001-08:00

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

2012-01-27T07:39:00.000-08:00

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

2012-01-26T08:30:00.000-08:00

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

2012-01-25T09:57:00.000-08:00

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

2012-01-24T13:36:00.000-08:00

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

2012-01-23T11:51:00.000-08:00

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

2012-01-22T10:23:00.001-08:00

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

2012-01-19T11:37:00.000-08:00

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....

2012-01-18T10:58:00.000-08:00

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

2012-01-17T13:31:00.000-08:00

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

2012-01-16T10:41:00.000-08:00

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

Resourcefulness

2012-01-15T16:25:00.000-08:00

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

2012-01-12T10:09:00.000-08:00

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

2012-01-11T11:03:00.000-08:00

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

2012-01-10T16:53:00.000-08:00

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