There's some things......

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...

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..

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....

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...

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...

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

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

To see how a futher lack of monitoring nearly killed me then please read and buy my book DMD Life art & me; http://duchennemen.net16.net/buymybook.html



Foreword

I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time.

Some things never change...

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

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

Find out what my absolute favourite flavour was by buying and reading my book DMD Life art & me here; http://duchennemen.net16.net/buymybook.html





Foreword

I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time.

Coat Catastrophe...

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

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

Find out what happened next by reading and buying my book DMD Life art & me here; http://duchennemen.net16.net/buymybook.html



Foreword

I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time.

Childhood complacency...

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

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

Read about my wake up call in my book DMD Life art & me; http://duchennemen.net16.net/buymybook.html




Foreword

I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time.

Mechanical moving...

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

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

Read more about this and find more gems in my book DMD Life art & me; http://duchennemen.net16.net/buymybook.html



Foreword

I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time.

Flying Friday

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

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

Find out what else happened during my flight which could be described as slightly comical or slighty scary but I'll leave that up to you! You can buy my book here; http://duchennemen.net16.net/buymybook.html



Foreword

I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time.

Keeping things straight...

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

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

Find out more in my book DMD Life art & me here; http://duchennemen.net16.net/buymybook.html




Foreword

I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time.

Things DMD can't take...

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...

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...

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...

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...

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...

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...

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.