Where advice falls apart

Where advice falls apart

Lately whilst reading news online I've seen plenty of advice columns with headlines along the lines of this;

WALKING REDUCES HEALTH RISKS UP TO 30%

I find it slightly amusing with a mixture of ennui when I read things like that because obviously I can't walk. I feel concerned briefly about my health but then think my health is already severely compromised. Advice like this is for the vast majority of able bodied people and often is helpful for those who are health conscious. It only reminds me of what I can't do and offers little in the way of useful practical advice.

This was brought to the fore recently when I was looking for advice to alleviate insomnia. I was fed up of being awake when I needed desperately to sleep. The most common advice was to get out of bed after twenty minutes and walk around and do something. Virtually impossible for me unless I wake up my mother and bother her which I am not doing because I don't want to transfer my sleeplessness to her. My mother needs her sleep far more than I do, so invariably I lay awake for one to two hours pleading for sleep to return. I looked some more for advice and reading or writing a journal came up, both impossible when I'm on a mask connected to my ventilator in a dark room without my glasses and “paralysed” from DMD.

Finally I found mental approaches which I tried but were ultimately unhelpful. The most helpful thing was shown to me by my massage therapist Tracy who taught me a technique of rubbing the tips of my thumbs. This encourages the release of melatonin which helps you naturally fall asleep. I have just enough movement in my left thumb to accomplish this feat and it's been partly successful some days better than others. This technique in conjunction with prayers has definitely helped me and I'm thankful for that.

Often when coming against difficulties the advice is mostly framed around moving or doing physical things, which is not applicable to those with severe disabilities which restrict movement. You definitely need to be resourceful in this situation and use mental solutions where possible. Maybe advisers need to open their minds to those who cannot use physical solutions and come up with alternatives and truly think out of the box instead of using that term for something meaningless.

EBOOK available here; https://www.smashwords.com/books/view/69702

Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1

Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1

My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857

All links available in my website here; http://duchennemen.net16.net/Buy-my-books/

My art can be viewed here; http://www.redbubble.com/people/thebigg2005


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

Feeling but not moving

AVAILABLE in EBOOK and PAPERBACK versions

I have what I call Duchenne's induced paralysis (a term I invented), I can move my hands and legs only a few centimeters but basically nothing else moves although crucially I still have the ability to feel. That can be a blessing and a hardship. One of the hardest things usually happens at 5AM, that being my legs get terribly itchy. I could wake my mother but I desperately don't want to do that because she needs to sleep. All I can do is tough it out waited for the itch to go. It's a small problem in the grand scheme of things but it sure is annoying! The best part about feeling is the control it gives me when painting using my computer mouse. I need very fine motor skills to follow any sketched lines I drew.

Extract...
.... I indeed do still feel although it’s a royal pain when something is aching or needing to be scratched! When I get extreme back ache whilst sitting in my chair, I need to call my mother and she repositions me using my hoist. What takes five seconds for the non disabled, takes me ten minutes of re-jigging!

Read more about Duchenne's induced paralysis in my book DMD LIFE ART & ME!!

EBOOK available here; https://www.smashwords.com/books/view/69702

Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1

Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1

My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857

All links available in my website here; http://duchennemen.net16.net/Buy-my-books/


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.

True Care...

Mothers are the unsung heroines of DMD and for those without a mother there's always that caregiver that goes the extra mile! These amazing heroines/heroes get a disturbed night to help turn us so we can get to sleep. They are ever vigilant and on guard looking out for us and brightening our days. Even gratitude seems very pale compared to them. Thank God for them and their skills!

After an operation as a child my mom was fantastic,

Extract;
...I had to be turned frequently every night, which meant my mother missed out on her much needed sleep....

Read more about the exemplary care I had and still have from the unsung heroine in my life in my book DMD LIFE ART & ME!

Buy the fantastic EBOOK version here; https://www.smashwords.com/books/view/69702

Also available through my website here; http://duchennemen.net16.net/Buy-my-book-s/


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.