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

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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

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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