Differences in care

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

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

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

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

Read more about my care from my family, school and the medical side in my book DMD Life art and me and buy here; http://duchennemen.net16.net/buymybook.html



Foreword

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