DMD Life Art and Me by Ian A Griffiths
|DMD Life Art and Me by Ian A Griffiths|
|Reviewer: Sue Magee|
|Summary: Ian has Duchenne Muscular Dystrophy, a severe, fatal muscle-wasting disease and he tells the story of his life and how he has coped. It's a story that heart-warming and heart breaking and should be required reading for anyone who might come into contact with a DMD sufferer. Highly recommended. Ian was kind enough to be interviewed by Bookbag.|
|Buy? Yes||Borrow? Yes|
|Pages: 332||Date: October 2010|
|Publisher: Grosvenor House Publishing|
|External links: Author's website|
Ian Griffiths suffers from Duchenne Muscular Dystrophy - a form of muscular dystrophy which causes muscle degeneration. It begins in early childhood with difficulty in walking and progresses to cause problems with breathing and all the voluntary muscles. Ultimately it's fatal. Men and boys – it's linked to the X chromosome so affects only males (it seems that I'm in error about this -see the comment from Eunice Watson below AND Ian's just told me that he knows of three girls who are affected) – with the disease have a life expectancy of between the late teens and mid-twenties. Ian's in his mid-twenties now and he's written DMD Life: art and me to explain what it really feels like to live with the disease. And when I say 'really feels like' I do mean that. Ian doesn't gloss over anything.
When I picked the book up I thought I might not like the format. Ian takes his life year by year and devotes a chapter to each, with additional chapters for important or traumatic events. In actual fact the format is perfect as it allows you to appreciate how the disease progressed, how Ian felt and how his family coped with what was happening to them all. From the initial shock of finding that your child has a fatal condition to the realisation that you're going to be your son's primary carer throughout his life – you'll realise what Ian's mother and father are going through as well as Ian's feelings because Ian is very open about what they have done for him and how grateful he is.
I was conscious that at each stage I thought that Ian's situation really could not get any worse – and then there would be some further degeneration (such as the loss of the swallowing mechanism) or emotional pain. Ian decided to sell his beloved Playstation 2 because using his fingers on the mouse was too tiring. Until this happened the PS2 had filled a large part of his life. The steady decline is heart-breaking to the reader but Ian is remarkably, almost unbelievably, positive and his occasional bouts of depression usually occur when other people have let him down. I wanted to go and park my tank on their lawn.
What surprised me is how little medical assistance he has had other than when there was a crisis. Occasionally I wondered if intervention at an earlier date might not have prolonged his life expectancy or improved the quality of his life at each stage of the illness. For this reason I really do believe that it should be read by everyone who might be in a position of caring for someone who suffers from DMD. Staff on general wards in hospital really didn't seem to know how to cope with his needs. He should have had better dietary advice as soon as swallowing became a problem. Ian should have been listened to rather than people assuming that they knew what was best for him.
People in wheelchairs are people first and wheelchair users second. Ian is a normal man with a man's reactions to women – but he didn't get advice about dealing with his sexual feelings. He's open about this and about how he deals with it. It made me realise that we need to completely rethink our approach not just to illnesses such as DMD but to the people who suffer from them. Ian's doing his bit to make things better for all DMD sufferers – have a look at his website and click on the link opposite to watch his video.
Ian published this book to make as many people as possible aware of this dreadful disease and what sufferers go through. Normally I get quite irritated if I find spelling or grammatical mistakes in books, but I was surprised to find that this time it really didn't matter at all. This is Ian telling his story in his own way and it should be required reading for everyone who might come into contact with a DMD sufferer.
I'd like to thank Ian for sending a copy of the book to the Bookbag.
Ian A Griffiths was kind enough to be interviewed by Bookbag.
You can read more book reviews or buy DMD Life Art and Me by Ian A Griffiths at Amazon.co.uk
You can read more book reviews or buy DMD Life Art and Me by Ian A Griffiths at Amazon.com.
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Eunice Watson said:
I would just like the reviewer to correct her assertion that DMD "only affects males". It does not - females can be manifesting carriers and suffer symptoms of the disease. I myself am a manifesting carrier as well as having a 25 year old son who has Duchenne. We are both disabled.
It is hard enough getting GP's and other doctors to accept that women can have DMD withour people such as this reviewer perpetating this.