04 May 2010
Science editor, BioNewsAppeared in BioNews 556
Learning to Live with Huntington's Disease: One Family's Story
Published by Jessica Kingsley Publishers
ISBN-10: 1843104873, ISBN-13: 978-1843104872
Buy this book from Amazon UK
Author Sandy Sulaiman, who has Huntington's, and her close family make the book a joy to read and not just because they're its stars. Her daughter-in-law describes the family as 'journalists or natural born writers'. Each family member contributed a chapter describing how Huntington's affects their life, and the book's power comes from the clarity, emotion and frankness of their writing. It's like reading an issue of Heat or SHE magazine.
Several patient websites I visited raved about the book and it's little wonder. Huntington's is a horrible disease, but the family are so upbeat they're bound to inspire others. The book is littered with humour in adversity. Take this story by Sandy's eldest son Bromley:
'We had all just walked into the living room... Danny, my brother, was standing by the main light switch on the wall. I was standing in front of him talking to mum. Before I go on, you have to understand mum has a tendency to unexpectedly jerk forwards or backwards and head-butt innocent bystanders, not on purpose (at least I think not), but due to HD [Huntington's Disease].
'So I was unexpectedly head-butted. As a reflex, my head shot back into my brother's head. His head then flew back and hit the light switch. The lights went out. We stood in the darkness, shocked at what had happened, with at least two of us nursing a bumped head and wondering if everything going black meant concussion had set in. Mum was first to break the silence. 'Why did you turn the lights out, I was talking to you?' she said...'
The story is littered with such gems, including jokes about ketchup ending up on ceilings and the average lifespan of a toilet seat. The book explains that Huntington's affects fine motor control so Sandy applies the same force to a cup as to a car door, with predictable results.
Beyond the slapstick, the writing is often heart-wrenching. Sandy and Bromley writing about the day her driving licence was taken away is deeply moving. The shadow hanging over the family's life is palpable.
Much more than a first-person tear-jerker though, the book informs as it entertains. For people as clueless about Huntington's as I was, the Introduction rams the horror home. Sandy describes it as having 'the physical effects of Parkinson's Disease mixed up with the mental deterioration of Alzheimer's... It's terminal, but it takes its time, decades sometimes'.
She outlines the symptoms - gradual mental, emotional and physical decline coupled with personality changes, a cumulative loss of autonomy and the ongoing worry of it being passed on to your descendants. She says it's like 'being hit by a series of punches from a heavyweight boxer'.
Beyond the symptoms themselves, almost every aspect of being a member of a family with Huntington's is covered. Bromley writes about his difficult adolescence after discovering the family had HD. Bromley's wife, Chantel, explains her decision to marry him, despite knowing he could develop Huntington's. Sandy's sister Wendy describes how she feels being the only child of three who didn't inherit the Huntington's gene.
So who would I recommend this book to? Well, it boasts recommendations to patients, relatives and healthcare professionals. Appealing to such a wide audience seems like a tall order but, after reading it, the book succeeds. It's as readable as Cosmo and as informative as a textbook. Funny, harrowing and thought-provoking in equal measure, it should be on the reading list of anyone with the slightest interest or involvement in Huntington's Disease.
Buy Learning to live with Huntington's Disease: One Family's Story from Amazon UK.