Fifteen years ago, writer Charlotte Raven was diagnosed with the incurable neurodegenerative disease – what did it do to her family and her marriage?

The day I found out how I was going to die began innocuously enough: the usual blur of nappy changing and tetchy texts to my husband. Life in our recently refurbished London home had settled into a rhythm, with a low-level background of domestic discontent. Arguments about wallpaper had run their course; our cats had made their peace with our one-year-old daughter, Anna; and I was pleased to have married a responsible hedonist who liked babies but never made me feel guilty for finding them boring.

That day, my husband, Tom, had gone to work early; a documentary director, he was filming a series about the London Underground. After a sleepless night, I was eating breakfast with Anna when the landline rang. It was my dad’s old friend Eric, who had been keeping an eye on him ever since my mum had died four years earlier. We were all worried because Murph (everyone called my dad Murph) had been making some bad decisions, then digging in defiantly.

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