2018 was the most difficult, most draining and most frightening year of my life – but it did have one shining highlight; Polly and I celebrated our silver wedding anniversary. Anyone who knows us as a couple knows that I effectively won the love-lottery the day I met Polly in February 1991 when we were…

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I was discharged from the Royal Brompton hospital at the end of August 2018 (see Things are Rigged) in a much-improved state, but with two significant changes to my day to day life. Firstly, being fed via the RIG inserted into my abdomen, and secondly, using the ventilator 24 hours a day. Both changes were…

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In early July 2018, on the day England beat Columbia 4-3 in a World Cup penalty shoot-out, I was admitted into St Helier hospital. Over the previous two days, I had lost the ability to speak and to swallow and to breathe unassisted by the ventilator; a tipping point after months of gradual decline. Eating…

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  In the faraway year 2000, three momentous things happened: my son was born, my father died and, I had a gall stone attack. My father Roger’s death, aged 66, was sudden and unexpected. He had FSH Muscular Dystrophy, but a milder, more typical manifestation of the condition than the godawful version inherited by two…

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    Four machines keep me alive: A ventilator, a cough assist, a suction machine, and a nebuliser. These machines, used in combination, enable me to keep my lungs clear of the deadly secretions that accumulate within. Unchecked, the secretions block the bronchioles and can become infected, causing pneumonia or, more immediately, it reduces the…

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