Into the Dark (part three)

  My transfer to the Royal Brompton meant that I began to turn, if not a corner, then a long, slow bend in the right direction, albeit with a few trip-hazards along the way. I came to inside a white room, still beset with the, now familiar, combination of hallucination and pain. I lay on…
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Into the Dark (part two)

  I spent a week in the St Helier hospital ICU where doctors and other staff struggled to stabilise me enough to make a transfer to the Royal Brompton safe. It was, I can state without a hint of hyperbole, the worst week of my life. Despite being heavily sedated, I was in a great…
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Into the Dark

This post is difficult to write. If you have followed this blog so far you will know that I have been at death’s door on a number of occasions but, thus far, found it wheelchair inaccessible. In September 2018 death installed a ramp. We returned from our cruise relaxed and happy. There had been a…
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All at Sea

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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Masking Trouble

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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Things are Rigged

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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Muscular Dystrophy UK is a UK charity
focusing on muscular dystrophy


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Welcome to Every Breath I Take,
a (mostly) humorous look at the
ups and downs of living with severe
disability at home, with a family, a
24/7 care team and, a large black


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Inspirational Quotes

“Always remember you are braver than you believe,
stronger than you seem, smarter than you think and
twice as beautiful as you’ve ever imagined. ”

Dr. Seuss