Given a Voice

  Back in September, just before Polly and I went on our cruise, I had been visited by the Compass Assistive Technology Service, usually referred to simply as the Compass Team. If you have read my previous posts, and particularly Things are Rigged, you may remember that, in early July 2018, I had lost the…
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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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Muscular Dystrophy UK is a UK charity
focusing on muscular dystrophy


Meet Stephen

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