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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It had been a while since we’d done anything a bit maverick, Polly decided, so she booked me in for a flying lesson. She had stumbled upon a charity called Aerobility boasting that it offered ‘disabled people, without exception, the opportunity to fly an aeroplane’. Right, she thought, we’ll test that to destruction. So, on…

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      In August 2019 my brother Mark died, he was 55. Circumstance kept us apart but we were close in spirit, fate having dealt us a similar hand. When I think of Mark, of his dry wit, his wisdom, his kindness, the man he became, I can’t help but remember our childhood, our…

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I have an extreme, second generation, form of Facioscapulohumeral [FSHD] Muscular Dystrophy with related Chronic Obstructive Pulmonary Disease [COPD], resulting in wheelchair use and 24 hour-a-day ventilation via a tracheotomy. Not mention a hard-earned familiarity with umpteen medical terms. The name Facioscapulohumeral describes the muscle groups usually affected most – ‘facio’ = facial ‘scapulo’ =…

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If you followed my previous blog, How To Be An Inspiration you may have wondered why it tailed off and what happened next. Over the next few posts, I shall endeavour to catch you up with the relevant goings-on over the last five years. But why start a new blog now?Well, firstly I’ve missed blogging.…

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