A father-of-one from Kent, blamed his wrist pain on being desk-bound has told how it was actually a sign of deadly and life-wrecking motor neurone disease (MND), also known as ‘locked in syndrome’.
Sam Hayden-Harler, first noticed a problem in early 2021 after struggling to open bottle tops.
Soon afterwards, he began experiencing pain in his wrist and hand, which he put it down to carpal tunnel syndrome — a common nerve problem — or repetitive strain injury.
It was only after the 37-year-old two-time London Marathon runner visited his GP who referred him a physio, that he discovered the issue was likely neurological.
THE MOST COMMON TYPE OF MND
In March 2022 — just over a year after first noticing symptoms — he received the devastating diagnosis of MND, of which the most common type is amyotrophic lateral sclerosis (ALS).
Now, Mr Hayden-Harler, an events specialist, is currently able to walk around his home with a stick, but uses a wheelchair when out. Carers also visit once a day, to help him shower and dress.
He is acutely aware of the terminal nature of his diagnosis, and wants to make the most of the time he has left.
LIFE EXPECTANCY OF MND
Life expectancy for about half of those with the condition is between just two and five years from the onset of symptoms. But these can worsen rapidly.
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Recalling his diagnosis he told Metro the conversation with his neurologist was ‘a blur in parts’, as he stared out the window ‘overcome with emotion.Â
And even within two years, his symptoms have progressed.
‘I get upset when I look back at photos, because I was able to hold a cocktail three years ago and now, I can’t even hold a pencil,’ he told The Mirror.
‘My legs feel wobbly, it’s like being drunk without the drink.’
