A father-of-one who 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, from Kent, 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.
Sam Hayden-Harler, from Kent, first noticed a problem in early 2021 after struggling to open bottle tops without effort. Pictured, Sam with husband James
It comes as Coronation Street prepares to say a heartbreaking goodbye to character Paul Foreman this week following his brave struggle with MND. Mr Hayden-Harler was invited to the cobbles to meet the actors Peter Ash (pictured left), who plays Paul, and Daniel Brocklebank, who plays his husband, vicar Billy Mayhew after they learnt of his story
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 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.
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.
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.’
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
But even when he began experiencing pain in his wrist and hand he put it down to carpal tunnel syndrome or repetitive strain injury
He and husband, James, haven’t yet told their seven-year-old son the full extent of his illness.
‘He knows very little other than that my arms are poorly,’ he added.
‘But with the Paralympics, we’ve said to him that there are people who are blind who run marathons, there are people with one leg who run races.
‘We’re trying to teach him that anything is possible, despite living with a disability.’
MND is a rare condition that progressively damages parts of the nervous system.
The rare and incurable condition affects the brain and nerves, robbing sufferers of their ability to move, to eat and eventually breathe.
Some people may live for up to 10 years, and, in rarer circumstances, even longer.
Around 5,000 adults in the UK have MND and there is a one in 300 risk of developing the condition over the course of a person’s life.
In March 2022 — just over a year after first noticing symptoms — he was diagnosed with MND, of which the most common type is amyotrophic lateral sclerosis (ALS)
In 2021, the government secured £50million towards funding research for a cure for MND. With that in mind, he launched a GoFundMe to raise £50,000 for the MND Association, future research and help him complete his bucket list
Muscle twitches and a weak grip are among the early signs of MND, along with weakness in the leg or ankle, slurred speech and weight loss.
Some tremors are normal and can be caused by caffeine, stress and age.
There is no cure but doctors can provide treatments to help reduce the impact it has on a person’s life.
Around 5,000 people in the UK and 30,000 in the US have the condition.
In June, Leeds Rhinos star Rob Burrow, 41, died after a four-and-a-half-year battle with motor neurone disease.
Locked-in syndrome (LIS) is a rare neurological disorder that can also occur in some progressive cases of MND.
It comes as Coronation Street prepares to say a heartbreaking goodbye to character Paul Foreman this week following his brave struggle with MND.
Mr Hayden-Harler was invited to the cobbles to meet the actors Peter Ash, who plays Paul and Daniel Brocklebank, who plays his husband, vicar Billy Mayhew, after they learnt of his story.
He said: ‘They were the loveliest men. Dan has messaged me a few times and he said recently: “Do not worry, even when this storyline ends, we will still keep banging that drum, we’ll still keep talking about MND.’
‘That’s so important, because I still don’t talk about it to my husband James.
‘I’ve planned my funeral, but discussing it with someone close is too much. When James does try to speak to me about it, I go: “no, not now.”
‘I’m quite happy living my life, we’ll talk about that when we get there.’
In 2021, the government secured £50million towards funding research for a cure for MND.
With that in mind, he launched a GoFundMe to raise £50,000 for the MND Association, future research and help him complete his bucket list.
This includes enjoying the simple things like making fresh lemonade, setting up a book club and taking his husband James and seven-year-old son on holiday.
To date, he has raised more than £21,000.
Mr Hayden-Harler added: ‘MND takes a lot. It takes your body and eventually your voice. But the one thing it can’t take is the love inside I have for James, our son and my family.
‘I’m not silly, I know what lies ahead and I could really depress myself if I thought about this time next year and what I’m going to be like.
‘But as a family we just take each day as it comes and that makes the future a little bit less scary.’
