Runner, 37, blamed his wrist pain on his office job…but it was a devastating ‘locked in syndrome’ that slowly ‘froze’ his body
A father of one who attributed his wrist pain to sitting too much at his desk has said it was actually a sign of a fatal and life-destroying motor neurone disease (MND), also known as ‘locked in syndrome’.
Sam Hayden-Harler from Kent first noticed a problem in early 2021 when he struggled to open bottle caps.
Shortly afterward he began experiencing pain in his wrist and hand, which he attributed to carpal tunnel syndrome — a common nerve problem — or RSI.
It was only after the The 37-year-old two-time London Marathon runner visited his GP, who referred him to a physiotherapist, who concluded that the problem was likely neurological in nature.
Sam Hayden-Harler from Kent first noticed a problem in early 2021 when he struggled to open bottle caps without effort. Pictured: Sam with husband James
It comes as Coronation Street prepares to bid a heartbreaking farewell to character Paul Foreman this week following his brave battle with MND. Mr Hayden-Harler was invited to the cobbles to meet actors Peter Ash (pictured left), who plays Paul, and Daniel Brocklebank, who plays his husband, Reverend Billy Mayhew, after hearing of his story
In March 2022, just over a year after he first noticed symptoms, he was given the devastating diagnosis of ALS, the most common form of which is amyotrophic lateral sclerosis (ALS).
Now, Mr. Hayden-Harler, an events specialist, can currently walk around his home with a cane, but he uses a wheelchair when he is away. Carers also visit per day, to help him shower and dress.
He is fully aware that his diagnosis is terminal and wants to make the most of the time he has left.
The life expectancy of about half of people with the condition is only two to five years from the onset of symptoms. But they can worsen rapidly.
Remembering his diagnosis, he said Metro the conversation with his neurologist was ‘partly hazy’, as he stared out the window ‘overcome with emotion’.
And even within two years, his symptoms have worsened.
“I get angry when I look back at pictures because three years ago I could hold a cocktail and now I can’t even hold a pencil,” he said The Mirror.
‘My legs feel wobbly, it’s like I’m drunk without any booze.’
It was only after the 37-year-old two-time London Marathon runner visited his GP, who referred him to a physiotherapist, that he discovered the problem was likely neurological
But even when he started experiencing pain in his wrist and hand, he attributed it to carpal tunnel syndrome, or RSI
He and his husband James have not yet told their seven-year-old son how serious his illness is.
“He knows very little more than that my arms are not doing well,” he added.
‘But at the Paralympics we told him that there are blind people who run marathons, and there are people with one leg who run races.
‘We try to teach him that everything is possible, even if he has a disability.’
ALS is a rare condition in which parts of the nervous system are gradually damaged.
This rare and incurable condition attacks the brain and nerves, leaving patients unable to move, eat and eventually breathe.
Some people can live up to 10 years, and in rare cases even longer.
Around 5,000 adults in the UK have ALS and the chance of someone developing the condition during their lifetime is one in 300.
In March 2022, just over a year after he first noticed symptoms, he was diagnosed with ALS, the most common type of which is amyotrophic lateral sclerosis (ALS).
In 2021, the government secured £50 million to fund research into a cure for MND. With that in mind, he launched a GoFundMe to raise £50,000 for the MND Association, future research and to help him complete his bucket list
Muscle twitching and a weak grip are among the first signs of ALS, 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 offer treatments that can reduce the impact of the disease on a person’s life.
In the UK, approximately 5,000 people and in the US 30,000 people suffer from this 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 ALS.
It comes as Coronation Street prepares to bid a heartbreaking farewell to character Paul Foreman this week following his brave battle with ALS.
Mr Hayden-Harler was invited to meet actors Peter Ash, who plays Paul, and Daniel Brocklebank, who plays his husband, the Reverend Billy Mayhew, on the cobbled street after hearing of his story.
He said: ‘They were the sweetest guys. Dan has messaged me a few times and he recently said: ‘Don’t worry, even when this story ends, we’re still going to keep beating that drum, we’re still going to keep talking about MND.’
‘That’s so important because I still don’t talk about it with my husband James.
“I’ve planned my funeral, but talking about it with someone close to me is too much. When James wants to talk to me about it, I say, ‘No, not now.’
‘I’m very happy with my life, we talk about it when we’re there.’
In 2021, the government released £50 million to fund research into a cure for ALS.
With that in mind, he launched a GoFundMe to raise £50,000 for the MND Association, future research and to help him complete his bucket list.
For example, he enjoys the simple things, like making fresh lemonade, starting a reading club and taking his husband James and seven-year-old son on vacation.
So far he has raised over £21,000.
Mr Hayden-Harler added: ‘MND takes a toll. It takes a toll on your body and ultimately your voice. But the one thing it can’t take is the love I have inside for James, our son and my family.
‘I’m not stupid, I know what’s ahead of me and I could get myself pretty depressed thinking about what I’m going to look like next year.
‘But as a family we take each day as it comes and that makes the future a little less scary.’