A parent of a boy who blamed his wrist pain on sitting at a desk has revealed it was actually a sign of a deadly and life-destructive 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 caps.
Shortly after, he began to experience pain in his wrist and hand, which he attributed to… carpal tunnel syndrome, a common nerve problem, or repetitive stress injury.
It was only after the A 37-year-old two-time London marathoner visited his GP, who referred him to a physiotherapist and discovered the problem was likely neurological.
Sam Hayden-Harler, from Kent, first noticed a problem in early 2021 after struggling to open bottle caps effortlessly. Pictured here, Sam with her husband James
The event comes as Coronation Street prepares to bid a heartbreaking farewell to character Paul Foreman this week following his brave battle with ALS. Hayden-Harler was invited to the cobbles to meet actors Peter Ash (pictured left), who plays Paul, and Daniel Brocklebank, who plays her husband, vicar Billy Mayhew, after they heard about her story.
In March 2022, just over a year after noticing the first symptoms, he received the devastating diagnosis of ALS, the most common type of which is amyotrophic lateral sclerosis (ALS).
Today, Mr Hayden-Harler, a wedding planner, can walk around his house with a cane, but uses a wheelchair when he goes out. Carers also visit him once. one day, to help him shower and get dressed.
He is deeply aware of the terminal nature of his diagnosis and wants to make the most of the time he has left.
For about half of those with the disease, the life expectancy is between two and five years from the onset of symptoms, but these can worsen rapidly.
Recalling his diagnosis, he said: Metro The conversation with his neurologist was “confusing in parts,” as he stared out the window “overwhelmed with emotion.”
And even in two years, her symptoms have progressed.
“I get angry when I look at the photos, because three years ago I could hold a cocktail and now I can’t even hold a pencil,” she said. The mirror.
‘My legs feel shaky, it’s like being drunk without the drink.’
It was only after the 37-year-old, a two-time London marathoner, visited his GP, who referred him to a physiotherapist, that he discovered the problem was likely neurological.
But even when he began to feel pain in his wrist and hand, he attributed it to carpal tunnel syndrome or a repetitive stress injury.
He and his husband, James, have yet to tell their seven-year-old son the full extent of his illness.
“He knows very little beyond the fact that my arms are in bad shape,” he added.
‘But with the Paralympic Games, we have told them that there are blind people who run marathons, there are people with only one leg who run races.
“We are trying to teach him that everything is possible, despite living with a disability.”
EMN It is a rare disease that progressively damages parts of the nervous system.
This rare and incurable disease affects the brain and nerves, depriving those affected of their ability to move, eat and eventually breathe.
Some people can live up to 10 years, and in rarer circumstances, even longer.
Around 5,000 adults in the UK have ALS and there is a one in 300 risk of developing the disease over a person’s lifetime.
In March 2022, just over a year after noticing the first 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 ALS. With that in mind, he launched a GoFundMe campaign to raise £50,000 for the ALS Association, future research, and to help him complete his bucket list.
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Early signs of ALS include muscle spasms and a weak grip, along with leg or ankle weakness, difficulty speaking, 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 suffer from 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 ALS.
This 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 the cobbles to meet actors Peter Ash, who plays Paul, and Daniel Brocklebank, who plays her husband, vicar Billy Mayhew, after they heard about her story.
She said: ‘They were the most lovely men. Dan has messaged me several times and recently he said to me: ‘Don’t worry, even when this story is over, we’ll keep banging that drum, we’ll keep talking about ALS.’
‘That’s very important, because I still haven’t talked about it with my husband James.
“I’ve planned my funeral, but talking about it with anyone close to me is too much. When James tries to talk to me about it, I tell him, ‘No, not now.'”
“I’m very happy living my life, we’ll talk about that when the time comes.”
In 2021, the government secured £50 million to fund research into finding 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.
This includes enjoying the simple things like making fresh lemonade, starting a book club and taking her husband James and seven-year-old son on vacation.
To date, it has raised over £21,000.
Mr Hayden-Harler added: “EMN takes a lot out of you. It takes your body and ultimately your voice. But the one thing it can’t take away is the love I have for James, our son and my family.
‘I’m not stupid, I know what’s coming and I could get very depressed if I thought about this time next year and what I’m going to be like.
“But as a family we take each day as it comes and that makes the future a little less scary.”
