Super-fit father-of-three reveals how subtle hand weakness was first sign of deadly motor neuron disease: ‘I thought I had a trapped nerve’

A hardworking father-of-three has revealed the warning sign that he had developed motor neurone disease at the age of just 39.

Ryan Horsfall, from Suffolk, who works as a plumber, lost the ability to grip with his left hand on October 30.

He said: ‘About eight months ago, I was in the gym and struggling to push anything on my left-hand side.

‘I never thought anything was wrong. I had a stiff neck at the time, so I thought maybe I’d picked up an injury or had a trapped nerve.’ 

Concerned, he called his wife, Kimi, who urged him to see a doctor. 

He added: ‘I had some twitching in my bicep and when I saw the doctor, he did lots of tests and noticed the twitches were also in my leg.

‘He asked for a senior doctor and he said to me: “Have you got any idea why you’re here?”

‘I said I thought I had an injury or trapped nerve and he said “We think you might have motor neurone disease”.

‘I didn’t really take it in. It wasn’t until I got out of the hospital and phoned Kimi that we realised.

MND is a progressive neurological condition which affects the brain and spinal cord, causing muscle weakness, wasting and paralysis.

The typical age for diagnosis is around 67 years old and is most commonly found in those aged between 50 and 70 – because he was just 39 at the time of his diagnosis, which came two weeks before Christmas, Mr Horsfall is classed as having the early-onset form of the disease.

Mr Horsfall said: ‘The diagnosis nearly crushed me. It has been incredibly hard. Acceptance is the biggest thing to come to terms with.

‘Initially, you’re in a bit of denial, wanting to get another test or a second opinion. At the moment, I’m okay. But I won’t let it define me.

‘It becomes a waiting game – I ticked all the boxes for the classic symptoms.

‘Another doctor told me I had signs of MND but I didn’t fit the bill, I was young so it could be plenty of other things.’

He went for further tests with a neurologist – including an MRI and nerve ending test – which revealed he had denervation in all four of his limbs.

Wife Kimi, a hairdresser, who shares three children with her husband – Lois, eight, Jude, six, and Sydney, three -said: ‘I burst into tears when I found out.

‘Every worry under the sun came flooding in – the kids, work, the future. He is the man of the house.

‘I try hard to go upstairs and cry, but sometimes you are just sitting there, and the kids will say ‘I love you’, and you can’t help it.

‘Children are so resilient, and they can take more than we give them credit for. They’ve been incredible.’

Mr Horsfall said he was considering opting into a life-prolonging drug but that making memories of his family with a good quality of life was his priority.

The couple said they want to make as much noise as possible about the condition to raise awareness.

So far, a GoFundMe set up to help cover Mr Horsfall’s loss of earnings, adapting a new home to his needs and making memories has raised more than £62k.

Kimi added: ‘We’re incredibly grateful and we’re all immensely proud of Ryan.

‘You never understand how it feels until you’re in a situation like this.’

Around 5,000 adults in the UK are currently living with motor neurone disease, of which ALS is the most common form. The condition affects the nerves that control movement, leading to progressive muscle weakness, loss of speech and difficulty breathing.

For most patients, life expectancy is between two and five years from the onset of symptoms, although the speed of progression can vary widely.

Motor neurone disease is usually diagnosed between the ages of 55 and 75, with symptoms that worsen steadily over time.

Early signs can include muscle twitches, a weak grip, weakness in the leg or ankle, slurred speech and unexplained weight loss.

There is currently no cure, and the disease progressively robs patients of their ability to walk, speak and eventually breathe.