When Jozsef Forrest felt his ankle ‘dropping’ during a gruelling obstacle race, he assumed he had trapped a nerve.
But the strange symptom was actually the first sign of motor neurone disease (MND) – diagnosed when he was just 24.
Mr Forrest, now 26, from Bedford, first noticed something was wrong during a Spartan run – a five-kilometre race featuring a series of demanding obstacles.
After the race in May 2024, the National Rail worker searched online for possible causes of ankle weakness and concluded it was likely to be a trapped nerve.
‘I wasn’t expecting it to be the worst thing. I thought it would just be a trapped nerve or something,’ he said.
But just a month later his partner, Natasha Chumber, 26, noticed his foot ‘slapping the ground’ as he walked while the couple were on holiday.
Concerned, he booked an appointment with his GP when they returned to the UK in September 2024, after also experiencing weakness in his left shoulder while working out.
A barrage of tests, including nerve conduction studies – which measure the speed at which nerves carry electrical signals – eventually revealed he was showing early signs of MND.
Jozsef started experiencing symptoms of the debilitating condition at just 24-yers-old
MND is a progressive neurological condition that affects the brain and spinal cord. Over time it damages the nerves that control movement, eventually leaving patients unable to walk, speak, swallow or breathe independently.
Around 5,000 adults in the UK are living with it, with most people diagnosed in their 60s. Life expectancy for roughly half of patients is between two and five years from the onset of symptoms.
Muscle twitches and a weak grip are among the early warning signs, along with weakness in the leg or ankle – symptoms Mr Forrest began to experience at just 24.
‘It was difficult. It’s the shock mainly, especially at the age as well, it wasn’t expected at all,’ he recalled.
Mr Forrest was prescribed Riluzole by his GP – the standard drug used to slow the progression of the disease – though there is currently no cure.
‘It was definitely difficult to process to begin with,’ he said. ‘You’re in a sort of slump and you have to try and carry on doing what you’re doing.’
He now relies on a wheelchair to get around but is determined to keep his independence for as long as possible, focusing on his administrative job at National Rail.
‘If you’re not working, you’re not really doing anything, and that’s worse.’
It was only when his girlfriend, Natasha (pictured right) noticed his foot slapping the floor that he contacted his GP
‘I’m determined to be as mobile as I physically can. When I first noticed symptoms, I was doing a 5k obstacle course, and now I’m getting around in a wheelchair.
He added: ‘My legs and finger have stopped working as they used to, and I’m now struggling with fatigue as well. But it’s been while a long time since my diagnosis and I’m still quite mobile.’
‘My speech breathing and all of those super important things are completely normal.’
But because the couple are both working, the financial support they can access in terms of a disability grant is limited – despite needing to install ramps in their home to make it more accessible.
‘Even though we are both earning still, it’s a significant amount of money that would need to be spent,’ Mr Forrest said.
‘It’s just difficult for people in our position because I want to carry on working and we both want to carry on working and we both want to carry on as much as we can, but we’re sort of being punished for doing that.’
The couple is also hoping to save for a more accessible bed – where both sides move independently – which will enable Mr Forrest to continue to live independently whilst allowing the couple to maintain as normal a relationship as possible.
For the determined young man, these modifications means maintaining his dignity.
‘It means I’m not struggling to have a wash on my own or get in and out of bed and stuff like that. It’s just trying to keep things as normal as possible.’
To help ease the pressure on the young couple, Mr Forrest’s colleagues have set up a GoFundMe page.
In response, Mr Forrest said: ‘It’s quite emotional and humbling to see people I used to go to school with donate.’
Scientists hope there will soon be a simple blood test which will be able to detect who will develop the devastating disease a decade before symptoms appear.
Experts at the John Hopkins University School of Medicine revealed last year revealed they had been successful in spotting the neurodegenerative disorder by looking at specific proteins in the blood.
They hope the findings will help identify new ways of treating the disease before symptoms become debilitating.