'My trapped nerve was really Motor Neurone Disease' - Bedford runner diagnosed at 24

Jozsef Forrest, 26 and from Bedford, felt his left ankle dropping during a Spartan run – a 5k run with obstacles – in May 2024.

Thinking he'd just injured himself during the course, Jozsef researched potential causes and put it down to a trapped nerve from the strain of intense exercise.

But when he was on holiday with his girlfriend, Natasha Chumber, 26, in Gran Canaria just a month later in June 2024, he noticed his foot "slapping the ground" as he walked, so vowed to get checked out when he returned to the UK.

Jozsef visited the doctors for the first time in September 2024 also complaining of weakness in his left shoulder he'd noticed while working out at the gym.

After tests to examine the electrical pulses through his nerves and muscles they confirmed he had MND – a progressive neurological condition affects the brain and spinal cord, causing muscle weakness, wasting, and paralysis.

The typical age for diagnosis is around 67 but Jozsef was just 24 when he received the news.

He has been prescribed Riluzole, the standard drug used to slow down the progression of symptoms slightly, and has regular physiotherapy and psychotherapy appointments.

Jozsef said: "It was difficult. It's the shock mainly, especially at that age as well, it wasn't expected at all. I wasn’t expecting it to be the worst thing. I thought it would just be a trapped nerve or something.”

Natasha added: "It was definitely difficult to process to begin with. You're in a sort of slump and you have to try and carry on doing what you're doing."

Jozsef now uses a self-propelling wheelchair to get around. He strives to keep his independence for as long as possible and continues to work in his planning and admin role at Network Rail.

He said: "If you're not working, you're not really doing anything, and that's worse. 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. My legs and fingers have stopped working as they used to, and I’m now struggling with fatigue as well.

"But it's been quite 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.”

Because Jozsef and Natasha are both working, the support they can access from the council in terms of a disability grant is limited, meaning they are left to foot the bill for modifications to their home.

The couple is currently looking to convert their bathroom into a more accessible wet room and install a ramp into the garden.

They will have to fund this privately since they are not eligible for council support - with the work estimated to cost over £7,000.

"Even though we are both earning still, it's still a significant amount of money that would need to be spent," Jozsef 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 double bed where both sides move independently - which would help Jozsef to move to a standing position when getting out of bed.

This is so they can live more like a couple again, instead of sleeping in separate single beds, with Jozsef on a hospital bed they were given through the NHS.

For Jozsef, having these modifications means maintaining his dignity.

He said: "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."

Jozsef’s colleague set up a GoFundMe page to help the couple navigate these extra costs.

He is overwhelmed at the amount of support they have received.

"Seeing people I used to go to school with donate, it's quite emotional, it's humbling," he said.