Ankle Weakness During Race Leads to Motor Neurone Disease Diagnosis at 24
When Jozsef Forrest experienced his ankle 'dropping' during a demanding obstacle race, he assumed it was merely a trapped nerve. However, this unusual symptom turned out to be the initial indicator of motor neurone disease, with the diagnosis confirmed when he was just 24 years old.
Mr Forrest, now 26 and residing in Bedford, first noticed the issue while participating in a Spartan run—a five-kilometre event packed with challenging obstacles. Following the race in May 2024, the National Rail employee researched potential causes for his ankle weakness online, concluding it was likely nerve-related.
'I wasn't expecting it to be the worst thing. I thought it would just be a trapped nerve or something,' he recalled.
Partner's Observation Prompts Medical Consultation
Just one month later, while on holiday, his partner Natasha Chumber, 26, observed his foot 'slapping the ground' as he walked. Concerned by this and additional weakness in his left shoulder during workouts, Mr Forrest scheduled an appointment with his GP upon returning to the UK in September 2024.
A series of tests, including nerve conduction studies that measure electrical signal speed in nerves, ultimately revealed early signs of motor neurone disease.
Understanding Motor Neurone Disease
Motor neurone disease is a progressive neurological condition impacting the brain and spinal cord. It gradually damages nerves controlling movement, leading to loss of independence in walking, speaking, swallowing, and breathing.
Approximately 5,000 adults in the UK live with MND, with most diagnoses occurring in individuals in their 60s. Life expectancy for about half of patients ranges from two to five years from symptom onset.
Early warning signs include muscle twitches, a weak grip, and weakness in the leg or ankle—symptoms Mr Forrest began experiencing at the young age of 24.
'It was difficult. It's the shock mainly, especially at the age as well, it wasn't expected at all,' he said.
Treatment and Daily Challenges
Mr Forrest was prescribed Riluzole by his GP, the standard medication to slow disease progression, though no cure currently exists.
'It was definitely difficult to process to begin with,' he noted. 'You're in a sort of slump and you have to try and carry on doing what you're doing.'
He now uses a wheelchair for mobility but remains determined to maintain independence, focusing on his administrative role at National Rail.
'If you're not working, you're not really doing anything, and that's worse,' he explained.
Financial and Accessibility Struggles
Despite both partners working, financial support for disability grants is limited, even as they need to install ramps at home for accessibility.
'Even though we are both earning still, it's a significant amount of money that would need to be spent,' Mr Forrest stated. 'It's just difficult for people in our position because I 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 saving for an accessible bed with independently moving sides to support Mr Forrest's independence and maintain their relationship.
'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,' he added.
Community Support and Future Research
To assist the young couple, Mr Forrest's colleagues established a GoFundMe page.
'It's quite emotional and humbling to see people I used to go to school with donate,' he responded.
Scientists are hopeful for a simple blood test that could detect the disease a decade before symptoms appear. Experts at Johns Hopkins University School of Medicine reported success last year in identifying neurodegenerative disorders by analysing specific blood proteins, aiming to develop treatments before symptoms become debilitating.
What Is Motor Neurone Disease?
Motor neurone disease is a rare condition primarily affecting people in their 60s and 70s, but it can occur in adults of all ages. It results from issues with motor neurones in the brain and nerves, which gradually cease functioning, though the exact cause remains unknown.
While having a close relative with MND or frontotemporal dementia may increase risk, it does not typically run in families. Early symptoms include:
- Weakness in the ankle or leg, such as difficulty climbing stairs
- Slurred speech
- Difficulty swallowing
- Weak grip
- Gradual weight loss
If experiencing these symptoms, consult a GP who may refer you to a neurologist. For those with a family history, genetic counselling is available to discuss risks and testing options.
