A Grimsby man given a shock, life-wrecking diagnosis of ‘locked-in syndrome’ has hit out at NHS doctors for failing to spot his disease earlier.
Tony McCue, 63, first began suffering alarming symptoms in the middle of 2023, but clueless medics took a year and a half to figure out the true cause of his problems — which included frequently falling over and ‘dropping things’.
The former bodybuilder initially put his stumbling habits down to simply being clumsy.
But he was told in October that he has motor neurone disease (MND), a progressive condition that affects the brain and nerves, robbing sufferers of their ability to move, to eat and eventually breathe.
Perhaps the most well-known sufferer of the condition is the physicist Stephen Hawking, who was diagnosed with the disease in 1963, aged just 21. He died in 2018.
Within just over a year, Mr McCue had lost the ability to care for himself, talk and eat.
The illness has also resulted in dramatic five stone weight loss — and he continues to shed muscle, according to his wife Karen, 50.
‘He is a strong-willed person, he’s always been very strong physically as well, he’s done bodybuilding over the years, so you can imagine the difference,’ said Mrs McCue.
Tony McCue, 63, pictured with his wife Karen McCue, 50, was diagnosed with with Motor Neurone Disease (MND) in October 2024
Since his diagnosis he has lost five stone in weight making him look drastically different and needing full-time care
Typing his thoughts about his delayed diagnosis, Mr McCue said: ‘After a year or so of suffering and waiting to find out what was going on with my body, I felt shocked at the diagnosis and very let down by the NHS.
‘They are meant to be there to help when you need it, not just send you home after hours in A&E with no answers.
‘I had fallen so many times and hurt myself each time, but I had no confidence in the hospital to help.
‘Getting to the stage of being unable to walk before getting any help was very difficult for me and everyone around me.
‘I would like to bring awareness about this disease to the front of doctors’ minds, as there are so many people not getting their diagnosis until it’s too late.’
Around 5,000 adults in the UK have MND and there is a one in 300 risk of developing the condition over the course of a person’s life.
It mainly affects people in there 60s and 70s, but it can affect adults of all ages.
Early symptoms can include weakness in your ankle or leg, like finding it hard to walk upstairs; slurred speech, finding it hard to swallow, a weak grip, and gradual weight loss.
The couple is trying to raise money through GoFundMe to help pay for day-to-day care costs. The fundraiser has already raised more than £1,200 of its £20,000 goal
Ms McCue, pictured with tony on their wedding day eight years ago, says any money raised over the cost of care costs will be donated to the Motor Neurone Disease Association
Experts aren’t entirely sure what triggers MND, but having a close relative with the condition, or a related condition called frontotemporal dementia, can mean you’re more likely to get it.
Speaking of the ordeal, Ms McCue said: ‘Every day is different, he’s now got no speech. He can’t walk at all, not even aided. He can’t eat, he has to be tube fed.
‘It’s hard work, absolutely devastating that it wasn’t picked up earlier.
‘It was just devastating. Tony was originally a little bit in denial, he thought he could beat it and felt that he could try and build his muscles back up, but obviously you can’t, can you?
‘He looks very very thin now, he’s still losing weight even though he’s on a PEG feed [feeding tube].
‘We’re trying our best to get as much in as we can, but you can only tolerate so much, can’t you?’
The couple are now attempting to raise cash through GoFundMe to help pay for day-to-day care costs, as Ms McCue has been forced to give up work to care for her husband full time.
She added: ‘This fundraiser, it’s not really about the money, it’s just that I can’t work and care for my husband 24/7, I’m just too exhausted.
‘We’re not spenders, it’s literally just for day-to-day costs so I can care for him. Anything that’s left will go straight to the MND association.
‘I want to help other families as well later on that are going through what I’m having to go through right now.’
A Northern Lincolnshire and Goole NHS Foundation Trust spokesperson said: ‘We would welcome the opportunity to speak to Mr and Mrs McCue directly about his/her concerns, and would ask that he/she contacts our PALS team so we can arrange this.’
