A former bodybuilder was diagnosed with locked-in syndrome — the term for a neurological disorder where you’re conscious but cannot move your body — and his symptoms first began with him “dropping things.”
In the middle of 2023, Tony McCue, now 63, said he thought he was just getting clumsy as he began stumbling and “dropping things.” But this past October, McCue, who is from the English town of Grimsby, was diagnosed with motor neuron disease (MND). In the U.K., his diagnosis is often used interchangeably with the one for the neurological disorder Amyotrophic Lateral Sclerosis, which physicist Stephen Hawking had.
McCue, who cannot speak now and has to type his thoughts, shared that after he sought medical care for his initial symptoms, he would often “get sent home after hours” in the emergency department, according to The Daily Mail, via SWNS.
“I had fallen so many times and hurt myself each time” McCue added, saying that he’s sharing his struggle 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.”
“Getting to the stage of being unable to walk before getting any help was very difficult for me and everyone around me,” McCue said.
His wife Karen, 50, shared that for her husband, “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.”
Tony McCue (right) with his wife Karen.
SWNS
“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?” she told the outlet.
The family has started a GoFundMe to raise money for their everyday expenses, with Karen vowing to donate anything left over.
“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,” she said. “I want to help other families as well later on that are going through what I’m having to go through right now.”
“He looks very very thin now, he’s still losing weight” in spite of the feeding tube, Karen said. He’s lost approximately 70 lbs., she added, explaining, “We’re trying our best to get as much in as we can, but you can only tolerate so much, can’t you?”
She shared that her husband “may not have much longer with me … I’m not ready to [lose] him.”
The average life expectancy for someone with ALS is two to five years, Verywell Health explains, as the person eventually becomes fully paralyzed and unable to breathe without the aid of a ventilator.
