‘Healthy’ man, 32, who felt dizzy and tired develops paralysing ‘locked-in syndrome’ and only communicates by blinking
By Owen Leonard,
2024-09-03
AN ACTIVE young Brit who started feeling dizzy and tired developed a rare condition where he’s “locked inside” his own body – and can only communicate by blinking.
Oli Coppock, 32, has locked-in syndrome – a rare disorder which means his entire body – apart from the muscles that control his eye movements – is paralysed.
He was struck down with the condition just months after seemingly make a good recovery from going under the knife to remove a brain tumour .
He was originally diagnosed with a grade-two brain tumour but was able to return to the gym and live a normal life following surgery and radiotherapy .
But the digital marketer was rushed hospital in May after feeling ill.
Doctors made a shock discovery, finding he had fluid on the brain and had suffered a cardiac arrest .
Oli has since been diagnosed with locked-in syndrome.
Now he can only communicate by blinking and is being fed through a tube.
His girlfriend Beth Wright, 33, has been left “heartbroken” by the situation as she thought they could “move on with their lives” after the tumour was removed.
She said: “It’s just heartbreaking. I’ve been with him through the brain tumour diagnosis and when he was told it had grown and if he should have surgery or not.
“He was told that there was a chance he would be unable to breathe or need a tracheotomy (a tube going in the airway through a small hole in the throat) but we were told all of these things could have been temporary.
“We also never thought it would all happen to him.
“He came out of the surgery and we thought he was like a warrior and that was it and started to move on with our lives.”
Oli had also been diagnosed with Multiple Sclerosis (MS) , a chronic autoimmune disease that affects the central nervous system, last year.
He then found out he had the tumour.
After a holiday to Ibiza with Beth, he discovered the tumour had grown and was told to decide if he wanted it removed or not.
He chose to go ahead with the operation in November last year but Beth says he was “completely back to normal” just a couple of months after the surgery.
Beth, a recruitment consultant, said: “He was in hospital for ten days and then came home to me and went back to the gym and he was back at work.
“You wouldn’t think that anything had ever happened to him, he just bounced straight back.
“Everything was completely back to normal – he was walking, was really active and was doing some DJing as part of his side hustle.
“We even went to Spain again and he was doing pull-ups in the park.”
Oli’s cognitive functions are normal but he is relying on a tracheotomy to support his breathing.
What is locked-in syndrome?
Locked-in syndrome is a terrifying condition where someone remains aware but cannot move or speak.
This is because of complete paralysis of nearly all the muscles in the body – except those that control eye moments.
So a patient’s communication is limited to signals like blinking.
The syndrome is caused by damage to a specific part of the brainstem, a structure connecting the cerebrum of the brain to the spinal cord and cerebellum.
Damage can be caused by tumours, traumatic brain injury, brain bleeding, harm to nerve cells, circulatory diseases and poisoning.
A tracheotomy is required to help with breathing, and a small tube in the stomach to help receive food and water.
Beth, of Warrington, Cheshire , said: “He can wiggle his fingers a little bit and can shrug his shoulders sometimes to say no.
“Everything else is fine – he can still understand everything I can say to him.
“I say ‘Oli, do you remember when we went to Benalmádena?’ and he blinks.
“I know that he doesn’t like bananas so I will ask him and then he shrugs his shoulders to say no.
“Or if I ask him if he likes steak, then he will blink.
“It’s like he’s on life support because he’s unable to do anything for himself apart from blinking, listening and looking.
“His only entertainment is visitors and listening to music.”
Beth met Oli on dating app Hinge four years ago and she’s described him as “just a lovely person” who had “loads of friends.”
She said: “He was the nicest person you would ever meet, that’s what everyone has said. He’s just great.
“The most upsetting thing is me is that I say to him ‘Oli are you alright’ and he blinks to say yes, that he is okay – even though he isn’t.”
FAMILY AND FRIENDS MAKE PLEA
Oli’s family and friends are now worried he will be discharged from hospital and will have to go into a care home for the “rest of his life.”
They have now set up a GoFundMe page to pray for Oli’s rehabilitation, with the aim that going in a private facility would help him get better in the future.
Beth said: “The doctors haven’t said it but we are worried he’s going to end up in a care home when he needs to be least given a chance to have rehabilitation.
“He shouldn’t just be left in a care home at 32-years-old for the rest of his life.
“We don’t even know when he will be discharged – it could be soon or it could be in months so we are living each day, day to day.
“In a private facility, he would be able to get a regular physio and have speech and language therapy as he’s not used his own voice in 14 weeks.”
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