There are plenty of things that can go wrong in your brain, but one neurologist recently revealed “the most terrifying neurological condition” he’s ever seen.
People with the super rare condition can feel totally normal on the inside — but on the outside, their lives are changed forever.
“As a neurologist, I see a lot of devastating conditions but this has got to be one of the worst,” Dr. Bing said in an Instagram video.
“Imagine being fully aware, able to feel everything, hear everything and see everything, and able to think clearly — but completely unable to move or speak, and only able to blink and move your eyes up and down,” he said.
He’s talking about locked-in syndrome (LIS), which is caused by damage to a specific part of the brain stem, most commonly due to injuries like strokes, demyelinating disease — a condition that damages the protective covering around the nerve fibers — and other traumatic injuries.
People with locked-in syndrome, also known as pseudocoma, are completely conscious but unable to do anything other than move their eyes or blink. They often need a tracheotomy to help them breathe, as well as a gastrostomy tube (G-tube) to ingest food and water.
The paralysis means they can’t speak or communicate, and don’t even have the ability to react to pain — all of which can make locked-in syndrome difficult to diagnose, and some people suffering from the condition have been mistakenly declared brain dead.
In fact, that’s exactly what happened to 36-year-old Jake Haendel, who was diagnosed with a rare terminal brain illness. He deteriorated quickly into what appeared to be a vegetative state, and one day listened in as doctors described him as “brain dead.”
“I heard them say I was brain dead and it’s time to start considering withdrawing life support,” he told People. “I was contemplating, am I brain dead? How can I think, how do I have memories? So even though I was having those thoughts that this is going to be over soon, I was like, ‘Oh, don’t do that, I’m still in here.’
“It was the worst you can imagine. t was like being a prisoner in solitary confinement, but worse. You’re totally paralyzed, you can’t move, talk or signal. I was just talking to myself in my head. It was more of survival to keep my brain going and kind of talk myself out of a full panic attack.”
Diagnosis of locked-in syndrome involves conducting several tests, including MRIs and EEGs. It’s extremely rare, impacting just 1% of stroke victims, but it also has no cure — and while some patients can sometimes recover some motor functions, making a full recovery is highly unlikely.
Jake was one of those exceptions: Doctors eventually figured out that he was still conscious, and through a “very grueling, slow process,” he’s been able to relearn how to talk and move.
But his example shows that condition can hit young people as well as old.
“Unfortunately, I’ve seen a few cases of locked-in syndrome and they were all young and middle-aged people and they all suffer from vertebral dissection and had strokes,” Bing said.
According to a recent CDC report, more people aged 18-64 are having strokes. Mercifully, however, LIS is still a very rare condition. While no prevalence studies have been published, the Genetic and Rare Diseases Information Center (GARD) estimates that fewer than 1,000 people in the US have LIS.
Nonetheless, the fact that such a terrifying reality exists is just one more reason to take brain health seriously.
“That is why taking care of your brain and taking steps to prevent things like strokes is so important,” Bing says. “Because most strokes don’t kill you, they just leave you severely disabled.”
Some ways to keep your brain healthy include getting enough sleep, exercising regularly, maintaining a diet rich in vitamins and fiber, and learning new things. And protect your head, especially if you’re doing something risky.
“The quote ‘I’m here for a good time not a long time’ doesn’t really apply to things like strokes, because we’re able to keep you living longer, but the quality of life wouldn’t be very good.”
