A man who claims to be one of the only people to have survived locked-in syndrome has shared his terrifying story – recalling being aware of everything happening around him but not being able to physically respond.
Jake Haendel survived a rare and terminal progressive brain disease that left him unable to move or speak – but still completely conscious.
In 2017, when Haendel was 28, he was newly married and working as a head executive chef. However, after inhaling a toxin he ended up experiencing debilitating symptoms and eventually went to the hospital to have them checked out.
He reported feeling ‘weird’ – including his voice sounding higher pitched and his balance getting increasingly worse. He went to the hospital where he was given an emergency MRI and waited for the results.
‘I think I still thought I would go home, it would be like every other time I was in the hospital – they give me meds, they figure out what’s wrong,’ Haendel shared on TikTok, where he regularly posts about his recovery.
However, life would never be the same for the Boston man.
‘There were about eight different doctors in the room with somber looks and the doctors kind of looked at me and they said “I’m so sorry, you have six months to live. You have an extremely rare brain disease.”‘
Haendel was diagnosed with toxic progressive leukoencephalopathy, a rare brain disease that left him with locked-in syndrome.
Toxic progressive leukoencephalopathy is a disease of the white matter of the brain, caused by exposure to substance use, environmental toxins, or chemotherapeutic drugs.
‘I was trapped in my own body. It felt like my future was taken away, and I started thinking about all the things I’d never get to do,’ he explained in the caption for a TikTok video sharing his story.
‘I didn’t know how to process it, except to say to myself, “I’m f**ked,”‘ he continued. ‘But that wasn’t the end of my story.’
Haendel was told he would slowly lose function in his own body, which he did.
‘Everything they said would happen… happened,’ he recalled. ‘I lost all my function – I couldn’t talk, couldn’t move, and had to get a feeding tube.’
He was told that after one month, he would lose the ability to walk, after the second month he wouldn’t be able to sit in a wheelchair, and month three and four would leave him bed-bound and not able to eat, swallow and talk.
In month five, he was told he would slip into a coma which is stage four of the disease – but he did not.
Instead, while he lay in the neuro ICU, he noticed people were no longer paying attention to him but rather talking like he was no longer present.
‘The medical staff stopped talking to me, as if I wasn’t there. At the time, I didn’t know I had locked-in syndrome. No one had told me yet,’ he explained.
‘I was trapped in my own body.’
Haendel was eventually moved to a care facility since doctors still believed he was in a coma but with his vital signs were strong enough to be moved.
In a previous interview with the Guardian in 2020, he recalled realizing he had some small control over his eye movement in May 2018, sparking hope that he could recover.
In July, his doctor noticed a small movement in his wrist and within days he could blink in response to questions.
He was then transferred to the brain injury unit at the Spaulding rehabilitation hospital in Boston where be continued to recover.
In recent videos online, Haendel is seen walking and working on his speech.
