I had locked-in syndrome – I’m one of the only people to survive

A man who claims to be one of the few people to survive lockdown syndrome has shared his terrifying story, recalling being aware of everything happening around him but unable to physically respond.

Jake Haendel survived a rare and terminal progressive brain disease that left him unable to move or speak, but still fully conscious.

In 2017, when Haendel was 28, he was newly married and working as a chef. However, after inhaling a poison, he developed debilitating symptoms and eventually went to the hospital to have them examined.

He reported feeling “weird” – including that his voice was getting higher pitched and his balance was getting worse. He went to the hospital where he had an emergency MRI and waited for the results.

“I guess I still thought I was going to go home, it was going to be like every other time I was in the hospital – they give me meds, they figure out what’s going on,” Haendel said on TikTokwhere he regularly posts about his recovery.

However, life would never be the same for the man from Boston.

‘There were about eight different doctors in the room with somber looks and the doctors looked at me and 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 abuse, environmental toxins, or chemotherapeutic drugs.

‘I was trapped in my own body. “It felt like my future was being taken away and I started thinking about all the things I could never do,” he explained in the caption of a TikTok video sharing his story.

“I didn’t know how to process it other than telling myself, ‘I suck,’” he continued. “But that wasn’t the end of my story.”

Haendel was told that 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 have a feeding tube.’

He was told that after a month he would no longer be able to walk and that after the second month he would no longer be able to sit in a wheelchair (stock image)

He was told that after a month he would lose the ability to walk, that after the second month he would no longer be able to sit in a wheelchair, and that by the third and fourth months he would be bedridden and unable to walk. can eat and swallow. and talk.

In month five he was told he would go into a coma, the fourth stage of the disease, but that didn’t happen.

Instead, while in the neuro-ICU, he noticed that people were no longer paying attention to him, but rather talking as if he was no longer present.

‘The medical staff stopped talking to me, as if I wasn’t there. I didn’t know at the time that I had lock-in syndrome. No one had told me yet,” he explained.

‘I was trapped in my own body.’

Haendel was eventually transferred to a health care facility because doctors still believed he was in a coma, but his vital signs were strong enough to be moved.

In an earlier interview with the Guardian in 2020, he recalled realizing he had some control over his eye movements in May 2018, raising hopes he could recover.

In July, his doctor noticed a slight movement in his wrist and within days he was able to blink in response to questions.

He was then transferred to the brain injury unit of Spaulding Rehabilitation Hospital in Boston, where he continued to recover.

In recent videos online, Haendel can be seen working on his speech.