A man who claims to be one of the only people to have survived lockdown syndrome has shared his terrifying story: He remembers being aware of everything happening around him but being unable to respond physically.
Jake Handel survived a rare, terminal progressive brain disease, which left him unable to move or speak, but still fully conscious.
In 2017, when Handel was 28 years old, he was newly married and working as an executive chef. However, after inhaling a toxin he ended up experiencing debilitating symptoms and eventually went to the hospital to get checked out.
He reported feeling “weird,” including that his voice sounded higher and his balance was getting worse and worse. He went to the hospital where he had an emergency MRI and waited for the results.
“I think I still thought that I would go home, it would be like any other time I was in the hospital: they give me medicine, they find out what’s going on,” Handel shared in tiktokwhere he posts periodically about his recovery.
Jake Handel survived a rare, terminal, progressive brain disease that left him unable to move or speak, but still fully conscious (file image)
However, life would never be the same for the Boston man.
“There were about eight different doctors in the room with grim 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.”
Handel was diagnosed with progressive toxic leukoencephalopathy, a rare brain disease that left him with locked-in syndrome.
Progressive toxic leukoencephalopathy is a disease of the white matter of the brain, caused by exposure to the use of substances, environmental toxins or chemotherapy drugs.
“I was trapped in my own body. “I felt like my future was taken away from me and I started thinking about all the things I would never be able to do,” she explained in the caption of a TikTok video sharing her story.
“I didn’t know how to process it except to say to myself, ‘I’m screwed,'” he continued. “But that wasn’t the end of my story.”
Handel was told that little by little he would lose the function of his own body, and so it was.
“Everything they said would happen… happened,” he recalled. “I lost all my functions: I couldn’t talk, I couldn’t move and I had to have a feeding tube.”
He was told that after a month he would lose the ability to walk and after the second month he would not be able to sit in a wheelchair (file image)
He was told that after one month he would lose the ability to walk, after the second month he would not be able to sit in a wheelchair and that months three and four would leave him bedridden and unable to eat or swallow. and speak.
In the fifth month, he was told he would go into a coma, which is stage four of the disease, but he didn’t.
Instead, while he was lying in the neuro ICU, he noticed that people were no longer paying attention to him but were talking as if he were 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.”
Handel was eventually transferred to a care facility as doctors still believed he was in a coma, but his vital signs were strong enough for him to be transferred.
In a previous interview with Guardian In 2020, he recalled realizing he had a little control over his eye movement in May 2018, raising hopes 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 Spaulding Rehabilitation Hospital in Boston, where he continued to recover.
In recent online videos, Handel is seen walking and working on his speech.