A man described as ‘brain dead’ became the first to recover from an extreme form of locked-in syndrome, which paralyzed him so completely he couldn’t even blink – something patients with the condition say used to communicate in the past – and even write books.
In 2017, Jacob Handel was living a normal life as a chef in Boston, Massachusetts.
But within just a few weeks, his life was turned upside down after he was diagnosed with acute progressive toxic leukoencephalopathy, which in turn progressed to locked-in syndrome.
Locked-in syndrome can be caused by brain trauma, infection, or exposure to toxins and results in slow, complete paralysis. Jacob found himself paralyzed and unable to speak or blink for a few months.
“By the fifth month, I was in the fourth stage, which they said no one ever recovers from,” Handel said. “They told me I would go into a coma and die.”
He is the first person to recover from stage 4 acute progressive toxic leukoencephalopathy.
Jacob, now 35, says “everything changed after what happened. Everything is much more positive in every way.
At age 27, he developed a strange set of symptoms, involving a high-pitched voice, dizziness and balance problems. Doctors at a hospital in Worcester, Massachusetts, initially suspected Jacob had had a stroke, but tests revealed it was much worse than anyone could have imagined.
“Eight doctors were in my room and I knew right away it was bad news,” Jacob said.
He was told he would lose the ability to walk within a few weeks, would be in a wheelchair soon after, and would lose the ability to speak within a few months.
First there was chronic pain, then a fever, and three months later he was paralyzed. The famous news, THE The Diving Bell and the Butterfly, was written by a man with locked-in syndrome, blinking his left eye to select a letter, but Jacob lost the ability to even do that.
“It’s like being trapped: your brain is totally intact, but you can’t communicate with anyone,” he told British newspaper SWNS.
Unable to move or speak, he could hear everything around him but had no way of letting people know he was still there. This included some juicy gossip among the nurses who mistook it for brain death. At one point, Jacob began to wonder if he was really dead and was hallucinating.
After 10 months, some nurses noticed he was moving his wrist, and all hell broke loose among his doctors.
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“They told me to do it again, and it was my only chance, so I focused everything I could on the movement of my wrist.”
He regained the ability to blink, allowing him to communicate for the first time in almost a year. The first words he spoke were “I love you” to his family.
The rehabilitation lasted 18 months, during which Jacob learned basic movements and how to speak again. He later regained his ability to walk through surgeries and physical therapy, and by December 2020 had returned home to 24-hour care, being the only person known to have recovered from the illness .
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In 2021, Jacob co-founded a mobile app, Ahoi, designed to help people with disabilities address accessibility challenges while on the go.
“Before this happened to me, I was always a fun, outgoing guy, but deep down I was sad and depressed,” Handel revealed of his journey. “Now, despite all the challenges, I appreciate the little things. But it remains a strange and traumatic time, it will take a long time to recover from it.
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