Jacob Haendel whilst receiving treatment in hospital for locked-in syndrome – SWNSA man labeled “brain dead” has become the first ever to recover from an extreme form of locked-in syndrome, which paralyzed him so completely he couldn’t even blink—something patients of this disease have in the past used to communicate—and even write books.
In 2017, Jacob Haendel was living a normal life as a head chef in Boston, Massachusetts.
But in the space of just a few weeks, his life was turned upside down after he was diagnosed with acute toxic progressive leukoencephalopathy, which in turn progressed into locked-in syndrome.
Locked-in syndrome can be caused by brain trauma, infection, or exposure to toxins, and results in slow, complete paralysis. Jacob ended up paralyzed and unable to talk or blink for a few months.
“By month five, I was at stage four, which they said no one ever recovers from,” Haendel said. “They told me I would enter into a coma and pass away.”
He is the first ever person to recover from stage 4 acute toxic progressive leukoencephalopathy.
Jacob, now 35, says “everything has changed after what happened. Everything is much more positive in all regards.”
At 27, he developed a strange pattern of symptoms, involving a high-pitched voice, dizziness, and impaired balance. Doctors at a hospital in Worcester, Massachusetts, initially suspected Jacob had had a stroke, but tests revealed it was far worse than anyone could have imagined.
“Eight doctors were standing 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 weeks, become wheelchair-bound soon after, and lose the ability to speak within a couple of months.
First came chronic pain, then fevers, and three months later he was paralyzed. The famous novella, The Diving Bell and the Butterfly, was written by a man with locked-in syndrome, by blinking his left eye to select a letter, but Jacob lost even the ability to do that.
“It’s like being trapped—your brain is totally intact, but you can’t communicate with anyone,” he told British news outlet, SWNS.
Jacob Haendel whilst receiving treatment in hospital for locked-in syndrome – SWNSUnable to move or speak, he could hear everything around him but had no way to let people know he was still there. This included juicy gossip between the nurses who had confused him as being brain dead. At a certain point, Jacob began to wonder if he had, in fact, died, and he was hallucinating.
After 10 months, some of the nurses noticed him moving his wrist, and all heaven broke loose among his doctors.
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“They told me to do it again, and that was my one shot, I focused everything I could on moving my wrist.”
He regained the ability to blink, which allowed him to communicate for the first time in almost a year. The first words he said were “I love you” to his family.
– SWNSRehabilitation took 18 months, during which time Jacob learned basic movements and how to talk again. He then regained his ability to walk with the help of surgeries and physical therapy and by December 2020, he had moved back home with 24-hour care as the only known person to recover from the disease.
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In 2021, Jacob co-founded a mobile app, Ahoi, designed to help people with disabilities navigate accessibility challenges when out and about.
“Before this happened to me I was always a fun, outgoing guy, but deep down, I was sad and depressed,” Haendel revealed about his journey. “Now, even with all the challenges, I appreciate the little things. But it’s still been a strange and traumatic period, it will take a long time to get over.”
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