Jacob Haendel. A man labelled “brain dead” has become the first ever to recover from an extreme form of locked-in syndrome which rendered him totally paralysed. In 2017, Jacob Haendel was living a normal life as a head chef in Boston, Massachusetts. But he 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 and forced his body would slowly shut down. An extreme form of locked-in syndrome is a condition in which a patient is aware but cannot move or communicate verbally due to complete paralysis and can be caused by a brain trauma, and infection, and exposure to toxins. (Image: Jacob Haendel / SWNS)
A man who was labelled as “brain dead” has made medical history by becoming the first person to recover from an extreme form of locked-in syndrome, after he overheard doctors discussing turning off his life support. Jacob Haendel, a former head chef in Boston, Massachusetts, had his world turned upside down in 2017 when he was diagnosed with acute toxic progressive leukoencephalopathy, which developed into locked-in syndrome and caused his body to shut down.
Despite being fully aware of his surroundings, he was unable to move, speak, blink or communicate due to complete paralysis. In a terrifying turn of events, he could hear medical staff debating whether to switch off his breathing machines. However, he managed to move his wrist and later developed blinking skills. After years of struggle, he has made an incredible recovery and can now speak and move independently.
He is the first person ever to recover from stage 4 acute toxic progressive leukoencephalopathy, a condition that can be triggered by brain trauma, infection, and exposure to toxins. While it remains unclear how Jacob contracted the disease, he believes his previous career as a chef and exposure to chemicals may have played a role.
At 35, Jacob’s life took a dramatic turn when he was diagnosed with a rare, terminal brain illness. He shared: “Everything has changed after what happened – my outlook, my feelings. Everything is much more positive in all regards,” reports the Mirror US.
Jacob says: “I now appreciate the little things in life – even being able to actually hold a cup of water!” (Image: Jacob Haendel / SWNS)
At 27, Jacob began experiencing unusual symptoms. He recalled: “I felt kind of weird one day. It started with my voice – it became high-pitched, and people started pointing it out. He also noticed his balance was off, saying, “My balance was a little off too. I could still walk, but I was holding onto walls in my house.”
Initially dismissing these signs, his condition deteriorated. “I started swerving when I was driving, and that led me to walk into the hospital one day,” Jacob said.
In Worcester, Massachusetts, doctors first thought he might have had a stroke, but further tests revealed a shocking diagnosis. Jacob recounted the moment of truth: “Eight doctors were standing in my room, and I knew right away it was bad news,” He continued, “The doctor sat on the edge of my bed and told me I had a very rare, terminal, progressive brain illness.”
The disease, acute toxic progressive leukoencephalopathy, deteriorates the brain due to toxin inhalation.
Jacob’s prognosis was grim; he would soon lose his mobility and speech. He was told his condition would deteriorate to the point where he would “likely slip into a coma and die,”. Jacob recalled: “By month five, I was at stage four, which they said no one ever recovers from. They told me I would enter into a coma and pass away.”
Jacob Haendel whilst receiving treatment in hospital for locked-in syndrome (Image: Jacob Haendel / SWNS)
As the disease took hold, Jacob endured unbearable pain. He said: “It was severe chronic pain-autonomic storming, where your body’s systems just go haywire. I had swings of 106-degree fevers, and my heart was working like I was running a marathon.”
Within three months, Jacob was completely paralysed. He said: “One of the most horrific parts was when I had an itch. I couldn’t signal anyone, and the weight of a sheet on my skin would hurt. It’s like being trapped – your brain is totally intact, but you can’t communicate with anyone.”
Trapped in his own body, Jacob could hear everything around him but was unable to respond.
He remembered: “One time I overheard the nurses talking, and one of them said, ‘I have to tell you about this really awkward hookup I had last night! ‘” “It was the funniest thing I had heard in months, and I was almost laughing inside. But then one of them said, ‘don’t worry about talking in front of him, he’s brain dead’.”
Jacob worked as a chef before he got sick (Image: Jacob Haendel / SWNS)
This led Jacob to question whether he had actually died and was just hallucinating. “It was so strange and horrible,” he said.
“They were discussing withdrawing life support. I was in so much pain, I was ready to go anyway,” For 10 gruelling months, Jacob was trapped in a locked-in state, but against all odds, his condition took a remarkable turn when medical staff spotted the faintest twitch in his wrist—a movement he hadn’t known he was capable of. Speaking on the pivotal moment, Jacob recalls, “They told me to do it again, and that was my one shot, I focused everything I could on moving my wrist.”
This slight gesture became the key to unlocking his recovery. With this glimmer of hope, doctors intensified their efforts to aid Jacob in regaining more control over his body.
He painstakingly learned to communicate by blinking slowly, which eventually led to him using a letterboard to spell out words, restoring a vital connection with the world around him. One of the most emotional milestones in his recovery was being able to tell his loved ones “I love you” through painstaking practice.
Jacob’s unwavering determination saw him move to Spaulding Rehabilitation Hospital for three transformative months, where he relearned the rudiments of daily life. The journey continued at Western Massachusetts Hospital, where he stayed an additional 15 months.
Jacob Haendel before his diagnosis of leukoencephalopathy (Image: Jacob Haendel / SWNS)
Through intensive surgeries and physical therapy sessions, he miraculously regained his ability to walk.
By December 2020, having defied every expectation, Jacob, the only individual known to have recovered from stage four acute toxic progressive leukoencephalopathy in such a manner—and perhaps one of the rare few to come back from locked-in syndrome—returned home, ready to begin anew with 24-hour care. His tale is not just one of survival; it’s a testament to the indefatigable human spirit.
Despite his remarkable recovery, Jacob continues to face daily hurdles. “I’m still learning how to walk with a cane, and my voice isn’t what it used to be,” he admits.
In 2021, Jacob took the initiative to co-found a mobile app named Ahoi, which aims to assist individuals with disabilities in overcoming accessibility obstacles while on the move. Reflecting on his journey, Jacob shared: “Before this happened to me I was always a fun, outgoing guy, but deep down, I was sad and depressed. 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.”
