Man makes full recovery after devastating illness left him 'locked inside his body'

'You never know how strong you are until you have to be' - these words are the motto of Jacob Haendel's website.

For the former chef from Boston, Massachusetts, 2017 was the year in which the then 35-year-old's strength was put to an existential test. He was diagnosed with a rare and serious disease: acute toxic progressive leukoencephalopathy. This disease, which damages the brain through toxic influences, led to Haendel suffering from 'locked-in syndrome' (LiS), a state of complete paralysis in which he was fully conscious but virtually immobilized.

How it all began

As reported by the Express, Jacob Haendel's first symptoms began at the age of 27. First, his voice changed - it became high-pitched and shrill. Then came balance problems. When he started to have problems driving, he finally decided to go to the hospital.

After further tests, the initial suspicion of a stroke gave way to the devastating diagnosis: acute toxic progressive leukoencephalopathy. He would soon lose his mobility and ability to speak. Express quoted Jacob Haendel saying:

By the fifth month, I was in stage four, which they said no one ever recovers from. They told me I would go into a coma and die.

The turning point

By the third month, the patient was already completely paralysed and felt like he was locked in his own body, as he was still aware of everything around him. According to Express, he remembers one moment as particularly traumatic:

[The staff] discussed withdrawing life support. I was in so much pain that I was ready to go anyway.

According to the NHS, locked-in syndrome cannot be completely cured and is an enormous burden for those affected and their relatives. In most cases, LiS patients can communicate with their eyes - but even this was not initially possible for Haendel.

He was aware that he only had one chance to save his life. With all his remaining strength, he managed to move his wrist slightly. This minimal movement convinced the doctors not to give up on the patient.

A long road to recovery

Using all his willpower, Jacob Haendel trained himself to blink over the next few months and learned to communicate using a letter board. This enabled him to express his feelings and thoughts, especially his love for his family and friends. Communicating the words 'I love you' was the biggest and most emotional milestone in Haendel's healing process to date.

In the following years, he spent several stays in hospitals and rehabilitation centers. Intensive physiotherapy and medical interventions enabled him to walk and speak independently again. He returned home in 2020.

No one would have thought this possible: Jacob Haendel is the first patient in the final stage of acute toxic progressive leukoencephalopathy to undergo such a successful recovery process.

Since then, he has even co-founded an app that helps people with disabilities to overcome barriers to mobility. Like many other people who have gone through a long journey of illness and recovery, Haendel's perspective on life has changed fundamentally during this process:

Before this happened to me, I was always a fun, sociable guy, but deep down I was sad and depressed. Now, even with all the challenges, I appreciate the little things.

This article has been translated from Oh!MyMag DE.

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Sources used:

Express: 'Brain dead' man trapped inside body heard staff debate about turning off his life support

jhaendelrecovery

NHS: Disorders of consciousness