I did a AMA back in December 30, 2019 about how I was suffering from locked in syndrome. This time I want people to ask me anything about my recovery in all aspects physical therapy, occupational therapy, and speech therapy. Also how I am able to ...
I was diagnosed with a terminal progressive disease called Toxic Acute Progressive Leukoencephalopathy. This put me into locked in syndrome and hospice for six months.
Here are some facts about what happened:
Memorial Day weekend 2017, I was diagnosed with Acute Toxic Progressive Leukoencephalopathy. There is no way to prove what caused my illness. The only thing they know for sure is that it was from inhaling a toxin. This disease is nicknamed chasing the Dragon syndrome, I used to smoke heroin on tinfoil, odds are it was a cutting agent.
This is my recovery journey from Locked-in syndrome (LIS), also known as pseudocoma. It is a condition in which a patient is aware but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles in the body except for vertical eye movements and blinking.
I will be making video posts as I was getting sicker leading up to me being locked in and then my miraculous recovery.
Everyone thought I was “Brain dead” not in the clinical sense of the term could hear and see the entire time. People thought I would die hundreds of times, no one has ever recovered from stage four of toxic acute progressive Leukoencephaothy
Here are some key facts about my journey to recovery:
. I was expected to die on New years eve 2017
. I was both completely locked in and in a pseudo-coma for approximately six months
. I survived six months of home care hospice on comfort measures only
. I was fully aware the entire time
. I slowly showed my first￼￼￼￼￼￼￼￼ signs of doctors thinking I might be “in there“ By beginning to be able to blink and a minor movement in my right wrist
. In the mid July 2018 I became virtually locked in I could blink for no￼￼￼￼￼￼￼￼￼ and stick out my tongue for yes
. In the end of August￼￼ 2018 I became a￼ expert￼ at nonverbal communication with a Megabee
. January 1, 2019 I began to verbalize vowel sounds
. Shortly there after I started getting mobility back in my arms legs etc.
. July 2019 my entire body was antigravity. I was working on standing and pre-gait activities. I started communicating in full sentences
I really want to share my story with others going through some more situations both family and patients. If anyone is interested in talking with me please feel free to contact me anytime. Check out my YouTube channel that I created to see how far I’ve come!
￼￼￼￼￼ Jacob Haendel - YouTube or Jacob Haendel Recovery Facebook ￼￼
The different stages of disease video https://youtu.be/22MvvkOZKMU