Jake, diagnosed with ATPL, a rare brain disease, experienced severe cognitive and physical decline, leading to his eventual confinement to a locked-in syndrome state. For 10 months, he became completely immobile, relying on ventilation and feeding tubes while in hospice care. During this period, he felt increasingly isolated, as medical staff ceased to interact with him. A significant turning point occurred when a perceptive doctor recognized Jake's potential consciousness, paving the way for eventual recovery and advocacy for awareness of ATPL.
I went through this six months to live, rapid decline, and then ended up in Locked-In Syndrome for 10 months, and recovering in the hospital for three years and change.
Hey, I don't know if you can hear me - but if you can, do that again.
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