Locked-in syndrome is a rare condition. If you survive the event causing it, then your chances of dying in the first four months are 90%. I’m really, really sorry if that’s doomsday to anyone going through this. However, that’s what the doctors told my family. I’m just quoting the professionals. I wasn’t told anything. Having experienced a brainstem stroke resulting in Locked-In syndrome, I can understand why the doctors tell families this. It damages you’re ability to cough. So eating any kind of food is life threatening.
However, if you’re frantically looking for anything about locked-in syndrome, please know everyone has a different experience. These are a few books available. Click on the picture to follow the link to Amazon:
This is the leading account of Locked-In syndrome. I’ve tried to get a copy in Australia. I couldn’t. An American friend mailed me a copy. I can’t be sure which countries it’s available in, but it’s not available in Australia.
Kate is now a doctor, so this is an encouraging perspective.
This Kate still makes the journey between America and New Zealand.
Peter is now studying to become a speech pathologist.
Lastly, my own addition to this illustrious company:
I wish you the best.