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Locked‐In Syndrome

Malon, Alex

doi: 10.1097/01.NNN.0000311164.79047.47
Department: Letter

Cedar Lake, IN

I read your review of the movie The Diving Bell and the Butterfly in the Nov/Dec issue. People should go see this unbelievable story of courage. I was diagnosed with locked-in syndrome in January 2004 after I suffered a brain-stem stroke. Medical professionals have sometimes said cruel things in earshot of me because they thought I couldn't understand. For example, they have sometimes talked about having no hope that I would get better.

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I'm better along in my recovery than some people. There are many things I can do, such as walk with the aid of a walker. This is a far cry from the bleak predictions of some of my doctors.

Two other books have been written on locked-in syndrome: Locked-In, Locked Out, by a prominent doctor named Shaw Jennings who suffered locked-in syndrome; and Kate's Journey, by Kate Adamson. Both of these survivors give the reader hope no matter how difficult the future seems.

Alex Malon

Cedar Lake, IN

©2008 American Academy of Neurology