Tuesday, March 25, 2014

Locked-In Syndrome

This week, we're reading The Diving Bell and the Butterfly, all about Jean-Dominique Bauby.  I thought it might be a good time to talk about the syndrome, how a person ends up this way, and what it's really about.

So what is it exactly?  It causes you to be completely paralyzed.  That means no swallowing, or breathing, or talking or moving your fingers or toes, let alone something as drastic as walking.  All you can do is blink (and sometimes, if the case is really severe, not even that.)

You're still you inside your head.  You can see and hear everything around you, you're fully cognitive, fully aware of your surroundings, awake and able to think, but you can't move a single muscle.  You are, for all intents and purposes, trapped in your own body.

The disease isn't something you can contract.  Your brain stem is severely damaged, but your upper brain is completely normal, which is what causes the paralysis.  Usually, it stems from something else.  Lou Gehrig's disease, multiple sclerosis, and of course, like Jean-Dominique Bauby, a massive stroke.  It can also be caused by a traumatic brain injury, such as from a car accident or falling in the absolutely wrong way.

While there are cases of recovery, most specifically Kate Allat, if you fall victim to locked-In Syndrome, chances are you are never going to recover.  Partial recovery is more common, and more expected.

Probably the most famous case of Locked-In Syndrome is Stephen Hawking, who has suffered from ALS.

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