Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Monday, April 8, 2013

Mittens and Duct Tape To Defeat ALS?

This morning I saw a tweet from a woman with ALS --

7h If u want to understand my life , put on thick mittens then dress, eat, and type. ALS sucks!
Several weeks ago there was a posting by a man with ALS on the patientslikeme forum --
As I was fighting an itchy nose last night I had an idea how to let unaffected people have a glimpse of what life with this disease is like.  Today I challenged my facebook friends to go for two hours without touching their face or head.  Not to scratch their nose or move the hair out of their face.  So far the shortest time is fifteen minutes and the longest is 39 minutes.
Perhaps at a big ALS event, the healthy ALS advocates can volunteer to duct tape themselves with constrictions that are small outward reminders of what ALS steals from people.  Arms strapped down or a mouth covered or feet taped into an awkward position or immobilized fingers would represent a small fraction of the reality of ALS.

How would it be if people calling on legislators in Capitol Hill in May wore their duct-tape limiters... and then handed the legislative assistants, Members of Congress, or Senators some nice big mittens to wear during their meetings?  Oh, and no scratching of any itches allowed.

A stunt?  Yes.  Would it be remembered?  Absolutely!

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