The Ice Bucket Challenge has so far only raised superficial awareness of the disease. Jimmy Fallon didnt go to the Outpatient Neurology lobby during ALS Clinic day and see the horror show Im going to see when I go on Wednesday. Drooling, asphyxiating, patients slumped over in wheelchairs, lucid - but unable to speak - crying out loud. And everyone else in the room knowing that its only a matter of time until they end up the same way. THAT IS unless they go on a ventilator, and, eventually, lose control of every muscle except their eyes. AND that Congress just cut Medicare funding to pay for (pretty cheap) eyegaze computer equipment that could help patients express themselves to caregivers and the Internet, leaving them with locked-in syndrome. Congress ALSO cut funding for ModelTalker and other voice banking systems, which would allow patients with children to grow up hearing their natural voice, instead of a robots. Lets make sure that some of this new awareness is directed at Lawmakers who are deliberately increasing the level of hopelessness among ALS patients in the name of fiscal discipline.
Posted on: Mon, 18 Aug 2014 23:07:53 +0000
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