A friend of a friend ... #ALS: their story... This is ALS. This is what Chuck and I and our four kids deal with every day. I am so thankful for all of the money donated because it will help patients with everyday needs. I laugh and cry when I watch the ice buckets dump on peoples heads because it is funny and heartwarming to me in the trenches. But most of all I want EVERYONE to know what a terrible, insidious disease this is. How it takes one thing after another away until you have nothing left except your brain, which realizes every second what you WANT to do but CANT. Every day I watch my husband try to make his body move. Try to speak clearly enough to be understood. Want to hug his children, but I have to wrap his arms around them and hold them there. Every day he is fed by someone else. Someone else has to get him a drink, scratch an itch, hold a tissue to his nose, brush his teeth, give him a shower. I use a lift to get him in and out of bed. And then I put a mask on his face because his blood oxygen level gets dangerously low at night without it. The ALS clinic is starting to talk about a feeding tube because the muscles in his throat are getting weaker. Every day I look in the beautiful faces of our four children and realize what they are missing because of this horrific disease. That my girls will not have their father to walk them down the aisle. Most likely they will not have him at their high school graduations. Since 80% of ALS patients die between two to five years after diagnosis, it is a possibility that Chuck wont even get to see our youngest on her first day of kindergarten. This is ALS. It has been a disease no one talks about because it robs the patients of the ability to talk. But now people are talking. People are dumping. People are donating. People are helping. PLEASE, learn about this disease.
Posted on: Sat, 23 Aug 2014 01:37:20 +0000
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