How many people even knew what ALS was before the ice bucket challenge? My mom was diagnosed with something so rare, that when I would say, Its like ALS, as it was the closest reference I had, nobody knew what I meant. The following is from one of the most amazing women I know, who was married to a beautiful man, and was by his side until the end of his journey with ALS : For those of you concerned about drought and the ice bucket challenge, try this,...try, for just one day, encasing your body in cement. Try not being able to speak, to eat, to scratch an itch. Imagine you are thirsty, or hungry, or in pain, but you cannot speak and tell anyone about it, your muscles are so weak you cannot even move to adjust yourself in your chair. Imagine knowing that you are eventually going to suffocate to death, unable to draw a breath because you are so weak that you cannot even command your muscles to breath. And all the while knowing that you have a disease so rare that most of the world doesnt even know what it is, that the pharmaceutical company doesnt have interest in developing a drug for you because you just wont bring them any funds. Imagine you dont have even the slightest hope of trying a new drug, a new treatment, simply because there isnt any to try...knowing that there is no hope, no cure, and that in general no one cares, not because people are evil but because they just dont know. Then imagine that for once, some seemingly silly thing like dumping ice water on people brings to the forefront of peoples minds this horrible thing that is slowly killing you, brings funding, knowledge, and concern, that while its not going to produce a cure, that it is producing money, and that MAYBE, just maybe, your family might benefit from those funds, and be able to get a wheelchair, or a ramp, so that you MIGHT be able to enjoy something as simple as a outting with the people you love before you die, and after youve considered all of that, you can tell me that you think a small bucket of water is a mindless way to bring much needed resources to the monster that is amytrophic lateral sclerosis. Im ALWAYS for saving water, but lobby to limit lawn waterings, or dont get your car washed for an extra couple of weeks….
Posted on: Fri, 22 Aug 2014 01:05:50 +0000
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