It sucks that ALS is really underfunded because only 30k people suffer from it and its not considered an epidemic... Even Chronic Kidney Disease, and other Chronic illnesses was underfunded for decades until hundreds of thousands of people were effected.. It took MANY donations to develop solutions to manage kidney failure, and now its awesome to see donations help fund some type of solution to fund ALS. What I learned to love about the Ice Bucket Challenge, although YES SOME people may just be doing this for self-glorification, is that there are others who actually do the Challenge and go well-beyond donating $100. It may not seem like much, but for those families who have a relative, or maybe someone who is personally in the beginning stages of ALS, it means A LOT to them... Came across this article and just wanted to share in case people wanted to experience how it is to live with ALS. My eyes just skip over some cuz my heart aches just reading what they have to experience. A Mile in ALS Shoes If you would like to go beyond the bucket and experience just a tiny corner of an ALS life, I have a list of empathetic experiences for you. These are things you can do to walk for just a mile in ALS shoes. If you try one, take a little time at the end to consider that people actually living with the disease have a million miles more to go. Pick up a 10-pound weight. Now imagine its your fork and move it from your plate to your mouth repeatedly without shaking. Sit in a chair for just 15 minutes moving nothing but your eyes. Nothing. No speaking, no scratching your nose, no shifting your weight, no changing the channel on the television, no computer work. Only your eyes. As you sit, imagine: This is your life. Your only life. Borrow a wheelchair or power scooter and try to maneuver quickly through the aisles at Walmart, without speaking. Note the way people react to you. Strap 25 pounds to your forearm. Now, adjust your rearview mirror. Using none of your own muscles, have your spouse or child or friend get you dressed and brush your teeth. Write down some of the feelings you have being cared for in this way. Before you eat your next meal, take a good, long look at the food. Inhale deeply and appreciate the aroma. Now, imagine never being able to taste that -- or any other food -- for the rest of your life. Put two large marshmallows in your mouth and have a conversation with your friends. How many times must you repeat yourself? How does this make you feel? Go to bed and stay in one position for as long as you possibly can, moving nothing. Strap weights to your ankles and climb a flight of stairs, taking two at a time. Thats the kind of strength it takes for someone with ALS to tackle the stairs on a good day. Install a text-to-speech app on your phone or iPad and use it exclusively to communicate for one day.
Posted on: Mon, 25 Aug 2014 02:24:59 +0000
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