It’s about so much more…
Imagine your whole life ahead of you, all your goals & dreams, and thoughts of growing old with your family. Then suddenly something isn’t right…first your fingers or toes, your hand or foot, or your arm or leg start feeling different. They just aren’t working like they should. Or maybe your mouth just doesn’t feel quite right. Month after month of test after test keep coming back negative until they tell you it’s ALS. You soon learn that you will not only lose your ability to walk, but to itch your own itches, to readjust yourself when you are uncomfortable or to simply swat a fly out of your face. You will become paralyzed yet you will still feel the itches and uncomfortableness… it’s been described as torture. You will also slowly lose your ability to feed yourself, then to eat real food for fear of choking. You will lose your ability to speak and communicate your needs or even tell your family that you love them in your own voice. Eventually you won’t be able to swallow your own saliva that builds up in your mouth, which will cause you to drool on yourself. You will no longer be the “you” that you once knew, yet your mind will be unaffected. You will be 100% dependent on other people for daily life and survival. Basically anyone’s worst nightmare. Remember this can happen to you or someone you love.
I post this with extreme reservation because it is harsh and there are real people (some of the most beautiful people I have ever met) suffering right now and others who could be newly diagnosed and just learning what they will face. But everyone else needs to know how bad it is so that we can finally find a cure. Please don’t ever forget exactly why we are all dumping ice water over our heads in the #IceBucketChallenge. In my opinion ALS is one of the most horrific and cruelest diseases on the face of the planet and needs to be wiped off of this earth. Those of us in the ALS community are beyond happy to see a cause that we fight so hard for finally get some real attention. Thank you to every single person who has been a part of spreading the word and taking the challenge. God bless every one of our pALS (people with ALS) as well as those who have been robbed of someone they loved. My fight started in 1999 after watching my mother-in-law Carolyn DePerno suffer from this monster. ALS of Utica was formed in her memory.