I feel compelled to write about the ALS ice bucket challenge today after seeing individuals post about it being stupid, dumb and any other number of words used to describe it and then after hearing and reading that others are boycotting it due to their religious beliefs due to how some of the research is performed. So before I get started I will apologize for the length. First let me say that the ice bucket challenge is about raising awareness, while fundraising and donations has become a fabulous outcome!!! I am confidant in that the number of people that I have met over the past two years that even new what ALS was or meant was less than 20%. Many times when people saw my bracelet Kiss Sues ALS, they would ask what it was. I would explain that it was in memory of my sister who passed away from ALS. The next question would be what is that. Lou Gehrigs disease I would respond. The normal response would be oh. I would ask if the new what this was. Most often they would say I have heard about it, but they did not really know what anything about the disease. So in the Hope of educating others, I would explain. ALS is a neurological disorder that is terminal. There is no cure for the disease and the average life expectancy is 3-5 years if you are lucky. The disease can start in various way, affecting your speech, lower extremities or upper extremities, but the end result will be the same, you will eventually become a prisoner in your own body. Totally aware of your surroundings but unable to move and eventually unable to communicate. Your muscles spasm and atrophy, you struggle to breathe, encounter problems eating and lose your ability to communicate with your family. It is a terrible disease and one that is ruthless on those it impacts. When you are faced with caring for a loved one with this illness you cannot even begin to imagine the challenges the individual with ALS faces, but what the caregivers face. It will test your faith - you will pray for a cure - you would if you could give your life to take away the pain of your loved one - you would do anything --- including dumping an ice bucket over your head with the Hope of getting people talking, understanding and interested in helping to find a cure to a disease in which every 90 minutes someone is diagnosed and every 90 minutes someone dies from this horrendous disease. While I am all for everyone having their own beliefs, I am not ok with individuals who know nothing about the disease calling this movement stupid. Please educate yourself before doing so. For those of you that disagree with the limited testing that is done - as in stem cell research or embryo testing, I can respect you not choosing to donate, however, please know that there is also so much more that these funds do for those diagnosed - they provide for social services, allow for nurses to come in and help families with challenges they are facing, they help with equipment needed to care for family members, they provide love and support!!! They are amazing!!! ALS.ORG AND LESTUNERALS.ORG your teams have changed my life forever!!! So you can choose to participate or choose not to participate, you can choose to donate to this cause or you can choose to donate to another organization or cause - but show some respect to those that are afflicted by or affected by this disease, especially having lost a loved one. The fact that the number of people that knew about this disease and its affect was slim to none, and today as a result of this challenge that is changing. I for one am amazed at the number of people talking about and donating to help others and with any luck save someone in the future! While I lost my sister I would do anything to save someone else from having to lose their loved one. Sorry for the length just frustrated with some of the comments I have seen and heard over the past 24 hours!!!
Posted on: Fri, 22 Aug 2014 02:57:10 +0000
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