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I know some people are complaining about all these ice water challenge clips but I have been seeing things on Facebook that just tears your heart out. I saw one yesterday where the guy (probably late 20s or early 30s) was saying how terrified he is of getting ALS because his grandmother died from it and his mother has it. Then, after breaking down, he says that he has been diagnosed with it and shows how he has to feed his mom. He said imagine strapping 20 lb. weights to your arms and trying to feed yourself or filling your mouth with marshmallows and trying to talk. I just about cried right out loud.
I don’t think most people have any idea what a horrible, insidious disease it is. It slowly totally destroys your body while leaving your mind perfectly alert and in tact. You need 24/7 care until (after years) your breathing finally shuts down and you literally suffocate. Like this guy explained, there is no profit in research so there is no funding. Hopefully, these challenges will bring some awareness to the disease. Although it’s incurable and ultimately kills it’s victims, maybe there can be some discovery of making their lives a little more tolerable in the meantime. I hope these challenges continue until they raise millions and millions and I don’t mind watching them one bit. I just wish they’d stress a little more that a donation goes along with the ice bath.
that would terrify me. It’s a slow awful death sentence, robbing victims little by little. Another similar one is Huntington’s, also with genetic ties. I too cry for these people and pray for a cure and for strength and support for the noble caregivers.
which is why pledges, donations and fundraisers are necessary. Look what our pledges and donations have done for Muscular Distrophy. The Jerry Lewis MD telethon raised millions each an every year, and although a permanent cure has not been found, the progression of the disease has slowed allowing people who have MD to live much longer and much more productive lives than ever before. So, yes, I agree that the ALS Icebucket Challenge has been a wonderful way to help with the search for a cure for ALS. The question, as always, is whether or not the money pledged is actually given, or is it just turning into a fanatical show stopper for people who want to do it for the wrong reasons? I would hate to think of that happening with any attempt to raise funds for researching any incurable disease.
Huntington’s with my physical therapist yesterday. I was unaware of how bad that one is too. She said it has the highest scuicide rate of any other disease. I makes the small inconvienence I went through with my hip replacement/fracture so very insignificant. When we face adversity, we should always remind ourselves how much worse things could be.
it may have been on Dr Phil this poor woman was married to a guy with Huntingtons (BTW Woody Guthrie died from it) and her two sons also inherited it. She was carng for them all with no help – can you believe it? And she ended up killing one of the sons. Who on earth could blame her? I cannot begin to fathom the stress and agony of that situation.
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