Amyotrophic Lateral Sclerosis (ALS) Support Group
Amyotrophic lateral sclerosis (ALS, sometimes called Lou Gehrig's disease, Maladie de Charcot or motor neurone disease) is a progressive, almost invariably fatal neurological disease. In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, ceasing to send messages to muscles. This community is for those afflicted with the disease or who know a...
HI! I am new to the group. I would like to talk to someone regarding the description of ALS. Unless this is for PLS (which I do not see mentioned). ALS is 100% terminal. There is unfortunately no "almost" in this case. Please have someone direct me to the appropriate person or if that person is seeing this I would be more than happy to discuss this further. It is very important that this information be accurate. Thank you!
My intentions were never to make anything harder for PALS. I am however very involved with educating people who don't know about ALS. When I see things that could be leading people to believe that there is something there is not at this time it is in my opinion doing more harm than good. I hate the fact that this disease is terminal. I hate that I have to post things like this. However, I have spent years educating so PALS and CALS can get the help they need and the disease gets the attention it can so a cure is found.
Again I'm deeply sorry. I'm trying to educate because I hate that our local hospital looks to me to know what to do for my PALS. I hate that friends and family ask, when is her surgery? Is she in remission yet?
My PALS wants me to keep educating. The ALS association in washing ton dc and I have spoken and I am helping the ALS community. I'm knowledgeable about the disease. I want to help and educating does.
Thank you for putting ALS in perspective. The symptoms could be mimicked and if you see ALS patients living longer it is because it may be other causes.
-Lele10