
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...

deleted_user
I am a student, am I am learing about A.L.S. I would love it if someone could talk to me and tell me about their experience. I understand that it is hard. I want to learn more and hear more about this disease so I can better help the people I will be caring for. Please help me. Thank you.

deleted_user
My grandma had ALS for two years. In most cases they have about 3-5 years so hers went by relatively fast. I had a lot of the nurses tell me that it usually starts down in the leg muscles and works it way up but it's also possible that it can start in the throat, like it did with my grandma. In her last six months she came to live with us and when I came home from school, the day nurses left and I took care of her when my mom was at work. As it progresses tasks will get harder for them to do on their own. My grandma had a feeding tube put in and when her hands locked up we took over and fed her every 2-6 hours. Taking her to the bathroom was also one of the things we did for her. Since it affects the throat muscles it's very common for them to drool so we folded paper towels up for her and let her use those so she didn't get her clothes dirty, bibs are nice but the drool is still running down the chin which she hated. Most websites will tell you that it doesn't affect the mind what-so-ever but my mom had a nurse at one point tell her that it does. So its hard to tell since they lose the ability to speak. Also, as the muscle loses function in the legs and even the arms it's very possible for spasms to occur. Hope this helps.

freelee
Of course getting info here would be great but if you want more here is a list of blogs by people with ALS and other Motor Neuron Diseases http://www.motor-neuron.com/mnd-blogs.php
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