ALS/ Lou Gehrig's Disease
Caring for someone with ALS has its own challenges and blessings. Come get help with ALS-related matters and be part of a community that cares about you.
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Michelle N said...
3 days ago
I have a friend that is 15 months into her ALS diagnosis. She is bedridden and cannot speak already. she was the sole provider of her family as her husband is severe bi polar and wont medicate himself, her main caretaker daughter is also bipolar but does have it under control. no insurance, living on disability and cannot get a break. she cannot afford the supplies they say will help her and the go fund me that has been set up pays the house payments. that is it in a nutshell, i am looking for a place to vent, but look for ways to help her and her family as they let me. can this be done here?
4 days ago
My sister has ataxia of the cerebellum, which is a combination of MS, Parkinson, and ALS, mostly ALS . She was diagnosed about 8 years ago. Today she is unable to do anything. This is the most cruelest disease I have ever heard of. My sister is just trapped in her body. She was always such a active and fun loving Mother and Grandmother now she cant even talk to or hold them. It so painful to witness.
23 days ago
My husband was diagnosed two years ago with ALS. We are noticing significant behavioral changes and wondering if others are experiencing it. Although the research is there on paper, it's not talked about at the clinic. It took me a while to attribute chances to the disease and not just to a mood.
28 days ago
A friend told me that her husband has ALS and is terminal. I need help in how to support her at this time. I don't want to say the wrong thing and would like help in what to say and not to say to my friend and be as supportive as I can during this difficult time. I want to be up-beat and positive however I lost my husband 5 years ago and having some difficulty living alone and just came back from out-of-state to help arrange for my 91 year old mother to be placed in a nursing home after being independent and living on her own until about 6 weeks ago. Any suggestions would be greatly appreciated, and thank you for being here to help others in similar situations.
about 1 month ago
My wife was just looked at by a neurologist (Friday 3/25/2016) and has scheduled her for further testing for ALS which they want to see her this week. She is having a hard time walking let alone standing and has gotten progressively worse since her two surgeries, one in September on her neck and one in December where they removed a cist from her right nerve on her L5. Needless to say this was like a bomb went off when we heard the news. I'm not sure what is ahead for us and the only thing I know about ALS is from the movie "Pride of the Yankees". I have been reading online about this disease and many of the symptoms does fit with what she is going through. We are both scared and she is already talking about not wanting to be resuscitated if she does have the disease. If anyone can help me get my senses it would be appreciated so I can be a rock for my family. God bless you all.
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