mtdew68
New member
- Joined
- Feb 1, 2011
- Messages
- 3
- Reason
- Loved one DX
- Country
- US
- State
- NY
- City
- Auburn
Hi, I desperately need your help! My sister was diagnosed is ALS in September. However she has been having trouble for almost 3 years now and is going downhill fast. Our doctor thought we both had MS and pushed to get us checked. She was told ALS and I've been told I have fibromyalgia. Her emotional state is horrible! She's so depressed and feeling totally useless going from being the wife who did all the housework and yard work and being very strong for a woman to not even being able to sew on a button. She's losing/lost her will to live with this disease. She has gotten very little if any help from the ALS and MDA thus far. She feels very alone in all of this as if she was handed this horrible diagnosis and feels left to fend for herself with no support in sight.
Some days her hubby is a huge help being kind and understanding and others he's no help at all only making her feel worse. He's in denial and don't completely understand what she has. He thinks she's just gotten weak from laziness. She has another doctor's appt next week and I told her it's time her doctor's explain to him that this isn't in her head and that it's not from just being lazy. Hopefully, he will understand a little bit better after. I know we all have our battles to fight and denial and acceptance is part of dealing with any disease, so it's normal.
She did join this forum but isn't sure how to post which I told her how to but I think she's just too afraid to. So I'm reaching out for help for her and will continue to until I find some.
Ok that all being said, I think it would be a huge help if she had someone with ALS as well that she could talk to preferrably female. We live in central NY.
I love my sister with all my heart and I can't stand by seeing her feel so alone in all this when I know there are people out that are going through the same thing and would help emotionally at least. Unreturned calls and no support are only making matters worse to her emotional state when she does reach out for help. Please help me help her or point me in the direction of where I can find help. Thank you in advance and hugs to all of you whether you're the patient or the caregiver or even a family member.
P.S. I am currently awaiting call backs myself from MDA and the nearest ALS support group.
Some days her hubby is a huge help being kind and understanding and others he's no help at all only making her feel worse. He's in denial and don't completely understand what she has. He thinks she's just gotten weak from laziness. She has another doctor's appt next week and I told her it's time her doctor's explain to him that this isn't in her head and that it's not from just being lazy. Hopefully, he will understand a little bit better after. I know we all have our battles to fight and denial and acceptance is part of dealing with any disease, so it's normal.
She did join this forum but isn't sure how to post which I told her how to but I think she's just too afraid to. So I'm reaching out for help for her and will continue to until I find some.
Ok that all being said, I think it would be a huge help if she had someone with ALS as well that she could talk to preferrably female. We live in central NY.
I love my sister with all my heart and I can't stand by seeing her feel so alone in all this when I know there are people out that are going through the same thing and would help emotionally at least. Unreturned calls and no support are only making matters worse to her emotional state when she does reach out for help. Please help me help her or point me in the direction of where I can find help. Thank you in advance and hugs to all of you whether you're the patient or the caregiver or even a family member.
P.S. I am currently awaiting call backs myself from MDA and the nearest ALS support group.