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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.
 
Oh i am so sorry, i would be willing to help her, i would be glad to talk with her. You can ask her and leave a message on my visior message area of the forum. Sound abot the same age, and was the housewife and keeper, my house is my castle, super fussy about it. I can give some advice and support.
 
Sorry your sister is having such a rough time. There are lots of loving people here who are available to support and communicate with her and you.

While you are waiting for them to respond to your post have a look at my website.

Living and Surving with ALS
 
mtdew,

So very sorry to hear of your sister's diagnosis, I can say she has a big plus with you loving, supporting and helping her. Yes, this is a terrible disease and we do go through emotional ups and downs especially in the early weeks after diagnosis. Coming to grips with our "new normal" challenges us mentally, physically and spiritually. My best suggestion is to talk with her and focus on the things she can do, rather than what she can't do.

Since I'm not in your area and not female either, I will pray for your sister and no that you will find great support here for her. I was also diagnosed last September and have had great support from my ALS Association so I'd try them again, maybe the message fell through the cracks somehow.

The ALS Association Upstate New York Chapter: The ALS Association Upstate New York Chapter

Looks like the chapter for your area.
 
Oh i am so sorry, i would be willing to help her, i would be glad to talk with her. You can ask her and leave a message on my visior message area of the forum. Sound abot the same age, and was the housewife and keeper, my house is my castle, super fussy about it. I can give some advice and support.


Thank you! Where is the visitor message area? I believe she has registered for the forum just came and read some but hasn't posted.
 
Just click the user name upper left corner of the post, then view public profile, it will bring you to visitor messages
 
Thank you for your help. I did contact the ALS chapter earlier today and they are one of the calls I'm waiting back on.

Her depression does have a lot of basis not only due to this disease, but our family had a devastating year last year and continued right into this year. Our Mom crossed over in July, followed by one of our younger sisters in November and then our step father just a few weeks ago. I know all of these piling up like that can put anyone in a deep depression, but I also know the toll it can take on your bodies ability to fight diseases with in it which is why I think she's had such a drastic change in her disabilities so quickly.

I've tried to reassure her that she doesn't have to be wonder woman anymore. Just do what you can when you can and leave the rest. When it comes right down to it, those things don't matter anyway...but she still just feels so useless and I know how that feels unfortunately. It just hurts to see her struggle and feel her sadness.
 
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