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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


Hi Jo-

I am glad to hear your reply.. yes quality of life is what is important.. In my opinion..

It sounds like your docs are doing the right thing and keeping tabs on your weight.

My husband also experienced lots of leg cramps and stiffness. I would do massaging and it seemed to help some.. at least alleviate the stiffness. I am not sure how your husband and kids are doing.. the unfortunate thing for us was that everyone was really stressed and often tried to hide their stress from everyone else.. it was like no one wanted to be the "weakest link". The big difference being that my children were 4 and 11 when their Dad was diagnosed.. I felt like I had to carry the world on my shoulders.. and I would cry every morning in the shower.. so that no one would see me.. so I would not upset anyone...

The old verse from Paul.. when I am weak then I am strong.. is so true. Although it seems contradictory at first. It was when I tried to do everything for myself and my husband that I struggled.. it was when I admitted that I could do just about nothing... that I felt at peace. Maybe it was some form of acceptance.. not of the end result.. but of what the journey was. I could not change what had happened or the illness. Only the way I thought about it.

That was the other thing.. what you said.. about people around you that love and need you. I never knew the true depth and measure of love in general or spousal love specifically until it was so soundly tested. I never ever thought I could stand by and be so helpless when the only person I had been with since I was 16 was cruelly suffering. It is simply that Love outweighs all else.. and is everlasting. It brings the graces of strength and hope and courage. I am continuing my prayers for you.
Truly yours-

Jennifer





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