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meagan Message
5 May 2009, 04:46 PM

i had twin brothers one died at age 9 after taking care of him for 3 years he passed 6-13-94, his twin now just turned 24 and been fighting for a year now and now to top it off he is in hospice can no longer walk, see, he's getting harder to understand, my Mother god bless her sat by Aaron 4, 3 years then my grandma got sick so she had to go to denver to take care of her dying mom, she also held her hand as she went, the thing i think makes me the maddest she gave up her job to take care of my grandma, and came home to take care my blind brother who by the way is 6'4 and he's not a real light weight if you know what i mean, how long will this last? what more does she need to go through, hes not fat just hard to handle, i hate seeing him in that bed everyday. i watch my mom slowly die inside cause she thinks this is all her fault. please help me understand is it just like (ALD) like Aaron or is (AMN) totally different.
sysharp Message
29 May 2009, 08:04 PM

It's not anyone's fault, not that knowing this makes caring for someone with AMN any easier. Unlike bad parents who may abuse their children, only fate can be blamed for the passing on of a gene defect. Both your Mom and you have to come to terms with the helplessness and guilt you must feel, accept it, and focus on any and all goodness that you're able to. It's my understanding that AMN is a more limited disease than ALD. Both my grandfather and my mother have it, and it seems to be mostly limited to their legs. My mother also has tremors in her arms and hands, but anti-spasm medications seem to take care of them, for the most part. Bless you, and keep well.