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Old 12-04-2004, 09:58 PM #7 (permalink)
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I am not as ALS patient, but I am a full time caregiver for my husband. He has several symptoms of ALS, but the Neurological specialists claim it is not full-fledged ALS. They call it an 'unidentified lower motor neuron disease'. However, he now has '0' use of his arms & hands, and likely will not be walking much longer. To make matters more difficult, he is now reaching the acceptance and depressive stage. (I almost wish he would just go back to being angry & in denial, but oh well!) His first symptoms occured almost 2 1/2 yrs ago with weakness in his arms.

Anyway, I must admit that I am extremely sensitive to being easily startled by the silliest things that never ever bothered me before. I was usually 'like a rock'. He does not startle.

Last year with the onset of symptoms and tons & tons of tests, I became rather unglued with the whole family & myself, but not intentionally. (Over 80 medical trips last year!) The family forced me to see the doctor and he put me on Effexor. Now I am stable once again and can handle most everything, but it does upset me to see my husband depressed. He was always a 'rock'. I try to cuddle and comfort him, but it doesn't always work. He feels useless and thinks he is a burden to everyone. He also will not go out anymore, partially due to fears of falling, but he also thinks he is 'on display', which is nonsence. His friends love to see him.

Our true friends drop by frequently, and others just aren't sure how to handle this. It has made everyone take a hard look at life, as they are all in the same age group. This is the first time that I am aware of a disease of this nature occuring in our small rural community.

Our 29 yr old son was in denial for a long long time and buried himself in the family business. Now he is coming around more, and a visit from his kids is the highlight of our day. Our 27 yr old daughter accepted it much better and dropped her engineering so she could come home and also help with the family businesses. Now she is living on our farm, making numerous improvements, and looking after our show horses. She and her dad were always exremely close, but now he seems to pick fights with her. It is hard to see them so distanced. Hopefully this is just a phase. She is also on meds to deal with this. The truth is that we are the ones on the drugs, and he only takes tylenol! I would trade places with him if I could. He was a classic workaholic, and sitting around is so hard on him.

(I worked in hospitals for over 20 yrs, so I am handling this reasonably well for the time being.)

Any advice ?
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