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Old 05-13-2003, 10:40 PM #1 (permalink)
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JOY JOY is offline
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Join Date: 2003
Posts: 28
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JOY JOY is offline
New Member
JOY's Avatar
Join Date: 2003
Posts: 28
JOY is an unknown quantity at this point
Default new member says hello

hi I just recently joined this website, my younger brother (39) was diagnosed with ALS this past year. He is deterating so fast, in one year he has no use of any of his limbs, he can move his head and neck only, he is confined to an electric wheelchair all day for his comfort, he is choking constantly on his food, I was his caregiver for the past five months, but he recently moved to his own apartment with a live in caregiver. We have lost touch he seems to want to die alone only with few people around him I am very confused and sad and feel very useless. From at one time careing for his needs night and day to now not seeing him at all is very confusing and I feel so sad. I have to respect his choices but sometimes feel angry at the way things are. I am going to see him this week and perhaps for the last time give him a hug and kiss him goodbye. I wish to work for the ALS society to somehow feel included in this very cruel disease. I will contact our local chapter to see how I may be of service. thanks and good luck to all the PALS out there and their families.
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