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Old 11-06-2009, 09:49 AM   #11 (permalink)
rowland's wife
New Member (Say Hi)
Registered Member
Join Date: 2008
City: Lamar
State: Arkansas
Country: US
Diagnosed: 09/2008
Posts: 31
rowland's wife is on a distinguished road
Default Re: "bulbar-onset rarely misdiagnosed"

my husband was diagnosed 13 months ago with bulbar als they say it is different for everyone ,he is also dependent on me for all his care, he doesn't want a feeding tube, I feed him we take it slow. his speech is hard to understand it is so frustrating sometimes, he has a machine that he can type on but his hands no longer allow him to do that. we have a 8 year old son, lately I can tell it is hard for him to see this happening to his dad, to see him go from being strong to being in a wheelchair unable to walk or feed himself in a years time, I hate this disease. I understand what you mean about not having time to yourself, we all need that to reenergize, but most of the time theres just not time for it.
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