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  • My husband who is 56-years-old was diagnosed with ALS Jan 31, 2013. He already has lost lower function and is wheelchair bound. His upper strength is deteriorating as well. Speech is still good, but voice changing and breathing more difficult. We are getting up 4-5 times per night because he has urinary urgency (uses urinal) and bedside commode. He gets scared because he is short of breath. He cries a lot more and talks a lot about dying. He doesn't want to leave the house and seems depressed. We return to Mayo next week and I am hoping to get some breathing assist as well as hospital bed order. My children (3) are a great deal of help and support. I have to work because of insurance and cannot be with him during the day except at lunch. I guess my question is, he is progressing so fast and I know no one can tell me how much time he has, I am scared because of the progression rate. Any thoughts out there? Sorry for the lengthy post.
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