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  • Hello:) Just wanted you to know how encouraged I am that you are here! I have been so lost at times with this nasty beast! Is your husband on a NIV? My husband was referred to hospice in March and I don't think a day has gone by this past year without my crying. I think they were too quick for that and have refused at this point. Lots of ignorance in the Medical community. Does your husband still have some use of legs/hands? My husband uses the NIV most of the day but will not use it overnight. He says he is drowning and feels very claustrophobic. He still writes a little but hands are very weak. He's on a walker but stumbling gait all the time, scary....You gave me hope!! thank you!!
    So sorry if my post offended. I truly didn't set out to do so but totally accept my words were not as careful as should have been as I understand what it must take for members to read and respond to the threads in that section. So sorry and best wishes.
    oops sooner, you posted in the PALS roll call, rather than the CALS one :)
    So glad you are here and I'm getting to know you :)
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