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  1. E

    This is crazy.

    Hey everyone. Quick update. The bipap is not going to be an option as she has been unable to exhale enough to expel CO2. She will be geting a trache and a feeding tube. This will now require 24 hr per day care. I think we will be getting home nursing but want her to decide whether to choose...
  2. E

    This is crazy.

    Thanks
  3. E

    This is crazy.

    Laurie, she had seen a few neurologists but they were sure. We then went to Johns Hopkins in Baltimore and they made the diagnosis. Thank you guys for the input. I have a lot of support from friends and family but as the main caregiver it very difficult and kind of a lonely and overwhelming road.
  4. E

    This is crazy.

    I should also add that she is only 41. Not sure how important that is but seems very young by comparison to others.
  5. E

    This is crazy.

    New to the forum. My wife was diagnosed in July 2015. She has no use in her legs, can no longer lift her arms and only has marginal use of her hands. Her breathing is now deteriorating and we are currently in the hospital trying to get her acclimated to a bipap machine. We can kind of trace...
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