Assistance for a GBS Patient

    • skybluedays
      March 7, 2017 at 1:20 am

      Hi all,
      My Mom has been in the ICU with GBS for about three and a half months, and it doesn’t look like she’ll be out of there anytime soon. She still has very little movement and a lot of pain.
      Does anyone have any suggestions for anything we can do to help? She watches TV, and sometimes listens to music, but otherwise we haven’t been able to figure out much that we can do. I visit her every day for as long as I can/as long as she wants me there, but I’m not really sure what else to do.
      Thanks!
      Emily

    • Trevor
      March 7, 2017 at 1:52 am

      Hi – if she’s able to watch tv and listen to music that’s really good. I could do only this for months but eventually I recovered – it took a year so there is a lot of hope.
      They said there was nothing they could do but just to wait to get better . I did eventually have some steroids prednisilone whereby I made immediate improvements . They are unsure of whether this drug was responsible or that it was just coincidence since GBS should not normally respond in this way. So mention this to the docs ….good luck

      • skybluedays
        March 8, 2017 at 10:53 pm

        Trevor, thank you for the advice – I will mention it!
        GH, she cannot talk, and I think that’s one of the biggest hurdles. There’s a lot of frustration when she can’t communicate. That is a great idea to keep in mind though, when she can speak, so thanks!
        It has been a very long time, and she’ll probably be in there quite a while yet. I just wish there was more I could do!

    • GH
      March 7, 2017 at 1:32 pm

      Can she talk? When I was immobilized, I could still do crossword puzzles with my wife reading the clues and writing the answers. When I was in the ICU, however, I wasn’t up to mental challenges. I just wanted peace and quiet.

      Three months is an awfully long time to be in the ICU. I was in it about two and a half weeks, in two trips through, and I was glad to get out of there.

    • GH
      March 9, 2017 at 9:04 am

      Since she can’t talk, you need a system to communicate. If she is alert and can signal a yes or no response, then you can use a set of cards to select letters to spell words. I don’t have any direct experience with this method, though, as I could always talk.