Visit with my mom

    • Anonymous
      August 26, 2007 at 2:32 pm

      I just spent a week with my mom in her rehab facility. I can’t even begin to tell you all how beautiful she looks! She’s always been beautiful and for some reason, I thought 3 months in a hospital would take its toll on her, but it didn’t at all. It was so nice to spend time with her and talk to her. I even went to PT with her one day. I talked to her PT therapist- asked if he had experience with GBS- one of his good friends is recovering now (I know it’s selfish, but that really made me feel better about how he would treat my mom). Her hands are still pretty badly affected, but on Saturday, she ate by herself with some special utensil they have for her! Her legs are pretty bad- she can move them some, but still has a long way to go. I can’t believe how good she’s doing- it really seemed to happen overnight!
      One thing that I haven’t seen discussed in the forums is the “crazy talk” (?) during recovery. The doctors and nurses said it’s normal and will pass, but I haven’t seen it mentioned here. She is lucid for some of the time, but most of the time, she’s just talking nonsense. It’s almost like dementia. It’s somewhat funny, especially when she’s completely aware that she’s not making any sense, but it does scare us a little. We just want our mom back. Does anyone know anything about this?
      Thank you all for your support and prayers. I won’t be able to see her again until Christmas. God, I really hope she’s walking then. I know that’s asking a lot, but I believe in miracles and I know the strength and courage she has.

    • Anonymous
      August 26, 2007 at 8:24 pm

      Crazy talk, eh? We’ll see how many respond to this one ๐Ÿ˜€ When you get hit with this “stuff” your whole world changes and you’re trying to find your way around. How I hated it when I thought one word and another word would come out of my mouth ๐Ÿ˜ฎ And sometimes, trying to get my thoughts to “line up” properly was such a struggle. Yup ~ when I had the awareness of what was happening, I’d just laugh or cry at myself!

      There may be lots of “crazy stuff” that your mom will experience but with time things will improve lots. It will be a new “normal” for mom ๐Ÿ™‚ I wish her well.

    • Anonymous
      August 26, 2007 at 10:20 pm

      Jenn, Soo glad to hear the good news about your Mom. The rented tongue talk is common, I do it with my relapses also. It does get better as recovery goes along. I still have brain farts, especially when my mind goes faster then my tongue. I know what I want my mouth to say, but what comes out isn’t always what I wanted to say.:rolleyes: Its worse when type is the same way!:eek: ๐Ÿ˜€ Your Mom sounds like she is right on track for recovery. Take care.

    • Anonymous
      August 26, 2007 at 10:24 pm

      JennIvy….it could be that the medication they have her on if there is any pain might be doing that too! I was like that when they gave me morphine. It gave me night and day terrors and I told my family to call 911. I wanted to leave the hospital and go to the other hospital up the street. If it continues you might want to bring it to their attention that is not normal for her to be doing that.

      I am glad you got to see your Mom! I am sure your visit made her very happy too. She could show off all she can do. I am sure Christmas is going to be a great time for all of your family! Just think how much change there is going to be in all of us!

    • Anonymous
      August 27, 2007 at 10:51 am


      I’m so glad you were able to spend the week with her! I know its hard that you will only see her again at Christmas, but just imagine they difference you may see at Christmas time – full report expected ๐Ÿ˜‰ . I’m sure that the information you got on the forum better helped prepare you for seeing her, it must be awful when people go to see family and dont even know what they are up against.

    • August 27, 2007 at 12:36 pm

      Hi Jenn,
      Glad your mom is doing so well now. It is so weird how all of a sudden it just starts to happen. Thats how it was with Kevin.

      My dad was recently in the hospital for 10 days and we thought he all of a sudden got dementia as well. They told us that it is commom for older patients to get this thing called sun downers. They kind of act like they are in dementia, but that it clears up either when they get home or they start to get less confused about where they are. My dad was no where near as serious as your mom and it took him 8 days, he was still a little confused even on the tenth day. Your mom has REALLY been through a confusing ordeal! Besides the normal sun downers type of confusion, many on this site have talked about being confused while in the hospital from their gbs. Good luck and I am so happy for you!!!

      Love, Dawn Kevies mom ๐Ÿ˜ฎ

    • Anonymous
      August 27, 2007 at 4:52 pm

      It’s lack of sleep that makes you a little nutty. When you only sleep in 15 minute to two hour segments in the hospital your brain gets fried and you can’t think straight. I told my neurologist if he wanted me to get better he needed to stop doing the IVIg at night where they wake me up every 30minutes for vitals. He finally did and I finally started getting better. My current neuro says it is common and they call it ICU psychosis. :p

    • Anonymous
      August 27, 2007 at 10:19 pm

      i am so glad to hear your mom is improving and that you got to spend some quality time wither her. You know what is the best though … hearing you sound so positive about all the little things she is achieving. I can understand how easy it would be for family and friends to get bogged down with all the negatives but you really do seem to get strength from the positives however small, and that is really the only way you can face this illness.

      As for the crazy talk, i agree with the idea of icu psychosis. I had the most bizarre hallucinations that were so real to me (and to make things worse they had bits of reality woven into them like the names of nurses, doctors etc) which just made them even more real to me. I’m glad that i was on a vent at the time and couldnt talk as i’m sure i would have been sent to the psych ward if i actually said what i was thinking. I h ave read it is due to a combination of factors – the meds you may be on plus the stress of being in icu, lack of sleep, constant monitors going off etc. I dont know if it would continue in a rehab hospital … but rest assured many of us have been through some strange things as a result of GBS and you can just put it down to another thing we dont know how long it will take to improve!