Mother has GBS

    • Anonymous
      May 16, 2006 at 10:12 am

      My 78 year old mother was diagnosed with GBS Feb 15. She is now in a SubAcute Rehab. She is no longer on the vent and is being weaned off the Trach collar. She was paralyziz all the way up to her face. Doing so much better everyday and she is now asking questions and I would like someone to maybe visit her. If the foundation or anyone else knows of someone in my area I could contact it would be very helpful. I have educated myself and can explain things to her but if she were to see and talk to someone that as gone thru what she is now having to endure I know it would help her alot.
      I was wondering if anyone had any experience with GBS paralysisng the vocal cords? She is not able to speak very well and they are telling me the GBS caused this. We are still in the early stages of getting better, its a long road but my Mother is a fighter and strong willed. Any feed back would be appreciated.

    • Anonymous
      May 16, 2006 at 10:41 am

      Information on the UK GBS Support Group site can be found at either of these links.
      [URL=””][/URL] or [URL=””][/URL]
      They may not answer all your specific questions but the info is very useful.

    • Anonymous
      May 16, 2006 at 1:28 pm

      Hi Donna and welcome, very sorry to hear about your mother but glad to hear she is on the road to recovery. I didn’t have paralyzed vocal cords so I can’t help you there. We are all here to help you however we can though and I know others had that issue as well. Tell your mother hello for me and that I am praying for her.


    • Anonymous
      May 16, 2006 at 2:43 pm

      Dear Donna,

      Even though when I got GBS my vocal chords were not paralyzed I was on a vent for 9 days. After they removed my vent I developed tracheal stenosis from scar tissue from the vent. How long was your mother vented for? This could be the problem for her not being able to talk well. Have the doctors check it out. They should be able to do a CAT scan to see if this is the problem or something else. Wishing only good thoughts for your mother.


    • Anonymous
      May 16, 2006 at 3:10 pm

      hi donna & welcome,

      contact david 973-618-1178 roseland nj

      also contact for good info they will send you. wynnewood pa [url][/url]

      take care. be well.
      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 16, 2006 at 9:07 pm


      My thoughts and prayers are with you and your mother. I was not able to talk for 6 months. I remember when I was able to talk, my first words were ” I am scared”. Constant encouragement and comfort to your mother helps.
      Also, hang in there….

    • Anonymous
      May 17, 2006 at 12:31 am


      My father was vented for nine days and was unable to talk or swallow for 21 days after its removal. I was told it was from trauma from the vent and feeding tube. His vocal cords not completely paralized as he could say words but they were not always clear. It was my understanding that it was the nerves that work his troat and tongue were not functioning properly. my dad is 75. They said he had a mild case as it only effected his eyes and mouth with limited paralisis in his arms and legs. We were fortunate enough to be able to bring him right home for recovery. That was in December. He was unable to swallow solid foods until well into Janaury. His voice changes and sometimes still has problems with word formation when he is tired or upset but all in all he is up and around. I think the hardest part is their feelings that they won’t get better and the enormous amount of encouragement to make them aware of small achievements. My father would get fustrated and we would have to keep letting him see that what he could do this week he couldn’t do last week. Hang in there and keep with the encouragement. My prayers are with both of you and keep posting. There are so many wonderful and knowledgable people here to help both of you through this.