Support groups for family?

    • Anonymous
      October 20, 2006 at 6:36 am

      My sister, Natacha, contracted GBS at the age of 25 back in 1993. To this day we have no idea what caused it, but I was 21 at the time and had just joined the Navy the previous year. I didn’t find out until she was in the hospital that she had it. My mother was with her at her bedside and since I had never heard of this particular condition, plus being pre-occupied with the new world of military life, didn’t think much of it. We had always been a family that got over sickness rather quickly.
      I received a message on my ship one day not long after that from my father, asking me to call him back ASAP. I called him back that day only for him to tell me that my sister had passed away. I couldn’t or maybe refused to accept it at first so I went on with my ship work acting as if nothing had happened not really knowing what to do or how to respond. I eventually told someone and the Navy ended up giving me emergency leave to attend the funeral.
      Apparently she had been in the hospital for some time unable to move, talk or function normally and at some point, she started having trouble breathing so they attempted to conduct a treacheotomy. Due to the excessive medication they had given her, her heart stopped when they started it. Ultimately, they were unable to revive this 25 year old girl who worked out almost every day and was in better shape than I have ever been in my now 35 years. She was also 2 1/2 months pregnant with her first child.
      Needless to say, her husband won a 2 million dollar suit against the Broward county hospital . He is now re-married with children. I am happy for him, however I am still having trouble with it. I didn’t receive anything from the suit and to this day, don’t want anything from it. I just want my sister back.
      Ever since I have given money to the GBS foundation through the military’s “Combined Federal Campaign” program but I feel I need to do more and just don’t know what else to do. It has been almost 14 years now and I still have trouble dealing with it from time to time.
      If anyone knows of a support group close to the Jacksonville, FL area, please let me know. Or if you have a website that lists local groups, I would appreciate that too. Thanks.


    • Anonymous
      October 20, 2006 at 10:22 am

      hi jason & welcome,

      richard watson

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

    • Anonymous
      October 11, 2007 at 4:22 am

      Quit lying, You feel you deserve some of the money from your sisters lawsuit. It’s OK to to feel that way. Because your right, you do deservere it, but sometimes it doesn’t happen that way. Trust me I know where you’re coming from. You and your sister were probably really close. By the way I graduated from Stranahan High in 1990. I lost my brother 3 years ago. He was my best friend. I’m sorry for your loss. I know how much it hurts. It still hurts me today.

    • Anonymous
      October 11, 2007 at 5:40 pm


      I think its hard to learn of a death like you did, so suddenly and not even being aware that she was ill. The fact that there was no reason for her to pass away, except for what is possible neglegance, is in and of itself maybe one of the hardest things to come to terms with.
      You know, the strange thing is, I think that as many of us become older, things weigh on us more, we become more aware in a way of how precious life is and want to be given a chance to help in some way. I think this is a wonderful way to honor your sister, and it possibly helps in a way for you to come to terms with her sudden death a little better, even if it is over a decade later. I had GBS in ’85/’86 and was on a respirator for 6 weeks, it was such a shock and trauma for me, that for 18 years I refused to speak about it, only now dealing with post GBS, am I ‘coming to terms with’ what happened 21 years ago.

      Gene has given you the number of a liaison to contact, maybe if it is an active group, you could help out in many ways, including helping out with the “miracle mile’ in May if they have one, or giving a talk at a meeting etc. If you dont mind me asking, what was the ruling of the court? I was just wondering if there was something you could get involved with regards to care giver advocacy or medical neglegance, if that is something you want to do. I know that every penny given to the Foundation is put to good use, Thank you so much for your support over the years!

    • Anonymous
      October 11, 2007 at 5:41 pm

      Oh my goodness Jason!

      Im sorry, I didnt see that you posted this last year. I dont often go onto the Family, Friends and Caregivers thread, so I must have missed this one totally back then. Did you find anything?

    • Anonymous
      October 12, 2007 at 2:27 am

      Jason you are doing a great job in keeping Natacha’s legacy alive by leaving a post here for all to read. That is going to help others heal in my ways from their losses. Whether it is a life or the quality of life that GBS has taken away from us your memory of your Sister and what your family has gone thru could help many others. Please contact your local chapter to see if there is something you can help them with. Also even contacting a local Grievence Council might be a place where you can also talk to people that have just experieced a heavy loss like your family did! I am glad you posted and woke me up again to remind me that we all can give back and help those who could use our strenght and knowledge while they are trying to deal with this sudden change to their lives. Also, [B]thank you[/B] for making a difference in our freedom so that we can freely move around to help others!