Helping others with GBS

    • Anonymous
      July 10, 2007 at 3:34 pm

      I have just returned from the hospital visiting a young woman with GBS. My Neuroligist called and asked me to visit her as she wanted to see someone else that is recovered from GBS. We talked for several hours and I met her mother. She is a loveing caregiver as the rest of her family.
      I had asked my Neuroligist to use me with others if they need support and encourgment. I saw the difference it makes to someone in the hospital. This woman is 28 and has a young child and she came so close to getting GBS from her head down.
      This was again from Doctors not knowing what GBS was. This woman had numb hands and legs and feet. She also had signs of a droop to the left lip. Several Doctors mis diagnosed her and didn’t even listen to her mom when they were told she was numb in her legs and feet and hands. They sent her home. Several days later her mom took her to the hospital I was in and the Neuroligist on call was my doctor. She instanley saw GBS and did a spinal tap and admitted her. She has had 4 IVIGS and the droop in her lip has gone and she only has the numbness. She can use her hands and will be transferred to a rehab center tomorrow.
      I saw how postive it is for another with GBS to meet someone that is recovering from it. We all should if we can let our Neuroglist know we are avable to talk to patients with GBS and to visit. The feeling of giveing is wonderful and to see the change in someone seeing that they too will walk again is so humbling (Steve)

    • Anonymous
      July 10, 2007 at 9:14 pm

      Steve, you are wonderful for doing that. Have you ever considered contacting the foundation and becoming a liasion?? The phone number is on the main webpage. Helping others helps my recovery more then any medicine or rehab. If I can ever help with anything please email me jerimyschilz at hotmail dot com


    • Anonymous
      July 11, 2007 at 12:26 am

      Way to go Steve!!! Keep up the Good Work!:)

    • Anonymous
      July 11, 2007 at 12:19 pm

      Nate was visited by two people who had previously had GBS and were totally recovered.
      One had it in 1992 and the other in 2004.
      It helped Nate a lot to see that they were ok, doing normal things and not left with a lot of risiduals.
      The one that had it in 1992 does shark fishing tournaments, catches them himself, works out and is full of muscles. You never would be able to tell that he had ever been sick a day in his life.
      He still has numbness in his hands but does everything just fine.
      The other one has no risiduals that I know of. She used to post here but I haven;t seen her in a long time.
      She came to visit nate early in his hospital stay and the day before he was discharged from the hospital and she was doing just fine.

      Trudy, natesmom

    • Anonymous
      July 11, 2007 at 1:16 pm

      Thank all of you for your replys. I was asked a question once by a friend. She looked into my eyes and said Steve most people forget about what they had been through 4 months after they are better. They forget the other people that still suffers. I was silent for a moment then I looked her in the eyes and said. Till the day I take my last breath I WILL NEVER forget where I was and the people still suffering. Any time my Neuroligist calls and says will you visit a GBS pt or anyone she is treating I will be there.I promised God I will do this and I need to do it. If you can see the hope fill someones face seeing that I was in their place once and now walking. It really gives them hope. Thank all of you that have replyed (Steve

    • July 12, 2007 at 8:45 am

      I, too, have desired to help others with GBS. I visited several people at our rehab hospital in Lexington and told my neurologist I would visit others in this area. He has never called me about visiting anyone. It may be the new privacy laws in effect now.

    • Anonymous
      July 13, 2007 at 3:47 am

      i would love to be able to visit others and give them hope. I wish someone had come to visit me when i didnt know if there was light at the end of the tunnel. Unfortunately being in Australia I havent come across too many organisations that are as active as this one.

      There has to be something positive to come out of this experience right?