Progess Report

    • Anonymous
      April 14, 2007 at 2:57 pm

      Recent activity

      It is now almost 3yrs 2 months since my onset of GBS – from just blinking and vent for 3 ½ months have now progressed to a walker at home loftstrands at therapy (Danbury Hosp CT) and just last week I was challenged to walk with no supports just the PT holding onto my hips.. With PT/OT and aqua therapy three times a week from early AM til noon and then the afternoon working from home.(two fingered typing) I am quite busy. All that has gone so well has been the results of having believing therapists and I guess my being a patient person. GBS can do that for you. Still have some lingering questions…. Still have difficulty with the sit/stand , and some days my hands/fingers feel as if the are made of rubber. Grasp is coming very slowly and the lower part of my legs and feet seem to be always cold … However I seem to be one of those blessed with no pain. Lower part of my arms have been very slow to build up muscle tone. Everyone Dr’s included are amazed at my progress and the fact that it continues .. Is my case following the normal course of GBS recovery? Would love to hear from the group regarding any of these questions.

      Will be making my first air adventure to New Orleans for The New Orleans Jazz Festival.
      Warm weather,spicy food , good music I’m sure will speed things up!

      Robert Jones

    • Anonymous
      April 14, 2007 at 5:29 pm

      Dear Robert

      Hi. It sounds like you are doing well, particularly as you are seeing improvement. I suspect that going from sitting to standing is harder than walking as you use your thigh muscles to stand up.

      I have often heard of GBS’ers experiencing the cold feet and legs. I get it at times myself still. I didn’t get the rubber hands so much, though occasionally they were like lumps of putty.

      It’s great that you are thorough with your phsio and OT and the aqua therapy.

      I must agree with you about GBS and patience.

      God bless

    • Anonymous
      April 14, 2007 at 5:53 pm

      Wow Robert ~ you’ve had a trying 3+ years. Congratulations on your successes! As you will read in the posts, there is not alot of “normal” in either GBS or CIDP 😮 We may have similarities but we are one unique group of people ~ ha! I always say never give up and don’t let someone else tell you how you will go from here. I am post 12 yrs. and still see little improvements each year. And little is better than nothing! Keeping a journal is a great way to “see” just how far you’ve come along.

      For years ~ literally ~ I took 3, 4, sometimes 5 baths/day as I was so cold. That, too, has improved with time. When I over-do then comes the tired and the frustration of exacerbating residuals:eek:

      Enjoy your trip and tell us all about the fun you have 🙂

    • Anonymous
      April 14, 2007 at 10:16 pm


      although each one of us gbsers recovers at different rates, i can tell from your progress that much more recovery is your w time. your time frame is fine. keep up the good work. gbs stands for Get Better Slowly. take care. be well.

      gene gbs 8-99
      in numbers there is strength