• February 25, 2017 at 1:28 pm

      I am new member, i was diagnosed with GBS i January 2015. it was very severe case and i spent 4 weeks in ICU,i received immunoglobulins (ivg) and allowed to return home and attending physiotherapy. since that time i have got some great improvements but there is something is really giving me headache because firstly i can walk without a walker though with poor balance not more than 80 meters but i don’t have the balance for staying in standing position even for one minute without touching somewhere for support. secondly my knee joint didn’t strength enough for me to walk normally so i am forced to extend them when i am working so that i cannot go down, does anybody had this experience? will walking balance improve at least with my 2 years old GBS? Please help me with your advise i know some of you may have experience something like this, this issue of knees is really killing me help please. sorry for my poor English

    • February 25, 2017 at 3:45 pm

      I was diagnosed in February 2016 and released from the subacute facility in January 2017. My gait was extremely unstable, like a baby learning how to walk for the first time. I was very wobbly and couldn’t walk long distances. I also had somewhat of a limp going on and my balance was off. I continue to received IVIG treatments every month and am still on Prednisone. Both have really helped along with staying active and constantly working out. Everything from my balance to my gait has gotten a lot better. I can almost run again. It just takes time to recover, so have patience and stay positive and motivated. I’m still unable to sit on the floor unless I have something behind me to help me lower myself. Squatting is unbearable as my quads are extremely tight, but I stretch regularly to try to regain flexibility. My knees and ankles are still weak so I have trouble with stairs and sidewalks, but it’s getting better. The length of recovery is different for everyone. Listen to your body and live as healthy as you can. Rooting for you!


      • February 25, 2017 at 5:43 pm

        thank you mr jaimers68 for your advise

    • GH
      February 25, 2017 at 3:45 pm

      Recovery can take three years or more and slows down with time. Recovery may never be 100%. I am six years out of hospital and still have strength and balance deficiencies from the knees down. I consider it permanent.

      After the walker did you start using a cane? I used a cane for about a year and a half before I gave it up. If you can walk, you should be able to stand with a cane by leaning against it.

      • February 25, 2017 at 5:36 pm

        .ooh thank you GH for your reply, yes i have started using a cane, how long it take you before you give up your cane?

    • GH
      February 25, 2017 at 6:55 pm

      As I wrote, I used a cane for about 18 months. But everyone’s recovery is individual. Some who use a cane may always need it. I put mine aside when I was no longer depending on it but just carrying it around.

      A cane is important when one is at risk of falling, not only to prevent a fall but to get up after one. When I first started walking I needed something to support myself as I got to my feet. Before I went outside with my cane I made sure that I could get to my feet using only my cane. I had done the same earlier with my walker.

      • February 26, 2017 at 8:09 am

        thank you GH, I got you

    • March 1, 2017 at 11:59 pm

      It is interesting how we each progress in our individual ways! I can get down on to the floor fairly easily, but I need to have a wall or something to push myself back up with. I’m not sure if it is my knees, back, or overall balance. I still dislike having to stand in place for very long (if I am able to). When I first started walking (again) the pain was horrible. I made a lot of 5-foot, then 10-foot, then longer walking goals. I was given knee-high orthotics to keep me from clenching my feet like fists and from staying curled-up and for stability. They said I’d need them “for life”. Heck, no, I said to myself and put them in a donation bin 6 months later. I bought 2 ankle braces and used those instead for several months and in slippery weather for another few months. Standing at the kitchen sink is still difficult. I use a seat in the shower. I try not to look at things in the sky for very long when I’m outside.
      I also kept a hand on or close to a wall or sturdy piece of furniture for a long time.
      Who knows how far you will progress…keep trying. If something seems too difficult after several attempts, put it on hold for a week, a month, whatever it takes to grow the motivation, balance, and muscles.

    • March 2, 2017 at 12:39 am

      Electra is a realist with humor and excellent expectations!