Some Bad News

    • Anonymous
      July 12, 2007 at 3:42 pm

      Hi All: Well, I saw my physiatrist for the first time today and the good news is he is a great guy and doctor, who actually took 45 minutes to listen and had some good answers. The bad news is he thinks I need to be in a wheel chair most of the time now. The other doctors I saw urged me to walk and get exercise that way, but he let me know I was compounding my pain and exhaustion by not being in a wheel chair. He told me at very best I have 50% of the strength I used to have before GBS and because my healing stopped early I might have less. It was a huge shock for me but feels right, though very disappointing. I hope it will help me bring my pain under control, but at least it won’t make it worse. He recommended swimming or water exercises 3 x a week to make up for not walking and has ordered other tests for my hip and knee problems. It was a relief to find someone who understood what I was going through and had some answers. I can’t say I liked the answers but it is still a relief. I never thought I would have to use a wheel chair again, except for long treks, but such is life. My wife, who is a wonderful caregiver, is in shock too, as I think we both hoped I was doing better than I really was. Thanks for all who encouraged me to see the physiatrist as it was a great move. Send me some good thoughts as I make this adjustment. Jeff

    • Anonymous
      July 12, 2007 at 4:46 pm


      from what you say this guy sounds good. by following what he suggests someday, as you heal, the wchair could be discarded, perhaps forever. rest & relax your body. i know having to go back to the wchair is sounds like back tracking, but in the long run is prolly the road to recovery. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      July 12, 2007 at 4:50 pm

      Jeff, I know how you feel. My neurologist told me the same thing. I felt like crying. You are taking it like a man. It”s hard to accept. My best wishes to you and your wife.


    • Anonymous
      July 12, 2007 at 8:19 pm

      Jeff, The water exercise can help you keep what you have with doing more damage. There is always hope. I was told a long time ago to never say never.

      You and your family are in my prayers. Hang in there.

    • Anonymous
      July 12, 2007 at 9:05 pm

      Jef, I just finished my aqua therapy, 40 visits, it was great! I get in my pool now and just slap on the mask and snorkel and float on my stomach, i let the arms and legs relax and it feels just wonderful. and of course i do some exercises in between, but the floating is what i really enjoy. My physiatrist told me i was too weak to do land pt/exercises and water was the best way to get the strength going up instead of down all the time-i agree, it was the best advice i have taken as far as exercising goes. You’ll be out of that wc in no time, don’t get too depressed about it. Put your energy into your aqua therapy and you’ll be surprised what you will be able to do in just a few short months. I’m pulling for ya!:)

    • Anonymous
      July 12, 2007 at 9:19 pm

      What happens to one of us, happens to all of us. I am disappointed for you and trying to look on this new doctor’s opinion as positive. You can walk and get into your wheelchair..that is something good. People wondered over the phone why I didn’t use a wheelchair when I was sick. How do you get into a wheelchair if you are crawling on the floor. And how do you get out of it – fall out?? I think pain tells us that we are doing something wrong. I did not push walking and took a chance that when I was ready, my body wouldn’t fail me. I feared atrophy of the leg muscles. But my intuition said I would be okay and I was. I think this is why I skipped the pain of GBS. Plus I truly believe my supplements helped tremendously and still are. If you want to talk about this, let me know. What can it hurt? Maybe there is a simple answer. What would Mindell say? Or Jung? Is it a dream within a dream? An illusion? Pardon my esoteric ramblings………but I am sure you know what I am saying.

    • Anonymous
      July 13, 2007 at 10:22 am

      My 12-yr-old has been in a wheelchair (mostly) since GBS in Feb 07. (Can walk w/ a walker or with someone to hang on to; but not too far).

      When we started Aquatic Therapy in April she could barely do anything in the water, and it was exhausting. However, after about 6 sessions, we began to see real improvement. Now we’ve continued therapy on our own. Last month she was able to start swimming. It was a huge morale booster! Now we go 4-5 times a week, adding a couple laps every time we go. She’s up to 28 laps (almost 1/2 mile)…it has helped her overall strength and overall energy very much. Mainly it strengthens her upper body, since she primarily uses her arms, but it stretches all her muscles, keeping her more flexible (she’s had issues with joint/muscle stiffness). In the last few weeks she is able to kick a little, just not with any real power yet. Still can’t walk unaided yet, but it is helping overall. We see a rehab doc and he’s the one who recommended water.

      Since you CAN walk (but it is exhausting/painful), I would think switching to water for a while might be a way to gain strength. For my daughter, it really has helped. I hope it helps you, too. Good luck to you!

    • Anonymous
      July 13, 2007 at 10:24 am

      One thing, when she swims, she wears an aquajogger belt, it helps compensate for the lack of lower body strength.

    • July 13, 2007 at 11:06 am

      Hi Jeff,
      Sorry to hear your news was unexpected. The bright side is that maybe you can heal faster because you will not be fatiguing yourself. Just look at it as a temporary four wheeled crutch. Everyone that replied before me has real experience in the situation and their stories sound wonderfully positive! I am really pulling for you!

      Dawn Kevies mom 😮

    • Anonymous
      July 14, 2007 at 1:16 am

      Hi Jeff,

      When I was in the hospital, they would slide me out of bed into a wheel chair and take me to PT. There I re-learned, one day at a time, for 3 months how to walk again. Twice a day (everyday) PT would take me for an hour of exercise and learning how to walk again. They started very slow while I was still in bed, then eventually one step and then 3 steps and on and on.

      I now walk with two canes and I am so happy that the physical therapists took the time and so much encourgement to get me out of the wheel chair. If there is a chance you can walk, get another opinion from another doctor and see about help with physical therapisty.

      I hope the best for you,


    • Anonymous
      July 14, 2007 at 11:29 am

      Thanks all for your support. I do hope, as some of you have suggested, resting my legs more will lead to further improvement, though I am trying to accept what is for now. Carolyn, yes there is meaning to what I am going through and I have spent a lot of time working on it, and had a recent session with Arny about it all.
      I don’t want to give the impression that I skipped any of the stages of recovery. I too did physical therapy in the hospital and rehab and I can walk, but only so far without pain and fatigue. I don’t blame any doctor or part of the process nor myself, nor the way I did things. Some of us get better faster, some of us recover more completely. As the doc I saw Thursday said, I have tried one way for two years and now need to try another. I have not given up hope, but am aware that not all of us recover as much as we would like and I am coming to terms with that. Thanks again. Jeff

    • Anonymous
      July 14, 2007 at 12:18 pm


      Ben, my fiance, is two-and-a-half years post GBS and starting to have residuals popping up. We saw a GBS specialist last week who said Ben’s problems are happening because his nerves are growing back, but they’re growing back wrong. Ben’s left leg is pretty weak, and he has a drop foot on the left foot, and his right leg compensates for the weakness and is very strong. After this long, and as far along as you are in your recovery, you’d think you would be completely healed by now. Unfortunately, this isn’t the case with you or Ben. It’s depressing, even for the caregiver, to think of everything you could do in the beginning, and now you have to go back to taking it easy again. Fortunately, the doctor told us things would improve, and I really hope they will for both you and Ben. It’s hard to see that now, but hopefully, by following doctor’s orders, you will be on the path to a better and brighter future. Try to keep your spirits up. I know it’s hard for you and your wife because it’s hard for Ben and me, but you can’t let yourselves give up.

      Best wishes,


    • Anonymous
      July 14, 2007 at 2:04 pm

      Thanks Shannon. It is hard to come full circle in a way. I hope Ben’s delay is only temporary and he makes good progress. I am willing to be patient and see what happens and my faith that it will work out the way it needs to is still strong. But sometimes the two years of pain and the recent lack of progress are difficult. Jeff

    • Anonymous
      July 14, 2007 at 9:03 pm

      One of the gazillion books that I have been reading said – DISEASE DOES FOR US WHAT WE WON’T DO FOR OURSELVES.
      My first bout with GBS caused me to leave PA for Florida. This bout of GBS 20 years later grounded me in PA so I can’t go back to Florida. Is that a Universal WINK or what???
      Still working on the WHY. But at least it makes this horror more tolerable. Hope others can reflect on WHY they REALLY got this. What did GBS do in their lives that they wouldn’t do?
      Let’s get metaphysical…..

    • Anonymous
      July 14, 2007 at 9:16 pm

      Carolyn: My wife calls GBS the perfect disease for us both, despite its ugly sides. It actually transformed my marriage in so many ways, all for the good. We have been married 37 years and had a good relationship but when I went down she stepped up and gain a lot of strength and self respect in doing so. GBS also forced me to turn inward and do a lot of soul work I might never have gotten to. So, I think you are right-there is a lot of meaning in disease and if we can find it we can grow a great deal. I still do not know why I had this last incident, but I am sure I will learn. Jeff

    • Anonymous
      July 16, 2007 at 10:38 pm

      It is nice to hear that you are blessed to have a partner that stepped up so that both of you benefited. As for going inward, You certainly were already on the path before you got sick as well as I was. Guess it took this monumental illness to force us to become even more introspective. I lost my body, my long blonde hair, my friends, and now I am losing my job since I can’t find a doctor to sign my form. Talk about losing attachments – I would make a great ascetic involuntarily. The first one who figures out the meaning of Life tells the other one!!

    • Anonymous
      July 16, 2007 at 10:41 pm

      You got a deal. I should have it all figured out any day now. Jeff