AnonymousDecember 11, 2006 at 1:48 am
62 yrs old. Just acquired GBS 16 Sep 2006.
When I bend at the knees at some point I just fall down. If I try to walk with a walker I must lock one leg before I dare take a step with the other leg or I fall down. It’s like someone turns the switch off and I just collapse with both legs caving in. I have been lucky to land in all the right places without too much damage.
I am really careful because when the legs go its impossible to hold myself up using railings or hand supports. All they do is enable me to break the fall a little before I hit the floor.
I know the exact moment the switch goes off but there is nothing I can do to react its like the twin towers in NYC.
Anyone have this problem? Have you developed any tricks to compensate?
AnonymousDecember 11, 2006 at 8:47 am
I still have the same problem, I try to do most of my exersize in the hydrotherapy pool, it dosen’t hurt when you fall.
The worst is when you try to walk down hill, be very carefull as I broke both legs this way last year.
Be carefull how hard you push yourself, it doesn’t help your recovery if you over do it. The muscles need exersize but the nerves need rest.
AnonymousDecember 11, 2006 at 5:48 pm
When I was sick with GBS (nearly 3 yrs ago now) I had a similar problem with my legs. In addition, my forearms and hands were paralized, so when I fell, I couldn’t catch myself to break the fall. I fell rather hard several times, but luckily, I didn’t hurt myself.
The paralysis in my arms went away, and my legs got much better, within 6 months. I don’t fall anymore. I hope you will recover too.
AnonymousDecember 13, 2006 at 11:33 pm
Nate has fallen 3 times since he got home 2 1/2 mos ago and come close half a dozen other times.
He can walk with a walker but not very well and not very long before his knees buckle.
His legs are still very rubbery and very wobbly.
His leg muscles are not coming back too well, 11 mos out.
It just tells us that the nerve damage he has is not done healing and sending good signals, or the muscles would be able to get stronger.
It’s discouraging to him at times but he is eager to get back into pt again now that the insurance mess is over.
He awaits the phone call and he’s ready.
I know he will get better.
December 14, 2006 at 10:04 pm
Lots of therapy. I went all the way down with gbs march, 2006.Was released from the hospital July 28, 2006. When I was released, I was on the walker, and at that time, if one knee went, the other followed imediatly, so down I would go. Now in December here, they both start to give out once or twice a day, but not at the same time and there are enough recovery muscles that kick in so I don’t go all the way down. I still have the fear of either going down or loosing my balance. The balance thing is the hardest and I think it hinders recovery in that I walk differently now than I did before gbs. When first learning how to stand and walk again, they kept saying to lock one knee before shifting weight to the other, but now I have to unlearn it so I can walk the way I should.
AnonymousDecember 15, 2006 at 1:12 am
Gene I crashed with the GBS and hit bottom. I had to learn to roll over, sit up and stand. Then come the baby steps in the step down unit while the trache helped me to breath and get high enough levels of oxygen into my lungs and blood to feed those muscles. Getting the message to travel was slow….some things took days…..some took weeks and some took months. It has been over a year now. I am still working for more stamina and strenght. Even if I am taking two steps forward and sliding one step back I am still heading in the correct direction.
I can remember going to see the rehab doctor after I got home and I was so devastated that I had one hard fall at home and had had one in the hospital. She reminded me that I had to learn all that stuff over again like a baby. Only thing different was I had done it before and had the memory of what it was like to stand, balance and sit and take a few steps. She reminded me that only falling several times was very good. Look how many times a child falls trying to learn to walk, turn and run! So I guess I did well!
I also did take advantage of exercise in the rehab heated pool. 94 degrees! I had tried later to use the aerobics/lap pool but could not stay in that 84 degrees that long. The HOT TUB at 104 degrees was totally out when you have GBS. I used all kinds of floation devices to float around and I can tell you I battled the tiny waves a few times. My biggest job was not letting the current coming out of the filter take me into other areas and pushes me into people. But just the movement of the water did wonders for my balance and core muscles. Strenght and stamina are coming back slowly!
Keep up the good job of getting better!
AnonymousDecember 15, 2006 at 5:31 pm
I wondered if anyone else had it as bad as Nate did. Its kind of nice to know you did too. I have never read a post with those words “learning it like a baby”. That is exactly what he has had to do.
When he was in St Joseph Hospital, they never took him out of the bed. They just did everything with him in it.
A month after he was diagnosed, they put him into the convalescent hospital.
One day I watched them put him onto the bed with a lift, then they sat him there and let go.
He flopped over backwards. He could not even hold a sitting position. The look on his face was awful.
He just turned his head. He didn’t even want to look at me.
He has had to learn everything over like a baby too.
He could barely use his hands and he could barely even lift a 1lb weight, his muscles were so weak.
Just learning to use his arms and even be able to hold a fork was really hard. He couldn’t write his name either.
He has come a long way in 11mos but its still a daily struggle for him.
His hands still hurt a lot despite Neurontin 3 times a day.
His leg muscles are still jello but he can walk just a little.
Sometimes I look back and wonder in amazement how he even got what he has after so much damage.
I guess its a good thing to do. It helps everyone feel better.
Hospitalized 9 1/2 mos
AnonymousDecember 17, 2006 at 2:56 pm
Thanks for all your reply’s your all great.
You guys all got hit worse than I did. I just suffer with the leg, bowel, face and eye lid problems plus I lost 60% of my upper body strength. It did not affect my breathing thank God.
I set up my garage with weight lifting equipment and set up rigs with chains and ropes to allow me to compensate for some of the things I need to do.
Even though I have to crawl to some equipment or use a rig on others I am able to perform all but one exercise without assistance. My wife has to lift my legs in order for me to do leg press’s.
So far I estimate that I have regained 5% of my upper body strength. However, I have not regained any of my coordination or balance.
After reading all of your replies I feel lucky and will continue to be patient.
I will include you in my prayers.
AnonymousDecember 17, 2006 at 5:34 pm
Breathing is one of the most common problems I have seen and read about. You were very fortunate not to have any problems with that.
Nate could barely get any air into the top of his lungs, none in the bottom at all.
His breathing was down to .97 and thats low.
The doc was just about to intubate him but he talked to Nate and told him if they did it would be very hard to wean him off, and to just keep trying as hard as he could to breathe.
Nate did his best and got it back up to 1.5. His doc said that would be enough as long as he kept it there and didn’t go any lower again.
It took him 3 mos before his lungs were filling up well enough to not be puffing the way he did. He still has problems with the lower lobes filling all the way though.
He lost bowel function also as well as bladder control for awhile there.
He still has problems telling if his bladder is full but bowel control is ok, but he needs immodium a lot.
The varitety of things gbs affects is amazing to me. I find out more and more all the time, even after 11 mos.
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