AnonymousMarch 4, 2007 at 11:00 am
[FONT=”Comic Sans MS”]Hi everyone[/FONT]
I’ve read about some of you having PT with a regular therapist and some noting that going to the store, etc. is a good substitute. I had a bit of PT while in the hospital last November plus about a month at twice a week in a very good hospital-run PT facility. I was discharged from this outpatient PT with the instruction to do my exercises at home.
Well, I tried. I trudge up the stairs to my second floor several times a day and I try to do the formal exercise when I have the energy. Frankly, I don’t see any improvement. My knees still buckle and I can’t seem to wean myself away from the walker and cane. The latest was a visit to a Neurologist who specializes in recovery because of my hip pain and sometimes falling.
His diagnosis is that my core muscles have gotten so weak that I am not able to keep things in place around my hip joints. So–now I’m going back to PT to strengthen the core!
Like so many of us, tiredness keeps me from truly exercising, so I am not too optimistic on this new development. Any comments about how you have fared with PT? Does it really help? Any friendly advice?
AnonymousMarch 4, 2007 at 12:35 pm
PT is great but you have to be careful not to overdo it as extreme fatique
can come on quickly and cause you more harm then good. Slow PT is better for GBS/CIDP which alot of physical therapists don’t quite get. They’ll try to work you so hard and cause you to have more problems. PT does help alot to keep the muscles from atrophing(spelling)
You can build all the muscles but it’s the nerves that make the muscles work and when they are damaged and cannot send the signals to the muscles to work you cannot make them heal any faster or work as they did prior to GBS/CIDP because you are doing PT. So just take it slow and easy, those nerves of yours need time to heal, then and only then can the nerves help the muscles work properly.
AnonymousMarch 4, 2007 at 2:54 pm
That is one of the things that Nate’s PT person keeps stressing to him. She keeps telling him not to push himself. She says he will backslide if he does.
To me that is great. She is very smart and knows what can happen.
You can only do what your body is ready for at this point. The nerves have to regenerate or grow new roots and that takes time.
The only way you will know that this has happened is when you start feeling stronger muscles and they don’t get weak quickly.
If you still feel muscles are not responding, it means they can’t yet cause the nerves that feed them are not done repairing.
Pushing yourself can only hurt you. You cannot get it all back in a short time. It just doesn’t happen that way. You have to give it the time it needs.
AnonymousMarch 4, 2007 at 4:24 pm
I have been on therpy going on 2 months 3 times a week. My therpist knows about GBS and he said it has to be done very slowley. If we try to push it we will get a set back. 2weeks ago he had me go up and down a flight of stairs two times. The next day I was wore out. my legs were weak and I was tired. I told him and now he cut it down to one time. I feel better and my legs are steadier. He said more is not the answer. They have to be exersised slowley and over time. I now can walk with my cane and without it when on pain meds A good therpy program or advice is the way to go.
AnonymousMarch 4, 2007 at 5:39 pm
Thanks for the advice, guys. This afternoon I went to one of the big Costco stores here with my wife. I threw my cane in the basket and trudged around hanging on to the basket’s handle. By the time we got back to the car I was exhausted. Once we were home I sank into a chair and fell asleep for an hour.
That was my exercise for today!
I know from my conversation with Neuro Doc #2 that muscle cells won’t fire if the muscle isn’t properly enervated. On the other hand they lose tone if not exercised. So I think I’m in a catch-22 (as well as a lot of us) as far as PT is concerned. I’ll not over-exert my bottom half, the affected part of me from GBS, but I’ll also continue to use my therabands to keep the upper half strong.
Thanks again for your good advice.
March 4, 2007 at 6:52 pm
I also used daily activities as PT when I first got ill. I was too stubborn to stay down too long. But it killed me to have to ask for help with dish washing…I just couldnt scrub or stand at the sink too long…but you can only do so much, right? I remember once I was able to walk without much effort, going to the store was hard. It felt as if my legs were over tired and it took me awhile to be able to lift anything heavier than a can of corn off the shelf. I walked with a bit of a limp when my legs (esp my left) were overworked. But, I knew even a little movement helped keep things from getting too out of whack. It is such a thrill when you realize you can do something you werent able to do even a week before!
AnonymousMarch 4, 2007 at 7:39 pm
When I did my PT for GBS (in the 80’s), I was never put on any machine, never used weights etc. Most of my therapy was resistance, learning to roll over using the correct muscles and limbs, learning to crawl using the correct muscles, learning to move from a sitting position to a standing position, and very importantly, how EXACTLY to walk correctly again. They showed me how to swing my hips, what on my foot to put down first, how to swing my arms etc. This would normally, towards the end, be about an hour. I’m curious, is that still done? When I tell someone that they should get PT, this is how I see it, maybe things arent quite done that way anymore, or maybe its the way the PT’s in South Africa did things.
AnonymousMarch 5, 2007 at 9:28 am
Yes therpy really hasn’t changed much since the 80s. I am told which foot goes down 1st how to use my cane the right way and the exersises I can and cannot do. The therpist work on the mucles and getting them to accept the signals from our minds. I also get an ice treatment when I finish as have pain in my lower back. This week I will going from 3 times a week to 2 times a week. It is slowley getting better and have given it all to God all I do is now is follow him.
June 7, 2007 at 8:21 am
Im with therapyst to gain more power and help me walk right and also get my back to be normal again. I also is learnig to help my self if I fall to the floor. I have not enough strength to help my self yet. I hope it come soon. I have been very hopefull that this will help me gain my strength.
AnonymousJune 7, 2007 at 8:58 am
Hi Gerry: I have exactly the same problem with my hip and also my knee. My muscles are so weak they are not giving either enough support and it is for me very painful and a new development. My PT with Kaiser sucks so my doctor doesn’t push that, but does recommend exercises. I have been doing them for a few weeks and see a slight improvement-very slight. Also like you I can’t get off the cane or the walker. I wonder about age being a factor here-I am 61 and wonder how old you are. I will keep up with my exercises because it does help with the pain but am not too optimistic of completely resolving the problems. By the way, I do the same thing with throwing my cane in the shopping cart but know I can’t do a lot of shopping that way without getting exhuasted. My wife is after me to use the little electric cart the store provides but my pride won’t let me do that yet. Best to all, Jeff
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