anxiety and physical therapy

Amy,

Regardless of how hard your therapist wants you to push yourself, your body wont do what it cannot do. Considering you are still numb from the chin down, im not sure how or why the therapist wants you do walk without the AFO’s. Only IF and WHEN you are able and feel comfortable,only the should you walk without the AFO’s. If the muscles have atrophied and are not in shape then you should definitely be still in AFO’s. I wonder if she realizes that ‘making’ the muscles do something they are not ready to do causes serious damage to the skeletal make up too.

Just a F.Y.I, a very good friend of mine broke her Tibia because she didnt want to wear her AFO’s, and she cannot feel her feet and has drop foot. The result has been months and months of increadible pain, and a couple of surgeries to try and mend the bone.

Amy, I’m sending you a huge HUG! No words of wisdom, just a big ol’hug.

Amy, You need to get a new pt/ot one that has experience with gbs people! Don’t walk without afos especially since you had the release. I don’t want to put a damper on your hopes at this time but if you walk without afos and you can’t control or feel your feet you will have alot more problems than you have right now. PT pushing you beyond what your body can handle can push you into a relapse and you don’t want that either. I understand how much you want your old body back, I’m in the same boat. Just try to keep a positive attitude, it will carry you through the ruff times. Hugs!! Take care.

Man, it is so frustrating when people don’t get it. You would think our therapists would know better but they often don’t. Listen to your body and do what it tells you. in the long run you will be better for it. Trust me. I had GBS 25 years ago and no one told me this. I pushed way to hard and now I am paying the price. It wasn’t worth it. Take care of yourself.

Amy,

I hear you. It is a challenge from all sides to feel that we are being heard. I personally find coming here a help. This is the one place where we can go and vent and no one judges us. It is a chance to connect with floks who get it. I also enjoy going to the Lighter Side thread. It is a chance to kick back and have fun with people who share things in common with me. We also have the Tavern. Join us there. It is s cyber bar where we laugh, joke and have some fun.

Take good care.

Well I guess Amy you can call me a quiter! I was forced to do the physical therapy stuff too and my body was not ready either. In fact I have quit PT three different times. I have tried doing it but my body was just not ready. I guess the best thing to do, is do what you can do and in time the other will come.
Take it one day at a time! Try not to get too frustrated.. even though that is hard to do when we are sick. I am a perfect example of that word. Not easy I know!
I remember back 17 years ago before I started getting sick with Lupus and I saw myself dancing and swimming and doing so many things. And each day I do try but it’s hard. Very hard!
So I truely feel for you Amy and hope things get better. I remember when I was bedridden for a while and that was many years ago before I gt diagnosed with Lupus. They were trying to figure me out. It was so depressing.
I started using my mind over matter. Anything stressful I tried to block it out and I started my own goals. When I started getting treatment back then, I went outside and started building my body up by sitting outside with a spoon and planting flowers. Sliding from ground area to ground area.
I had to crawl for a while and then I started walking again. That was my story with Lupus. Now! If I can just focus on getting this CIDP in control then I will have my second story.
Together we can do it as a team! 😉

Amy:

There is a careful balance with GBS and physical therapy. For physical therapy to work you need to push yourself to do things that you are not comfortable doing. It is the therapists job to learn enough about you so that the therapist will make sure you are doing enough to regain the use of your body. To evaluate what they need to do and how to do their jobs with the greatest efficiency, then you may have to do things you aren’t comfortable doing, like walking without AFO’s. They may need to see you try in order to find out what they need to work on to ensure you will be able to walk without AFOs in the future.

With that being said, you need to keep in mind the rule of thumb for GBS and therapy. You have done too much if it takes more than 12 to 18 hours to recover all of your strength and energy after a workout session. The only way you can learn what a reasonable workout is like is by trial and error.

Please keep in mind that you and your therapist are a team and that you both share a common goal, your future health. In order for a team to work, you are going to have to have good communications. Ask a lot of questions. Give your therapist as much feedback as you can. Make sure you know why the therapist is asking you to do things.

Amy, please take care of yourself and remember that you need to be your own health advocate.

Lee

Amy, enjoy your luncheon tommorrow. Thie week is a chance for you to see how you can manage without your mom. You may surprise yourself and be able to do things you didn’t think you could. And i am sure your dad will love having you all to himself. Dad’s and their daughters are special!

Amy,

I agree with Lee, that your therapist is motivated to get you do do things that are uncomfortable – even push you “a bit” to see where you need progress and where things are ok. I had rounds and rounds with my therapist – but in the end, I saw where she wanted me to go, and we worked together to get there.

About your luncheon, I too, had feelings where I was glad to meet people who didn’t know me before GBS. However, I did (after some time), discover that I was alright being GBS-guy. That I had overcome something that many others cannot imagine.

Hang in there, and be safe.

Hi Amy,

My CIPD is improving, but I need my walker outdoors. My neuro asked me if I ever go without the walker and I explained that while indoors I feel safe without it but that outdoors it is necessary and he didn’t tell me to change. Bless his Soul.
A good friend, however, who has never experienced a nerve disorder told me to go without the walker and that I may have become dependent on it.
Maybe experts would diagree on this one, but I will know when I can handle the outside without my walker.
We are all unique individuals and have unique abilities just like athletes in different sports.
You said you are driving some.. I am not sure if I could drive right now, but when I test drive I will know for sure.
I would rather be safe than sorry so I am very cautious when I move around, and I don’t want to end up with more problems than I have already.
I did fall face down on the treadmill 3 weeks ago for two reasons: 1. I had the speed set too high and was almost running. 2. I was wearing crocs and not my regular walking shoes with the orthotics that I had before I got this disorder. My toes caught in foot drop, because I can’t quite do heel and toe. That taught me a lesson.
I mostly walk and do the bicycle and respect the treadmill, but these activites are comfortable for me right now. I think any activity that has us moving must also meet our comfort level and then we can build on that.
I hope someday I can toss my walker and drive again, and in time you will probably not need your AFO’s. Just be careful!

But, part of it is up to YOU to educate your therapist about your medical issue!
OK Yes, there are some ‘go-getter’ therapists out there, and they are under pressure to PRODUCE results as fast as possible – Kind of like hairdressers doing the optimum numer of ‘heads’. So, the therapists either no CLUE about such medical issues or are simply pressured to ‘produce’.
Ask this one to listen or ask for another therapist. Sometimes we simply do not connect with one indivdual and another works. It’s either your money or your insurance co’s and that =your money in the premiums. Don’t be shy about this? Would you let your hairdresser or anyone else push you around wrongly? And, yes, sometimes stretching muscles that don’t want? HURTS! But, these folks know or should know, how to do it safely. Maybe for you? Just not soo much at one time?
What I’ve done in the past [and I’ve been thru many p-therapists?] Is come armed with a fact sheet from the NIH about GBS or, as I have CIDP. Then I make it clear that I am very willing? But I drove here and if you over work me? I’m not going to make it home without accident [implied liability left unsaid].
Once they READ about such as we have? They get a better grasp from their perspective on how best to ‘deal’ with us. And, yes, now and then, you’ll get the WALK! command. And, you mite be afraid? But, if they are rite there to catch you, cool!
Also, the programs usually want to work up to 50+ ‘reps’ of many different isolated muscle exercises, Ask IF you could trade off and do 25 of this, then 25 of that, and back again. That’s what I do and find I’m FAR less tired for the ‘doing’. And ultimately in the end? YOU can do more than the ’50’ and not have the ‘wobbles’ afterward. Surprise yourself.
Lastly, and getting your doc in on this is crucial! Is to ask for what’s called a ‘home program’ where you get a theraband or other tools along w/copies of exercises you can do at home in-between sessions! Do some here, then there, then more each place and it really can and does add UP.
I keep coming back for more punishment, And it keeps working, so, I’ll keep at it. Moving on my own two legs rather than devices is far superior to the alternatives. FAR more freedom of sorts. So, work at it, keep at it. Please.