Again another fantastic post from your fav. PT student.

Thank you so much for the info.
I dont think i read Ladykats, post about that. I have been in and out doing different things for this presentation. I got back earlier this evening from trying out the feldenkrais method to see if it would benefit GBS…my decision is still pending more knowledge. However if like most of you have chronic pain..this is a GREAT method to assist in that…basically it retrains you to change the habit you have been used to..and learn a new one…focusing on what you CAN do more so then what you cant. So ill keep everyone posted.

thanks Cincymom!

MAria T. future PT hoping to make a difference.

PS..bought a good book today..BED number 10 and American Academy of Neurology Guillain barre from diagnosis to recovery.[QUOTE=cincymom]Well, later on, when nerve connections are coming back, you can do lots of things beyond ROM.

My 12-yr-old was primarily affected in her lower body, motor nerves mostly.
The hardest things involve lifting her legs (as in taking a step w/out dragging feet) and side motion of legs (whatever that outside leg muscle is).

Her therapist has her doing bridges (on back, lifting butt off floor). Now, she couldn’t have done that 3 months ago! But now she can, and it is helping.
She started w/ only a couple reps and now is up to 2 sets of 10.

Also, she had her lifting her leg while sitting and trying to get it up onto a thin box. Then we increased the size of the box, eventually getting it to about 4 inches. Then we started doing it while standing (holding her walker, b/c she can’t yet stand alone).

Other exercises were ‘snow angels’, laying on back and scisorring legs. Initially she could hardly move them, and now (7 months later) this is pretty easy.

Also, we do straight leg lifts. She can still not lift her legs up very far, just 6 inches or so (but initially couldn’t lift at all). But she tries to lift and we assist by lifting it up higher while she focuses on the motion. We do those on side and on back. Actually, thinking back, we started with leg slides (bringing knee up while sliding foot up).

All her exercises were initially adapted so she could do them w/out working against gravity.

Other interventions were DAFO leg braces which she wore to prevent foot drop. Now she is on her feet more and doesn’t need the braces as much.

Now the therapist has her working on the treadmill (she holds on for balance and stability). She focuses on form, how to lift her feet and step. She does it forward, walking backward, and sideways. Very slow speed. Therapist gets on treadmill w/her and stands on edges. L wears a big velcro belt so therapist can grab her when she loses balance or legs start giving out.

We are also doing some simple yoga poses, but this is on our own. However, they help keep alignment and stretch. Tightness was a HUGE issue esp when movement was more limited.

My daughter is getting around on crutches now. Her arms are very strong! And her legs are getting there little by little.

Hope this helps. Did you also read the Exercise Family thread by Lady Kit?
Lots of good stuff there about what people find helpful.[/QUOTE]

Thanks so much for the well wishes. I went to see a Feldenkrais practitioner the day before yesterday…I was a little nervous a little skeptical but i jumped in with both feet. I have a SI joint problem and she helped me with it as an introduction to Feldenkrais. What neighborhood are you in? At least you are 1 up and know all about the various interventions.
Thanks for responding

Maria T. future PT hoping to make a difference![QUOTE=homeagain]I think it all depends on your teachers/assessor/evaluators’s biases? Lets get real here?
I loved Feldenkrais, accupressure and various therapeutic massages, but it took me 3 years before I could TOLERATE any therapist trying to do any massage on me! My sensory nerves [what were left?] would protest LOUDLY when touched for more than X seconds or minutes….The BODY AWARENESS aspects ARE critical tho as an affected person w/sensory loss really does lose sense of where they are in ‘time and space’ to a potentail danger point.
The simplest exercises -those that improve balance and small muscle strengths are key to learning or RE-learning how to walk correctly and grasp simple things such as glasses without two hands-correctly. I’d have been a dead duck were I not already aware of physical trainings such as Feldenkrais, Pilates and other philosophies…it was because my prior life made me aware of the simple things such as body position. center for balance etc…I asked my neuro for PT…I have to admit it was low on his priority lists [he was trying to diagnose me tho at the time] BUT when I ASKED I was not denied….and I ask for as much as my insurance allows because I KNOW I don’t have all the discipline I would like to keep up on it all…

Goshes! I sure wish YOU were in my neighborhood and I could be your guinea pig! WHAT a pair we could be? Dreams are just that tho…

As they say on Broadway – Break a Leg! or…Knock ’em over! I have faith.[/QUOTE]

A cheerleader? I want to be more then just that. Thats why i love my field and I want to make a difference. GBS has caught my interest and I am constantly reading new things so I can learn more. I am sure from what I have read the pain is real and it takes time. As someone else on here told me..GBS stands for Getting Better Slowly….and Going Beyond Survival…and its my job to help do that.

Maria T. PT hoping to make a difference![QUOTE=Judi Z]I am one of those who had such extreme pain that I couldn’t tolerate touch. For several months, I could only touch little fingers with my husband 🙁 Then one day I realized that if I put my hand on top of his I was controlling the pressure. And I continued to improve from there. I still have many days with “sensory overload”. I love music but on those days it’s as little noise as possible. And riding in the car can be a challenge. Everything seems to fast. The vibrations hurt my feet and legs and sometimes I will get a headache. How well I remember not being able to even have a sheet over my legs; it hurt so bad.

I am 12+ years post GBS but the residuals haven’t left altho some have improved . . .

If a patient tells you something hurts, please believe them and let them guide you on what they can or can’t do. [I]Not one of us wanted this disease; we are working very hard to improve our lives.[/I] We need you as cheerleader.[/QUOTE]

Amy,
It is my pleasure to help out where I can. Since beginning with this presentation I have really become involved with GBS. As far as your daughter goes..the brushing session was more then likely what we call desentization. Trying to get your daughter used to touch. not always comfortable for patients with GBS but it gets you one step closer to tolerating touch. Was the brush the only thing that was used? Different textures? Focusing on what you CAN do…boosts confidence..Core body is absolutely essential with any type of patient. Probably not the strongest point for most of the world..but if we work at it…we can get stronger.

thanks Amy.
Maria T. Pt student hoping to make a difference.

I havent read joy in the morning is that a GBS book? Right now I am reading bed number 10…in btw school and final exams. WOOHOO….[QUOTE=gracie]Thank you Bxrgrl for being so passionate about helping those with GBS. When our daughter Kenna had GBS she was only 4 1/2 (in 2005). The PT, OT, and speech therapy staff was outstanding. The first thing (and perhaps the most important in my mind) is they kept Kenna positive. Like you were saying, they helped her realize what she CAN do and not what she CAN’T do. They respected her (and us) but pushed her just a bit further each day. She was paralyzed from the neck down and in a lot of pain. Today, she is walking, running, playing and at least 75% back to health. Thank you for what you are doing, it makes a difference!
One thing that was very good for Kenna was working her core. She used the exercise ball and reverse sit ups to really get that core strong. Also, she had ‘brushing’ sessions where they would take a very soft brush, start at her feet and go in a circle toward her heart all the way up her body. This was about 2 months into it when she didn’t have so much pain to the touch. That seemed to make a difference in her energy and her pain level.

~Amy Kuncaitis
Author of “Joy in the Morning”
[url]www.joyinthemorningbook.com[/url][/QUOTE]