• Anonymous
      August 1, 2007 at 3:18 pm

      Hello Family,
      Today, when I was at physical therapy my therapist let me get down on the floor and try to pull myself up by using the off the floor mat, about 20″ high. I couldn’t push up on my legs to get up. My therapist and another therapist had to lift me up. I’ve often wondered whether I could get myself up if I put myself on the floor or if I fell when I was alone, so I just wanted to try in a safe place.

      Maybe with more exercising to slowly build up my muscle strength, I’ll be able to do it, but I’m a realist and I do know that this may be something I can never do because of my residual damage from CIDP. I’m satisfied with just the trying.

      I do believe that I will reach a point where I’ll be able to do a small amount of steps with a cane, but I know I’ll always need the wheelchair.

      My legs are like wet noodles right now!

    • August 1, 2007 at 3:43 pm

      Keep trying Liz! I admire your courage!

      Dawn Kevies mom 😮

    • Anonymous
      August 1, 2007 at 4:27 pm

      Liz keep trying because you never know one day you might surprise yourself and do more then you expect.

      I hope you get some improvement real soon.


    • Anonymous
      August 1, 2007 at 10:02 pm


      I have fallen several times transfering from bed to my wheelchair, what a big
      disaster. In pt, they taught me to get on all fours like a dog, then put up
      one knee, so your on one knee, but your leg is bent on the other side with
      the foot on the floor. Then pull up using most of your strength on the foot
      with the knee off the floor.

      What happens is the back of the thighs are the hamstring muscle, whereupon
      sitting in a wheelchair for a long time weaken without use. That muscle
      allows you to get up from a sitting position. To strengthen the hamstrings, I
      was told to lay face down on my bed and raise my calf up…ouch, it hurts.
      I have to do 15 reps each calf.

      Keep trying…you will be able to do it…

      Miami Girl

    • Anonymous
      August 2, 2007 at 11:53 am

      Never give up trying to improve, even in small ways, but always do this in a safe environment. I fell in our cabin on July 22nd, thought I had sprained or broken my ankle, but with a day of elevation & ice I could walk on it (gingerly). But then I fell again on July 30th in my livingroom, just a day after we got back home from our 10 day vacation, & this time I wasn’t so lucky. I finally went in to the clinic yesterday for x-rays & I have broken 3 bones in my left foot, again! So now it is back to the wheelchair for 4-6 weeks, very disheartening for me at this of year. There goes the rest of my summer!

    • Anonymous
      August 2, 2007 at 11:53 pm

      Hi [B]Liz[/B], so far I always needed some kind of support to get myself off the floor, my rollator with brakes on or the wall. It often hurts my feet doing this.

      [B]Miami Girl[/B], I have to try what you have learned in PT. It is new to me. I finished PT a week ago but never dealt with this issue. Instead, we concentrated on building up strength after 6 weeks in a wheelchair because of a fractured knee caused by a fall.

    • Anonymous
      August 3, 2007 at 1:30 am


      It does work…I’m sorry to hear about your knee.

      Why do your feet hurt? I have a question for you…if we build up our immune
      system…does that mean it will also increase the NK cells?


      I have other exercises…I was in a comprehensive rehab unit of a hospital.
      To be accepted you had to have a comprehensive situation, like a chronic
      disease and the disability. The Pt’s and Ot’s had master degrees to work

      You really will be able to get up…

      Miami Girl

    • Anonymous
      August 3, 2007 at 10:42 am

      My knee is completely healed by now. My foot hurts because it gets twisted when I pull myself up. The muscles in my feet are weak.

      I don’t know what really happens when we strengthen our immune system, how different cells are affected, B cells and the different kinds of T cells including NK. Good topic for some research.

    • Anonymous
      August 3, 2007 at 12:09 pm

      Miami Girl, I tried this morning but can’t get it to work. After I got on one knee I still needed to support myself on the bath tub to get up all the ay. 😮 I don’t have then strength to push myself all the way up using the leg that was outstretched. Maybe I am too old for this

    • Anonymous
      August 3, 2007 at 12:42 pm

      Miami Girl, you might find this site of interest


      It’s a bit confusing and doesn’t answer your question about NK cells. It appears that different supplements, herbs, vitamins, drugs, affect different parts of the immune system, positive or negative. Below is one section that caught my attention:

      [B]Activation of autoimmunity following use of immunostimulatory herbal supplements[/B].
      Lee AN, Werth VP.
      Section of Dermatology, University of Chicago, IL, USA.
      Arch Dermatol. 2004 Jun;140(6):723-7.
      ……… CONCLUSIONS: Immunostimulatory herbal supplements may exacerbate preexisting autoimmune disease or precipitate autoimmune disease in persons genetically predisposed to such disorders. Increased production of TNF-alpha may play a role, although more research is needed to clarify the mechanisms of such phenomena.

    • Anonymous
      August 3, 2007 at 2:01 pm

      [B]Whatever your little improvements Liz, You can always count on all of us here to be cheering you on. 🙂 🙂 [/B]

    • Anonymous
      August 3, 2007 at 5:14 pm


      It sounds like you have major weakness like I did when entering the hospital
      three times. However pt and ot strengthened me within two weeks.

      If you can, get a flex band, like they use in pilates exercises and put it on
      your foot sitting in bed, pulling your foot towards you. Your legs are flat
      on the bed in front of you. The rubber band is around or under your arch.

      Also, sitting on the side of the bed, feet on the floor, raise one foot to the
      ball and toes, stretching the arch…then come back on the heel, stretching
      the toes.

      Norb, get a tub transfer chair or bench…I have one, it is my best product
      I have ever ordered. I wheel up to it, slide on it, slide to the center and bathe. I got it from Invacare in Georgia, preassembled…two legs are out
      of the tub, two are in it…it has a back, soap dish. I have a hand held
      shower attachment to use. The bench cost $107.00 incl. delivery.

      I was afraid of boosting the immune system, because of the NK cells maybe
      multiplying. I was looking into the food grade hydrogen peroxide or the
      bovine colostrum. Both might do that.

      I see my neuro next wednesday…I’ll ask about the NK cells.

      When you strengthen your legs, the hamstrings and quads, the front of the
      thighs, you’ll be abe to get up. It took me a while to do it.

      Miami Girl

    • Anonymous
      August 4, 2007 at 11:11 am

      Miami Girl, I do have a resistance band we bought for our flight to Thailand earlier this year. Using it was one of the home work assignments in PT. I don’t know how much it helped. I quit a couple of weeks ago waiting for our son to carry the exercise bike upstairs. He did that last night. I thought using it would strengthen these muscles just the same.

      I don’t use a tub. Our shower is separate and has a long grab bar and built in seat. I feel very comfortable using it.

      Why do you think boosting NK would be a bad thing? They attack damaged cells, cancer cells, cells infected with viruses.

      Thanks for your reply and take care.

    • Anonymous
      August 4, 2007 at 3:33 pm


      What I have researched about the NK cells, is that with CIDP, there are out
      of control. With this disease, they will kill the white blood cells that are good
      and have none of the receptors ear-marked as an invader…thus, we are in
      an attack-mode, exacerbating our weakness. NK cells do not differentiate
      between the good and bad cells.

      In the article from the newsletter, that was what was discussed…how do
      inhibitors of the NK cells stop the progression in GBS, but not in CIDP? Some
      think it’s genetic, although, I have had genetic testing done, with no mal-
      formations showing.

      I researched inhibitors of NK cells for peripheral neuroathy, but to date, there
      are none. There has to be a way to shut them down, without using those
      awful corticosteroids, allowing the whole immune system to be turned off.
      If there could be a way to allow the NK cells to only attack the bad cells
      and leave the good cells, then, we wouldn’t be here with this disease.

      NK cells are necessary, but they run amuck in us, causing our weakness
      and nerve problems.

      Miami Girl

    • Anonymous
      August 4, 2007 at 4:02 pm

      Liz don’t give up! 22 months after onset I am still not able to count on being able to get up by myself if I fall. I have to have a chair or the couch or the wall. Some days it works and some days it does not. One day I was showing someone how I can get up to all fours but am not able to rise up to kneel on my knees without some from of support that has some height to it. Bringing that one knee under me is a problem too. Everyone has a weak side, so make sure you try to do this with one side….take a deep breath and a rest and then another time try the other leg that might be stronger. My ham string are weak but getting stronger. My back muscles still need lots of work and so do my abs. If the abs are weak so is the back…..both areas have to be strong! So I am still working on my Ham Strings, Abs, Back and Hip areas for strenght. It is coming along slowly. Alot of that work was done in the pool so I did not have to worry about falling flat on my face! With less weigh in the water the muscles did not have to be as strong either before I started seeing results. One day trying to show my family what I could not do….I did it and stood up in the middle of the room. Some days I can do it and some I can not. Still need more work to build up that strenght. The pain in the foot did just recently go away so I don’t worry about breaking something in my foot now, since I don’t have that stiffness in the ankle and have more range of motion. My feet are doing better than my hands. For the most part they are constantly burning. When my feet start to relapse I ask for a massage and work them. That is so far what is working for me. You just have to find what works for you. That is why you can not give up! I think it is great that your rehab people work with you so you can see what you are able to do and now they know what to work toward. We are all behind your success! Keep up the good work!