muscle building

    • Anonymous
      December 17, 2009 at 9:13 pm

      Alice actually went to have a Thai massage yesterday, you know the kind where you feel they should be paying you – not you them – for inflicting such pain on you ? Well, Alice used to love going to this place, but with the onset of cidp and the pain from her neuropathy, the last ones she got were excrutiatingly painful. Yesterday she loved it. And she felt it helped with her muscle pain. Going back on Sunday.

      We saw a wonderful neurologist this week, Dr. Belaga.. I never thought I’d put those 2 words in the same sentence, “wonderful” and “neurologist”. Alice found him on – after being so exasperated with the meeting with Stanford neurologists (pretentious and non-receptive).

      Dr. Belaga feels that Alice’s pains stem from her muscles rebuilding. He was very impressed with her reflexes : her legs kicked right out (this is absolutely amazing !) – very weak reflexes in the ankles, but he said that seeing how they’ve come back in her knees there’s no reason why they shouldn’t come back in her ankles, they just take more time.. He suggested Alice try a med called Savella for her muscle pains – this is usually given to fibromyalgia patients who have chronic muscle pains. For now she hasn’t started them because they do have a whole list of side effects including nausea and sweating.. she doesn’t need this ! (The chemo has put her into menopause for now so she’s already been battling with hot flashes.)

      Alice will be going to see a physical therapist to help with this healing process. Looking forward to getting tips on how to increase her strength and work on her weak spots.

      She gets a bit impatient sometimes because she wishes the healing process was quicker – she still gets tired early but much less than 2 weeks ago, and the progress is clear. Her energy level has improved : now she’s going to bed at normal times again, and is eager to go out every day. She still can’t run a distance, but her stability and strength have noteably improved and continue to do so. We go out for a walk every day, and 2 days ago we went to do our exercise on the Vallejo street stairways.. Walked up all the way, with frequent stops (Alice’s pulse was high – I guess her muscles are needing a lot of oxygen to build back up), but she made it all the way up. It really is amazing to see these improvements.

      The weekly blood results have been markedly improving from one week to the next, and counts are almost back to normal.

      Right now she is playing on the Wii, bowling with our housemate Judie – she says she should make her avatar bald… Actually, her hair has just started growing back, but you have to look very closely.

      A month ago there’s no way she could have made movements like this.

      It’s very exciting to watch her progression…

      There is absolutely no question in Alice’s mind that the stem cell treatment got rid of the CIDP, and any pain she is feeling now is linked to her healing and muscles rebuilding.

      We’re going to spend Christmas with friends up in snow-covered mountains in Arnold (3 hour drive). We look forward to it, and going for walks – we were there last year – but Alice didn’t have the strength then to go for walks.

      Wishing you a cozy and fun-filled Christmas with your loved ones.

      🙂 sophie

    • December 18, 2009 at 9:04 am

      Merry Christmas to you and Alice! Alice’s healing is a nice Holiday present for all of us!

    • Anonymous
      December 18, 2009 at 11:26 am

      [QUOTE=KatyK]Merry Christmas to you and Alice! Alice’s healing is a nice Holiday present for all of us![/QUOTE]

      [I]And from me as well. What a delight to read your post, Sophie. Thanks![/I]

    • December 19, 2009 at 8:52 am

      Great news!

      Physical therapy was very frustrating for me at first. They would place a hand towel on the floor and tell me to move it with my foot with at sweeping motion while keeping my heel on the floor. I couldn’t and the effort would wear me out.

      KEEP AFTER the physical therapy and don’t give up. Not only did it improve my muscle tone and re-building muscle and strength, but either the damaged nerves were repaired or I developed new neural paths. I’m now doing all the exercises I was before I came down with CIDP (I haven’t run a 10K yet though).

      Again thanks for the posts Alice and Sophie. Good news is so encouraging to us all.


    • Anonymous
      December 19, 2009 at 11:46 pm

      yes Ryan has been doing physical therapy since he got CIDP and they give him lots of rest in between exercises and it has helped with rebuilding some of his muscles and strength. Ryan had a lot of muscle wasting but over the past 4 months he has started getting some of the muscle back.
      Ryan physical therapist and occupational therapist specialize in spinal cord injuries and are awesome because they understand Ryan’s situation. RyaN IS THEIR first CIDP patient but they have had lots of GBS patients. The fact they speicialize in spinal cord injuries I beleive makes a huge difference int he way he is treated. I beleive physical therapist who dont have any idea of what CIDP is or spinal cord issues dont understand the CIDP patients and wha they go through. just my opinion.
      plz keep us posted we have beeen wondering how Alice has been doing.

    • Anonymous
      December 20, 2009 at 6:51 am

      Alice has to keep in he mind, this is going to take at least 6 months to see if this is going to work all the way. DON’T RUSH IT !!!

      I am so glad she is doing so well. She must be so amazed by all this, and just walking normal without her evil prednisone…lol

      I am glad you have a nice “white Christmas” planned–hope you DO have the snow then.

      Frank and I have a nice Christmas planned with his Sicilian seafood dinner Christmas eve, and Sicilian specialties for Christmas Day, A very good friend flew over from Holland to stay with us, and get the house ready for Christmas this year. She was not sure that this might be my last Christmas, and knew I would need help to get Christmas ready. She’s already wrapped all our gifts for everybody–wow–that was a lot of work right there. And is busy getting the dinner table linens and napkins ironed. She is much help to us this year. Frank put up the Christmas tree yesterday, and it’s all decorated nice ! Plus he put up the outside lights. He’s working real hard. My job this year is to do the stockings– 14 of them. I had ordered all kinds of fun stuff–so, it’s 345am right now–my sleep hours are always off after I get chemo, so I’m working on them right now…lol.

      Frank and I wish you and Alice a wonderful Christmas, and much luck, GOOD HEALTH, love and happiness for 2010 !!!
      Ken and Frank