First post. How to overcome AFOs.

    • Anonymous
      February 17, 2011 at 3:51 pm

      My name is Brandon, and I was diagnosed with CIDP in dec. 2003. I was given a 5 day IVIG and then went home to physical therapy. Then in Feb. 2004 I was given another 5 day IVIG and had significant increase in what I can do. I have went from not being able to stand at all to walking just about any where. The biggest issue I have now is foot drop or whatever it is called technically. Due to this I have to walk with AFOs, and I was wondering if anyone has any tips to maybe working my way out of the AFOs, any suggestions will be greatly appreciated.

      Thank You,

    • Anonymous
      February 17, 2011 at 7:38 pm


      I reckon, from what you wrote, that my approach to getting out of AFOs would be more IVIG more often and see what happens.

      No matter the treatment method, I would unceasingly seek more aggressive treatment along with a second and even third diagnosis.

      Concurrently, do what you can to attempt to make those muscles work. Reliable EMG/NCV testing by a neuromuscular specialist facility will likely determine if improvement is possible.

      good luck.

    • Anonymous
      February 17, 2011 at 8:21 pm

      That would probably be a good start. I am from the “boondocks” of Virginia, so I don’t have the best doctors right at my disposal. It took two or three months to get sent to a specialist and diagnosed. I was constantly told it was all in my head.

      The EMG/NCV testing would…test for axon damage? Do you know of any facilities around the VA-TN-NC border area that would be recommended to do those tests?

    • Anonymous
      February 18, 2011 at 2:19 am

      I was just talking to a friend of mine about what I need for my cidp- but don’t have it. One of the things we discussed was these ugly afo’s. I don’t want to sound ungrateful as they really do work and I am able to do so much more with them. Even though I am soon going to be 53, I still like to look my best and these hard, plastic afo’s don’t do me any favors in that department. As far as what you could do to help get out of these afo’s: We need to build muscle. How much nerve damage is in your ankles and feet. With the advice of your P.T., you should be conditioning and strengthening your ankles and feet. Use pieces of theraband when your sitting down. I like the weights that you can velcro around your ankles. I’m going to be trying E-Stim and Anodyne therapy soon. Good luck!!!

    • Anonymous
      February 18, 2011 at 8:57 am

      If you can get to a snowy ski mtn… most of them have adaptive snowsports programs with scholarships..

      In ski boots I have no foot drop! The boot holds my foot at a stiff angle and with my ski coach I have learned to strengthen my lower legs and feet signifigantly while feeling more normal and having fun! My walking is much improved by the exercise I get while skiing. I also find walking with snowshoes makes me more stable and is a good form or exercise.

      Waterskiing works as well in the warm weather and it especially helps to be involved in an adaptive program and have the right kind of coaching and equipment.

      Swimming and water walking helps too. I have a very hard time walking forward in the pool, but I’m much better at backwards and sideways crossover stepping. I practice all 3 patterns in the pool and also blend them with turns. If I start to slip or tip, the water is there to catch me. Being in the pool is also a great stress reliever.

      Physical therapy is good, and helpful too. Look for a physical therapist or OT who can help you transfer exercises and skills to regular activities instead of a series of “PT exercises”.

      I hope all this helps, or at least gets you thinking about what things you like to do, and how you may be able to modify them to keep in the game.

      I never wore AFO’s, but have modified my activity and my footwear to take care of my needs. IE: hiking boots with crutches and or trecking poles. Ski boots, snowshoes, stiff soled shoes, water exercise. Generally I do ok, though I have had a few fabulous trips and bruises, and I broke a couple of bones in my left foot last summer.

      I have also learned to be very conscious about moving when things get rough. I know for some others this doesn’t work, but if you have some movement on your own some of the time, then you can start working without the AFO’s some and use them when you just have to move yet the muscles are fatigued and nerve innervation limited.

    • Anonymous
      February 18, 2011 at 3:50 pm

      Building muscle is difficult. It takes a lot of time, although I am only 20 I feel like ittakes too much time. I am impatient and a part of the “microwave generation” that wants results now. I know that is very unreasonable though.

      I do a couple of exercise every night before bed to try and build a little muscle along with going to the gym and working my whole body when I have time around college.

      I had not thought about skiing before since I have never been to a ski resort before, but you mentioned work boots helping support your feet. I know right before I was diagnosed my parents give me a pair of work boots and I wore them non stop until the doctor give me AFOs and they wouldn’t fit in the boots so i had give up them. Do you think work boots alone would help hold my foot in place?

      Also, any other types of footwear that I may want to check into? I could get a pair of skis and wear them everywhere haha.

    • Anonymous
      February 18, 2011 at 3:54 pm

      Let me know exactly what they do with the e-stim and anodyne therapy and how that works for you. I haven’t done much research on this in a couple of years and the medical world is ever changing. I actually just found this site because for extra credit in a psychology class I have to write a 6=8 page paper and do an 8-10 presentation on the psychological affects of a disorder, so I chose one I was most familiar with. I haven’t really delved into the psych side of it, because of all of the new information I am finding interests me more.