First post. How to overcome AFOs.

Welcome.

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.

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!!!

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.