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Living with Polyneuropathy CIDP, GBS, & CMT

Walking without losing balance


#21

Hi I would but I'm wheelchair bound. I have chest problems and get out of breath easy. So iv been knitting and reading. But i want to ski and do swimming again.


#22

I'm having balance issues because of possible nerve damage to one of the nerves involved with my vestibular system. It causes me to feel dizzy at times, have blurred vision at times, and my face and legs to shake at night. I'm seeing a DPT who specializes in vestibular function and balance to help me with exercises to overcome this disability. So far so good but it's a long road!


#23

Thank you all. Your feedback is helpful.

Alya


#24

Hello Alya
As a long term surviver I can tell you that the key to overcome this is muscle conditioning and repetitive movement. I spent hundreds of hours on a stair climber machine.in my case, for about two years, I had to concentrate on every step. Muscle memory has to be “relearned”. Also don’t try to walk around the house at night without a night light,eventually balance gets better, but it will become more dependant on a visual reference

Hope that this will help
Best of luck with your recovery


#25

Hi Charles! As a long term survivor, do you still work on things? I'm a year and a half out and find that I'm working harder than ever on recovering. My Physical Therapist said the reason why nighttime can be so hard is because you shut your eyes and don't have the visual reference to rely on. Totally makes sense now. I'm working on strengthening the visual part with exercises and it's helping so much! He says it will get better as you give your brain other signals to rely on besides only the damaged nerves as they continue to heal. This has been such a tough road! I just wonder what you still have going on because I hear recovery and I have recovered in many areas but still struggle with fatigue and strange nerve activity and limitations.

And Alya that difficulty I had looking around while I was trying to walk has improved tremendously. It was so weird though and made getting around that much harder. Good luck to you and your healing!


#26

Hello!

I hate to be the bearer of bad news, but those ghost sensations you are having, welcome to your new state of normal. You get used to it but it doesn’t go away. After 20 years I still have them.

And yes, after 20 years I’m still trying to keep my legs strong. Exercise and more exercise. And good nutrition. Nerve tissue does regenerate but it is very slow. If you play a sport like tennis or basketball I strongly recommend getting back into it,slowly at first. Remember that you are relearning how to make your muscles move using different neurological pathways.

The key is to always keep pushing your limits.

Keep me posted on your progress and I’ll be glad to let you know what worked for me.
Good luck with your recovery
Charles


#27

I started out in a similar situation, my therapist recommended yoga. Yoga doesn’t have to be any complex pose to help. Do what you can and keep building on what you are doing. I started with simply standing and deep breathing, it helped me gain confidence before moving to other simple poses. Keep something nearby to help you balance at first if you need to.


#28

Only time will help. For at least six months I used a cane and had to hold onto someone to walk. It seemed every time I turned around, I was on my face, needing major help to get up. By the grace of God, I didn't break anything. Gradually the legs got stronger; I could walk my own dog. Still tired easily till lately. My hands and arms continue weak. Frustrated!


#29

Hello Alya, I am 16 months out from diagnosis now and continue to learn more about recovery all the time. My therapist suggested yoga, it doesn’t have to be anything complex. Yoga tends to do 2 things, assist with increasing your core strength which is important in balance, and help you (re)learn to balance in different positions. My therapist described it like an infant; he actually started with having me learning to roll over without using my legs as leverage. We gradually worked to getting on my knees and so forth, just like a baby learns to be mobile. The yoga helped me build my core to do these activities. As I have improved, I now work on keeping my balance while challenging my body in different ways. For example, I walk backwards on a treadmill, I use resistance in a pool with my arms in an “L” shape (causing unusual balance needs), I also walk sideways in the pool. The pool is nice because it’s pretty hard to fall, and if you do, you won’t get hurt :). The pool also provides resistance with every movement, unlike lifting weights. Keep working, know it takes a long time, and keep thinking positive thoughts! Best wishes to you.