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Old 02-24-2010, 03:47 AM #4
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Raglet Raglet is offline
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Join Date: Jul 2008
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Raglet Raglet is offline
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Join Date: Jul 2008
Posts: 229
15 yr Member
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I have severe balance issues - basically I have lesions on my cerebellum, plus numb feet, club feet, bilateral foot drop and damage to a perhiperal nerve going to my hip. Obviously the lesions on my cerebellum were not caused by PN although they affect my balance greatly (caused by my lupus), but the rest is all caused by my PN. Actually my PN is caused by my lupus, so what the heck.

I walk like an ape basically - flexed forwards at the hips about 45 degrees. It's the only way I can remain even vaguely upright - if I stand up straight I imediately fall over backwards (as in land on a heap in the floor). So, I just have to use a bunch of aids to maintain my mobility - usually a walker, but I have a fixed frame wheelchair that I use as needed. I also wear AFO's (braces that come up to my knees) to keep my feet in position - they are very helpful, but only work if you have a foot drop. They would be pretty useless otherwise. I also have a set of crutches - sometimes they are easier to grab, especially if I am just jumping out of the car and 'running' into a shop for a bottle of milk.

I have tried extensive PT to improve my balance which was not helpful, but this is such an individual thing that it needs to be tried as many people respond well to it. It didn't work for me because I have too much motor damage (I have sensorimotor neuropathy - numbness and motor loss). The impulses just don't get through to some muscles, so I just have to work on keeping the muscles that still have innervation as strong as I can. Walking my dogs everyday (with my walker) helps this a lot, we walk for 30 - 40 minutes each evening. My one knee is starting to collapse under me which is really disappointing, as the only way to fix that would be with an above knee calliper. I am just hoping to put off the evil day as long as possible. That is actually connected with the nerve damage in my hip, as apparently the muscles in the hip help brace the knee (who knew?)

A lot of it is trial and error, working out what works for you, trying different aids if necessary and keeping your muscles as strong as you can.

best of luck with it all
raglet
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