Originally Posted by ElaineD

Hi NeuroTalk Support Group:

Four years ago I was diagnosed with profound peripheral neuropathy. I had so many problems going on I did not KNOW I had it until I begin piecing everything together.

Recently I was retested by an outstanding Duke neurologist. The tests results were the same as they were four years ago.

I said, 'well at least it hasn't gotten any worse." And he said "It cannot get worse. When the nerves make NO RESPONSE, they can't do worse, they can't make less than no response."

I was dumfounded. And I realized that I still have not accepted my neuropathy, after all these years. I still think I can overcome it, that I can somehow get better through my own efforts.

Of course, I haven't. And if I've been thinking I could do it, then I have been feeling like I have been failing to try hard enough.

Today is the first time I realized that if I go to the pool and exercise, and sometimes exercise in the gym on the machines, I'm doing the BEST I CAN.

I don't walk with a walker or with a cane. When I go out, I immediately sit down. I can't stand for any time, or walk any distance. At the mall, I wait while others shop. At museums I sit while others look at the art. I may visit a few galleries, but I sit down between each effort.

My only real outside shopping is at the grocery store, where I have the best walker in the world: the shopping cart!

If I do some grocery shopping, and go to a book group meeting, I have to rest for the entire day. I have other conditions: immune mediated. Both auto immune conditions and an immune deficiency. So I tire very easily, and of course any movement takes enormous effort and concentration.

I want to hear from others who have this condition. How do you manage the expectations of other people?

I also have many episodes of great fear, because the messages from my legs to my brain travel so fast, I am already afraid before I realize that I've just stepped on an acorn! And if someone comes up behind me when I'm standing, I am frightened, my perception is all scrambled. I cannot back up, walk around things, walk sideways, or turn quickly.

What do you do to make your life better? Should I be using a cane? It just seems like another thing to handle and trip over!

Hugs, Elaine