My Neurosurgeon said to tell it like this-People can relate to it.

Everyone has heard of Muscular dystrophy (dystrophy meaning malfunction)
Well I have Nerve Dystrophy- a malfunction of the Nervous System
You can see muscular dystrophy, but for me one of the hardest things is that you cannot see my problems some of the time.
This has worked for me for 2 years-Hope it helps you-Carol