.......At times, it is good and does both US good but for PR on behalf of all of us with various neuropathies to go out and speak to as many folks, relatives, friends as we can about what we have and to increase understanding about it and the need for more research. The more we do it, the better WE get at it.
Who knows which one of us will be testifying before Congress about it in five years? It could be you.....!..........

The most frustrating thing is that 'they' don't seem to get it,
no matter how hard we try.
Explaining seems to always go in other directions. The 'others' the 'normals' never
seem to be able to grasp it. They digress, try to compare it to their own experience or to 'Aunt Nettie's' varicose veins. They don't stay still, mentally, long enough to grasp the fact that it is nothing like varicose veins. They start on a long explanation of their medical problems and discount what I have said.
I'm so frustrated with trying to even get my wife, an RN who has dealt with AIDS patients who have had PN, to not only understand- but to try to have her remember that I cannot do things as I used to. Walking too fast & leaving me behind. Expecting me to do physical things that I cannot....and on...and on...and......!!
I've taken the attitude when asked:

'How are ya? ..............."
".....Doing OK !! As well as can be expected ! Not to bad today !!"

"Can you help me with this?
".... I don't think so... my balance is off, can't stand on that ladder anymore....
better get the jar opener, hon...my hands are too weak now.... that trash is too heavy for me to lift anymore, better separate it into 2 bags if you want me to do it"

On a daily basis !!

They just don't get it !