Yep that was what was making me upset so much, the hoping always ruined by new symptoms. I have found closure now after 7 years of PN and what a rough journey it has been.
I have gone from being very suicidle for a number of years to completing in the last 14 days a criss cross journey across Thailand and parts of Malaysia by Rail using sleeper carriages and lugging a heavy bag that also contained my CPAP machine and battery, yes i have sleep apnea as well!

With acceptance comes a new chapter of life where the spreading of the disease becomes a minor annoyance rather than a complete focus at the expense of everything else.

Here is the deal, when I travel I hardly notice the pain at all and the excerise really does wonders for minimising the pain.

Like others I play video games except I focus on a home flight simulator that keeps my mind active and Im busy for up 12 hours during simulated flight in a Boeing 747

Remaining idle and focusing on the pain is a fast way to an early grave so I try my best to avoid that