Reply #5: Full disclosure: I have talked to Rusty on several occasions.

[EFerrari]

And that was after nearly a decade of trying and trying and fighting to get care for Doug.

WE were much, much more lucky than the Yates family. And we could have been them.

There is a kind of shock + exhaustion that sets in, when you're dealing with this every day, for days, weeks and years.

When you call and call and call the docs and get little or nothing in return. When no one bothers to give you specifics like: when will this medication kick in? how do I know if it's failing? what can I expect? how do I learn to predict a problem? how do I talk to the rest of the family? who else is going throught this?

Our current national strategy is all about making the problem "go away" at any cost. At any cost.