Paula,
keep on going, as you must, and be as vocal as you are for as long as you can! You are a treasure as are all the people who push for a better future for PWP's.

I for one have no objection if those who seem to want us to look pitiable instead see that we are ------ off by being expected to lie down and take this disease. Especially those wearing the snazzy gold-plated blinkers.

I wonder if they will ever get round to using the databases to ask the real questions, from real people with real lives. Or will they just use it as another pharma tool....

I could go on at length about why I feel that the whole overview of PD needs a re-definition, but I would enter into the realms of rant, rather than ramble

I am currently fantasizing about developing an outfit on the lines of the gear they use so that men can feel what it is like to be pregnant, but for people who I would like to get to understand what it is like to walk in our shoes ............... any suggestions, both for the outfit and the people !!

Actually, I would rather this disease than the one that makes people see those with long-term conditions as pitiable - you meet much nicer people!