Fiona,exactly! /IT is possible to be uncompromising without being confrontational, it is done here all the time, but here we are speaking to the converted, I believe that people here could write the handbook, so to speak that could help create that new paradigm. In everything that we do and say we are battling with an ingrained view of this disease as something that affects the old and helpless - for change to happen that view also needs to change. People were old at 60 not that long ago, in some places still that is still extreme old age. But for most people now that is not old it is middle years, and the expectation is different. I for one am fed up with waiting yet another six months to discuss the things that i need to know with the one person I come in contact with who is supposed to be the expert, and watching the years tick by........ Paula, I know you need that improvement, and you need that help, you have such a strong voice though, Greg, it is just as you say it, these are all powerful writings, and there is nothing wrong with passion. Or politics for that matter. This is not whinging, this is telling it as it is. If it was a dread disease that was affecting children in thousands families and kids would be making sure it was known, and would be able to make things happen. It is this wretched ignorance about PD that hides things, makes people indifferent. And the fact that neuros don't like telling us they don't really know what to do. Fiona, you have got it right, there is a lot that can be done, and Paula, when those things no longer help, then a breakthrough is needed, and vested inerests should be put to shame for their collusion, and for their lack of basic compassion. My son tells me fairly regularly that I should be working on making this visible, that I have the ability, and sometimes I feel shamed that it is so hard to do, that if I don't get really involved I will eventually fade into some nether existence of age and incompetence without having put up a fight. And I know that there are lots of peoople here who have fought for a very long time, and I don't want their efforts to fade, even this year there have been breakthroughs. It is not all stone walls and very short memories. I would love to see a 'book', in whatever form, that asks the right questions of the right people, and gives their answers. A book like that could help redefine what PD is, beyond its medical definition, and enlighten all sorts of things. I knew someone once who worked with very old people, with dementia, she collected words, experiences, and made a book that gets used in end of life care, by professionals, who had not been looking at or listening to what these people were saying, only looking at degrees of infirmity lack of competence. Not looking at the right things.

We do have an opportunity to do this, and are blessed with better tools than any previous generation, videos, skype, voice recorders, internet etc.....................okay,I'm done.

best wishes to all
Lindy