I thank you all. I was diagnosed in 2004; have been dancing ever since, knew nothing much. I even registered here at one time and someone sent me a poem. But I went back to music and the forest. Deliberate ignorance, perhaps. Sometimes happier knowing little.
Now it's 2009 and I find out about this. Maybe because I live on a farm on a back road in Quebec, don't get to town all that much, and most of our media is in French and this never got translated. And I have always been very good at ignoring the big bad world out there. But I do know quite a few PWP, and most of them never heard of this either. Wow!
That sweet 70 year old woman in the waiting room did me a great service. She handed me photocopies of articles, and she told me about enough to make me angry. I think it is important that the experienced people hand the history on down to the newbies, as just happened to me. There are things that must not be forgotten. Their are memories that must be preserved, and taught to others. I consider the ones who survived Amgen to be real heroes.
Are the volunteers of that group still in touch, still being tracked in some way?
Well, I better go have a beer. This has been an intense day.
But I think this is powerful: in Quebec, and in how many other places, there are People With Parkinson's who lived thousands of miles away from the Amgen outrage, and years later it is the story at the center of what they know about PD. That 70 year woman came at me hard to make sure I knew the story, and she said the story continues to spread - and it must not be forgotten. She was teaching the story in the hospital waiting room - thousands of miles away and years after the event, about people she did not know; but she would judge people's true position or true beliefs based on how they respond to that controversy. As she said, there is no controversy - it was wrong.
Now I really need a drink.