Clarification
 

I wrote above:
"....whispered if mentioned at all - a kind of urban legend whispered in the hospital waiting room: "Is it true what they say?" "What? What do they say?" "About drilling holes in people, into their heads, and then just letting them suffer." "Jimmy, Jimmy, now who tells your those stories? Don't be afraid, it's just your regular check-up." "They won't do that to me, will they?" Whispering. Taboo subject...."

Clarification: It was not the general hospital waiting room, it was the waiting room at a neurological department specialized in PD. I doubt that the story would be told in a general hospital. The "Jimmy" in question is JimmyBear, who read out loud the warnings on a Seligiline container in my Chapter 8 - they took away his driver's licence so sometimes I drive him to his medical appointments. He is very intelligent but is very nervous about medical procedures. The story of Amgen circulates from patient to patient - by the time it gets up here to Quebec, the name "Amgen" is forgotten and it is a strange incomplete story that goes around in small groups of PWP. JimmyBear did not know, and still does not really believe, that they were volunteers. He was genuinely afraid when he asked, "They won't do that to me, will they?" He thought they just might grab him and do it to him. Or eventually they do it to everyone. He is often not sure if has choices.
That is why it would be much better if the Parkinson's People had complete information about what was done. As it is now, it is a whispered taboo subject that is genuinely frightening to some PWP who are not at all sure who is in charge of their fate - JimmyBear, for example, was afraid that they were trying to starve him to death when he read the list of forbidden food in the Selegilene warning- "do not eat meat, fish, chicken, most vegetables, etc. etc." He kept asking, for weeks, "What can I eat?" I told him he could eat insects, hay, and the bark of trees. Sounds cruel of me, but it works with JimmyBear when I take him a bit further into the absurdity of the situation and make him laugh. He complained that he was told not to eat chocolate so I bought him one of those huge Toblerone chocolate bars and double-dared him to share it with me.
Bits and pieces of information about the Amgen horror are worse for people than knowing the whole dreadful story.. and all the JimmyBears (and there are thousands) will know that they don't have to whisper any more. We can all ask right out loud: "They aren't going to do that to me, are they?" Followed by an explanation of the Litmus Test. And JimmyBear can not only ask that question out loud in the waiting room, he can also ask the doctor, the nurse, other PWP - or the "general population" for that matter.
We are not the ones who have to whisper.

4 years ago, Paula taught the band to play
 

Bumping up.
As Reverette 123 points out here: http://neurotalk.psychcentral.com/sh...883#post977883
the researchers are slowly getting to where the citizen scientists were years ago


It was four years ago today,
Paula taught the band to play
They've been going in and out of style
But they're guaranteed to raise a smile
So may I introduce to you
The act you've known for all these years
The Parkinson’s Lonely Hearts Club Band

For a recent review see:

"Parkinson's disease subtypes: lost in translation"
Marras C., Lang A.
J Neurol Neurosurg Psychiatry2013;84:409-415 doi:10.1136/jnnp-2012-303455
http://jnnp.bmj.com/content/84/4/409.full

John

what about the other 80-90 percent
 

Ugh, lost my post.

In a nutshell, I now find this research ludicrous. Here is why. In a 2009 MJFF funded grant update, researchers report that of roughly 500 participants resulted in 10 being tremor dominant and 50 PIGD with 3/4 of them (that is over 300 peeps) being "mixed type". Am I missing the point? It is not like we have vastly different treatment options.

https://www.michaeljfox.org/foundati...p?grant_id=299

IMO, we should be looking at more symptoms and seeing if any clusters closely conform to genetic variant (18 and counting)phenotypes of PD. Oh no, this won't happen because it would likely result in finding that many more younger onset patients have a clear genetic link. Nothing can be perturbed in the myths of PD. That would mean they can no longer hide behind the claim that there is an idiopathic PD with one common cause. It is handy for them to tell us that only 3-5% of PD is inherited form. My contention is if they do not routinely test young onset people for at least a battery of 3-7 of the most common variants, of course that number will fallaciously continue to be low. Not to mention skew the research pool by mixing genetic PD with idiopathic. This could totally sway outcomes.

Laura