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Old 12-12-2009, 07:14 PM
lindylanka lindylanka is offline
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Join Date: Sep 2006
Posts: 1,271
15 yr Member
lindylanka lindylanka is offline
Senior Member
 
Join Date: Sep 2006
Posts: 1,271
15 yr Member
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the bigger issue is how do you show a statistical significant improvement in early stage pd'ers?

I'd never see my self as any kind of scientist, but even my non-scientific mind has wondered a lot over the years about treatments that are aimed at being neuroprotective in any way - what are the predictors of the future.... and how do you measure them, and what about the ....... placebo effect, and then again in early stage how do you have any indication of rate of progression, so what exactly are you measuring, are you even sure that tremor or that stiffness IS pd, and what are the symptoms you are trying to deal with - and exactly at what point do you designate any stage as progression, as far as I can see most of it is arbitrary and based on subjective observation.....i could go on but won't, as i said i am not a scientist, but logic and ethics are something i am very interested in and a lot of this does not seem to fit into those criteria, only money and some more please........... for goodness sake half the time they do not even know whether or not they are actually seeing pd, and it can take them years to make up their minds........... it all seems like singing in the wind ........the money is made on our hope, and something needs to give, they need to hear us because we are more than the molecules that make us, and there are those among us who need to be cared about now, and listened to.

i am feeling mad about things too, recently saw a film about dementia, you could easily spot the different types, and the difference good care and fewer drugs can make to QoL for elders, they are in this too, and when a figure of less than 1% of PwP volunteer for trials, (apologies Jean, please take it as i mean, you are right to say the US situation) i cannot help but think of those around the world who never even get a diagnosis, and those who do, but never get a simple medication that will help, and where is the 1% there, in the places where people are desperate, because they are too old, too poor, too uneducated, or too much in the wrong place. Nobody is talking about QoL for all - everyone, dealing with every disease entity is looking for a cure, and it is my belief that very few are looking for it, they are too busy setting their corporate agendas....... on the other hand maybe they will just look for older early stage.......which will go right against the global projections for pd increase in the near future.... sorry for the cynicism, tonight it feels a good antidote to unrealistic hope....
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