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Old 05-10-2011, 10:24 AM
Bob Dawson Bob Dawson is offline
Senior Member
 
Join Date: Dec 2008
Posts: 1,135
15 yr Member
Bob Dawson Bob Dawson is offline
Senior Member
 
Join Date: Dec 2008
Posts: 1,135
15 yr Member
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Quote:
Originally Posted by indigogo View Post
Paula - I agree with you. I think some foundation / organization money would be much better spent if it was diverted to direct services.
And Paula asked, "Do we really need to spend money on this?"

A big chunk of the failure of the industry that grew around our illness is right in that sentence from Paula.
I am not at all sure of this statistic, but someone told me there are 8,000 scientific studies of Parkinson's every year - about 5,000 in the USA and 3000 in the rest of the world.
So we know about PWP and chocolate. And the facial expressions of PWP. And the tinest variations of taking the same old pills.
There is nobody to say "Well, how about we try to cure the disease" or "Maybe scientists should work together rather than hiding their medical research from each other" or "how about we locate these suffering people and make sure that they are not sitting alone trembling with pain."
Or, "In addition to a doctor's requirement that they take these pills, there should be an equal requirement that they take some sort of physical - mental - spiritual - emotional - life embracing stuff to do, so we fade away with dignity and human kindness and thereby set an example to all others who will also have to die.
I had a friend who died alone in the forest, with late stage PD and I was the one who found him. He lived alone at the end of a dirt road. He saw a doctor about 15 minutes twice a year. Other than that, he was on his own. Two or 3 of us local PWP used to go visit him, but other than that he had no family, no friends; the neighbours viewed him with suspicion. We struggled with guilt about how we did not do enough for him. But we, suffering from the same disease, seemed to be the only ones who even knew he existed.
My nasty attitude toward the whole Parkinson's Industry dates from that day.
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"Thanks for this!" says:
Conductor71 (05-10-2011), lindylanka (05-12-2011)