Quote:
Paula
No one, and I mean no one, understands this illness like a patient does. And no one, will watch out for you like a patient can.
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Quote:
Greg
Is this why we have (6?) major Parkinson organizations in this country and they don't talk or share information between themselves?
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Quote:
Everett
We, however, are generalists. There is both power and weakness there, too. With a little effort to educate ourselves, we have the ability to take a big picture approach and use those databases and libraries in a new way. We don't have laboratories and we can only experiment on ourselves. But we CAN look across the disciplines in search of patterns that are only visible from that vantage point.
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And finally Everett
Give me a hundred such Parkies and I think a cure could be found.
Whenever I see some names I invariably know that the writing will be superior to any that I can contribute, fact.
But some of the remarks leave me feeling like the quote of Michaels and I wonder if that is the general feeling amongst you all and I have just not read into.
Then I wonder if I have by now just come to accept the comments made by some as just vacuous. Words floating on wind.
So you honestly feel that the ones who do not have Parkinson's [such as myself] really don't give a damn. I hope not but the comments made are so as to make me wonder why I ever came here or stayed here.
I have I guess for want of a better word developed Lymphoma and there is no cure only a waiting period as yet not known for it to travel it's ultimate course. Should I leave here and go to a cancer site or stick to my desire to find a course of treatment or cure for Parkinson's.
If i do this it will not suit me well at all. I don't want to develop that one sided attitude that I can alter or discover for myself a cure designed for me.
Your problem is not one of participation it is one of isolation. You have all of these groups and all are soliciting monies and offering services of one type or another and all think they are the cats meow.
It is no wonder Parkinson's had to wait till MJF was ready to go public with his diagnosis. But unless you are willing to accept under more gracious language anyone who wants to help in this cause then you had better start praying that there is another well known and liked celebrity waiting to come out.
I for one don't think any of these groups you are all touting have a chance in H of doing anything besides the Fox Foundation except rant on about how good they are and what they want to acheive.
I have heard this long before most of you were born and it hasn't worked any wonders that know of as yet.
But one thing I do know is if you don't get John and Jane Q Public involved and caring enough to contribut the cash needed then it is all for nothing.
You are only going to do this when you begin to take into your inner sanctum those who have Amyotropic Lateral Sclerosis, Alzheimers and any neurological disease that can benefit from the latest information and research going on.
You always talk about the numbers of people who have died or have Hiv. Well those numbers are going down and while my granson died from Aids he believed as I have just stated.
Join together and get the numbers or keep fighting the odds and take your chances.
Your all smart people here and if you can talk to and argue your points with the politicians and researchers then organize your own side of this fence. Put MJF on the side he now occupies as well as anyone can and set yourself up on the other to get the troops on board.
Hell a veritable united nations of diseasees and conditions united in the search for the cure of neurological diseases and conditions of which Parkinson's is one only one.
With much respect for what you do and as well for what you could do
Thelma
UNITED WE WILL STAND ...BUT DIVIDED WE WILL SURELY FALL