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Why? So many posts here on our forum, so many! Posts of desperation, posts of late night sadness. The awful aloneness the fear of a loved one slipping away and being powerless to even ease the suffering let alone stop it. Over these years so many more People come to the forum for guidance, for information, for understanding..........that's what we're here for and I've been here for some years now. I am I guess if there is such a thing, I'm a "lucky" one with Parkinson's Disease. Mine has been a slow progression......that said it has never the less progressed. Over the years I've been doggedly pleading to all who'll listen to educate themselves and others about this disease. I've stressed the fact funding is very lopsided, I've stressed the fact that yes, Parkinson's Disease does kill you. What brought about this post? I was looking through my favorites list checking to see if the links still worked and ran across this article.|
http://www.actupny.org/alert/2020:html I've cut and pasted a small bit below;
STOSSEL: (Voiceover) We all do. But what surprised us, and what the AIDS and breast cancer lobbies may not want you to know, is that among killer diseases, breast cancer and AIDS arenít even near the top of the list. Breast cancer is eighth, AIDS 17th. Yet AIDS, with its $1.8 billion NIH budget, gets the most money. The number-one killer, heart disease, last year got half a billion dollars less. Per patient, the disparities are even greater. Last year AIDS got $2,400 per patient from NIH, breast cancer $230, heart disease just $108. Parkinsonís: $78. And diabetes, which last year killed more people than AIDS and breast cancer combined, just $28. Congressman Ernest Istook has been trying to even out the research grants, without success.
It's worth the read !
Like many, like Joan Samuelson, (who btw was the driving force in founding PAN), a cure in 10 or 20 years will be too late for me also. (like most here on the forum). We need help! Yes we need help now but also for the future. What we need to do is to stop the steady parade of new patients! To stop the steady flow of letters of condolences to friends and families! For the twenty five years past and this the twenty sixth year of battling this disease I've seen it all just about. The snake oils the claims of cures or protective qualities, the claims of slowing the progression? I said just about because I haven't seen a drop off of new cases. I haven't seen a decline of deaths from this supposedly to some non-lethal disease. I've had too many friends pass and leave stunned grieving loved ones behind to buy into any misinformation of non-lethality of Parkinson's Disease!
Don't get me wrong I'm not ready to go anywhere yet, but I wonder? I wonder if Whomever fills my spot, takes up the banner and carries on this fight.............this is the scary part Folks! I wonder if after another twenty years or so that they're in the trenches....will they be saying the same thing? I hope and pray not!
Take care, best of luck and hang in there!