Paula
You know how I am symptomatically, as I do you. We do have to make some noise or we will be left behind! I have had this stuff 18 years - had experimental brain surgery - talked about clinical trials all over the place, and been told "Five more years to a cure" for at least 15 years!
What worries me is what will happen to research funding if health care is completely overhauled? I'm not talking anything political here. I mean health care cannot possibly go like it has been for the last 4-5 years. NIH has actually been receiving MORE funding for research, but with the economy like it is, the costs are higher and we have to compete.
There - I said it "we have to compete" for the dollars. Tell me if you don't agree. Because money is so tight, the blockbuster drugs and therapies are what gets the button pushed for reward. PD has been on the back burner for 40 years because dopamine replacement works so well. Well, that's a lie! The side effects from long-term therapy is worse than the disease in my opinion! I am so dyskinetic and have so much pain, and anxiety and insomnia. Did I say crazy, too? Well, that's where I am headed. My quality o f life (QOL) will start declining at a major fast speed as I enter the 60's. (shiver!)
We have to professionally make sponsors and big pharma, and researchers know how much we suffer - how they can make mega bucks when the 80 million baby boomers hit the market. Dopamine ala carte won't get it!
Jeez, I am rambling! And my typing is going fast. Talk to me readers! What can we put our heads together and do? Yes, we need trial participants, and Fox and PDF and others are working so well with us and us with them to spread the word. But where will the incentive come for new trials?
Did anybody see the Early Morning CBS News today (Friday the 13th)?
http://www.cbsnews.com/video/watch/?...ag=mncol;lst;1
I hope that link works. It's a British study singing the praises of gene therapy. Watch it and tell me how long will it be before our FDA approves it? Will iti be like Duodopa? Been used in Europe for nearly a decade and it's still not approved in the US!
EEK! Paula, you opened the flooding dike! I'll stop now and you talk to me forumites.
Peg (holdiingn on but fading fast)