I hear ya, Linda, et al replying to this thread.

And paula said: There are several indications that our health care is about to change.

Do ya think?

I explained my theory on this one in another thread, so I will link to it. http://neurotalk.psychcentral.com/thread110038.html
If you want to bring it into this thread, be my guest. Here's a synopsis of what I tried to explain in more detail elsewhere:

I believe our research community has finally realized that we have been using modes of measurement for PD research that are useless and give us no feedback as to how a therapy is working.

The reason behind my somewhat shallow theory is very deep indeed. Dopamine therapy does not wash out of our system for a minimum of 2 weeks, which can vary person to person due to what one had to eat the night before, his/her metabolic rate, body fat, if we have any other ailments requiring the use of our central nervous system, how much energy was expended prior to the testing, whether or not the patient had ample sleep, our mood, whether or not our bowels have been moving regularly, if we have been under any stress lately, what medications are stilll in our system, and don't forgoet this one - the placebo effect - i.e. how we THINK we are feeling.

In other words, and strictly my opinion, what scientists have been measuring for the last forty years is the rebound effect of having been on carbidopa/levodopa therapy, or what we call so sincerely dopaminergic therapy.

Linda, (and Jean - this would answer your question, also)- I believe the researchers are trying to redirect attention to this fact by the call for recruitment of "those who have NOT been taking dopaminergic therapy." THAT would be a much better evaluation of whatever therapy was tried. And of course, you cannot abruptly stop the dopaminergic therapy (they usually say 12 hours offo meds) with a PD patient WITH dopamine in his/her system, or the result could be lethal, resulting in Neuroleptic Malignant Syndrome.

Defined by the NINDS website as:
Neuroleptic malignant syndrome is a life-threatening, neurological disorder most often caused by an adverse reaction to neuroleptic or antipsychotic drugs. Symptoms include high fever, sweating, unstable blood pressure, stupor, muscular rigidity, and autonomic dysfunction. In most cases, the disorder develops within the first 2 weeks of treatment with the drug; however, the disorder may develop any time during the therapy period. The syndrome can also occur in people taking anti-Parkinsonism drugs known as dopaminergics if those drugs are discontinued abruptly.

Additionally, we haven't proven just how "advanced" Parkinson's looks. Are we measuring the symptoms of the disease, the side effects of the dopaminergic medications,, or the rebound effect of being off meds for at least 12 hours?

To quote paula, " They don't care about advanced parkinson patients and are very aware that the baby boomers are too expensive to maintain." I'm not sure just who "THEY" is, but there are 80 million of us babyboomers. Do you think that many making noise might get some attention? I DO!

"They" had better get to work on management of the advanced PD patient - there are 80 million (if the theory holds that 1% of the aging population gets Parkinson's, that is still 8 mil . . .. oops! corrected below. Make that 800,000 ) who are knocking on the doctors' doors as we speak.

I went to bed and sat straight up thinking - 1% of 80,000,000 is only 800,000!!! I hope I corrected this before any of you caught that! (I was an English major lol)
Peggy