It's a long story as to why the reply above is above this initial post to this thread.

If you were "educated" at the beginning of a clinical trial to not seek improvement while in a clinical trial...to not have HOPE...would you be able to remove Hope from your mind for the duration of your clinical trial, and not anticipate improvement?

If yes, why and how?

If no, why and why not?



Oliver Wendell Holmes
Beware how you take away hope from any human being.

H. Jackson Brown Jr.
Never deprive someone of hope; it might be all they have.

This may not be an answer to your question exactly, but I wish we never were even told there was such a thing as the placebo effect. It plays with our heads before the trial even starts. It confuses the participants and the results; we are forced into it by the FDA and told it can last years. It causes great anxiety and for those people who do end up experiencing it; it ruins the results and they never get a chance with the treatment.

Being somewhat tired and let's say grumpy at the moment..lol...I'll finish by saying that right now, based on the success rate so far, no one would need to tell me to not have high expectations for any clinical trial.

I realize that many many good people are working on this, but nothing less than honesty will work. We are not monkeys.

paula

I guess I'm dense (or too off). What is the question and WHERE is it, Carolyn?

Peg

In the cephalon trial, we were told that it would NOT affect our symptoms. It would not make us feel better. But clearly no hope for symptomatic relief.

My hope lay in the possibiity that the drug would slow or stop the progression of the disease. It didn't, of course.

So i was able to separate the two - to have no hope or expectation for symptomatic relief - but an ever present hope for a slowed disease progression.

i could never have left hope 'at the door.' For me, HOPE is what clinical trials are all about!

I was confused too..there is no actual poll, and it got accidentally posted out of order, so begin with stitcher's post.

But your post was so funny.....thanks for the smile.

paula

I think...hope...I made it less confusing.

The original question is back in Stichers post, with Carry's reply stuck in as a quote. That is the only way to get the posts back in order.

Confused yet?

yes thank you much, curious, you are so conscientious and helpful, we appreciate you!


paula

Awww..thank you Paula.

Hope
Placebo effect
whatever

This topic needs further discussion. Do we need to formally invite NT members for the PD board to come in ther and discuss/debate this topic?

Where are all those who usually discuss topics like this?

I know that my response to NTN was due to my seizure, which made it clear to me and anyone I told about my seizure that I did get the "real deal." I didn't need Ceregene to tell me this, although it was good to have it comfirmed.

What has happened now is that I have been here in TN for seven days at Peggy's home. Maybe it was being around Peggy. Maybe it was that we did too much, I don't know. But my PD symptoms are clearly back to square-one again.

So, I think that if I did respond to a placebo effect, it is gone for good. And I am going back on meds...darn it all!!

Now I have a question. I see my Principal Investigator soon. What questions should, or does anyone here have, that would be good to ask him. If anyone has particular questions they would like to ask Dr. Stern, I will do that...then bring the response back here.

Just confirming that this forum is open to all, as is the pipeline email list. The pipeline project focuses on clinical trials - all aspects of it from basic reserach to FDA approval, which is rare. It is different from the neurotalk group, altho there are many ways in which they overlap. The neurotalk group has offered ways to draw support and communication - to talk with multi-disciplinary professions and collect useful data. After giving it a pretty good stab, I don't see enough participation for anything to materialize at this time - Rick has contructed a wonderful, comprehensive, modified wiki. This group probably needs a few non pwp leaders.

HOPE fades with advanced pd and aging. You either make something happen or wait for someone else to do it. Patient advocates are like flashes of light that burn brightly, then burn out - in fact, there's a case to be made that this happens off and on everyday.


paula