There are all kinds - and this post won't get into that ...

But my husband & I both were in a trial on Monday, and I wrote up a description of what we did.

http://www.pdplan4life.com/in-a-clinical-trial.htm

cheers!

This is very good (and useful) information, Jean. I had no idea what to expect when I signed up for the Spheramine trial (aka STEPS trial in phase II) .

As many of you know, I participated in a trial 8 years ago. The protocol was changed since Phase I participants saw such positive results. We are going to be followed for 10 years (or life). I got my call just this week reminding me it was time for my annual work-up.

The Nurse Research Coordinator for my trial is in charge of giving me information to make arrangements for each visit . I live in TN, and the facility trial base is at Emory (GA). This means we (I can take someone with me) have to either fly or drive and claim mileage, stay overnight, and have arrangements to get to and from the testing facility, and of course we have several meals to eat. Under our agreement, all expenses are paid (partner included) . I also have a thorough exam by the research study physician and have an MRI.

I think the worst part of all the finger tapping, palm turning, pull-test stuff is that I must be tested when "off," i.e. without meds for 12 hours. I sure ain't sprinting on that morning! Then I am given my regular morning dose and am tested again when I turn "on." There's a shorter neurological test that is videoed in the "off/on" modes, and all of this put together is invaluable information.

The commitment to a clinical trial should not be taken lightly. I had an experimental surgical trial, so at first visits were weekly, then bi-weekly, then monthly to quarterly, and bi-annually to annually. That may sound like a difficult commitment, but if we want better therapies and (hopefully) one day find a cure, we need to find a suitable trial and sign up.

Peg

self imposed prison -except you do not know if you have sentenced yourself
for a death sentence?
almost said yes to one - but I am sooooooooooo glad I did not
mirapex was close to being in a drug study, truly an insane asylum drug with out knowing why?

Everyone is entitled to his/her opiinion, but this is a fact.

The one drug we have depended on for 40 years is L-dopa (aka Sinemet). In spite of its side effects, it works. Had someone said what you just did 40 years ago, all PWP would be sitting in wheelchairs, drooling in the corner, and in a cataonic state.

If you don't want to be in a trial - that's your opinion, but please realize that SOMEONE has to test the drugs or treatments, or there will be no improvement in quality ofo life, nor will there ever be a cure.

Enough said. Hugs, Tena.

Peg

dear peggy,
I must speak ~~

that is not so, my great Aunt Stella Martin - she had PD,& I met her when I was just a little girl,
-she took L-Dopa, which is a different drug -then what Sinemet was no carbi dopa...
she was dxd at very young according to Stella's only living daughter who lives in Seal Beach, CA, as I called and spoke to her only 4 years ago...
-and when Stella was in her late 50's she was in a wheel chair, and her tremors were sad...
___________

the "drug studies" are quite a sham!
bigpharma has had the FDA in their back pocket for years!
what the money wants it gets...

examples are many - yet I will give you three!

ASPERTAME/ nutrasweet FDA allowd it, after the findings were changed
and real findings destroyed -
by Monsanto.
quote - Dr. Blaylock, neurosurgeon...

GDNF clinical trials - stolen lives of patients - by AMGEN
watching the GDNF court trial - was sickening!!

Cancer cure stolen, Nobel etc. would not allow Otto Warburg to write his Cancer cure book, why?

perhaps drugs are truly not cures... not good medicine at all, perhaps we live longer but most people are worse and have less quality of life...

we must research and think about what the toxic consequences / or ramifacations are to taking drugs/ for 20 yrs...


mercury inn Vaccinations...mercury in dental fillings... etc. etc. etc...

I will not be agree to your enough said, my dear peggy,
because I make my own decisions -
and I will not line up - like the sheep to slaughter...

so for you peg, you agree to all the clinical studies

and I will agree to none...unless it is a nutrtion study w/ no placebos
and no harm must be done to people.. and drug studies must be binding under
the hippocratic oath, signed by BigPharma too.

ie:
dear peggy - we are more than flesh and blood, we have souls!