In August, 2000, I allowed experimental brain surgery to be done on me. Although only six people were enrolled in the Phase I (Safety), I felt I needed to do this. Of course I had only begun to learn about the drug approval process and how risky it was to do what I did. But I do not regret it.

Four years after the first cohort of six had surgery, a 48% improvemennt was holding. The sponsor had also obtained fast-track aproval from the FDA.
I thought we had found the cure. Then on July 8, 2008, after 72+ people had the same surgery and half with a sham (fake) surgery control, the trial stats failed to meet its endpoints, and the trial was halted. I still hung onto hope and still do. I dont think that the trial I was in (called Spheramine and later the STEPS trial) was the cure, but we learn from failures, too.

I want to share what I wrote in my online journal about how I decided to join in such a trial. Read it, then consider during Parkinson Awareness Month (April) if you mighht feel the same. We have everything to gain and everything to lose, but also nothing to either gain or lose if you dont try.


Date:
05/23/00
Notes

Soooo tired tonight, but just wanted all of you to know that I am an addict. I check out this site as often as I do my own e-mail. It's a place for "people" first (as I said in journal entry last time; and it's for Parkinson's "people" next.

Don't ever give up - hope is the one thing to which we must cling~ Just when I was about to give up one day, the strangest thing happened.I had been out running around and parked in the driveway. Then I literally "fell" out of the car and lumbered my way into the kitchen via the back door. My legs felt like jello and the remaainder of my body was kinda "doing its own thing."

I sat down (excuse me I flopped down) in my favorite chair that reclines. I was so give out and in slow motion that I couldn't even make it recline! So I just sat there - letting life breathe back into my body.

I dozed off enough to regain a micro-chip of energy, which I used to retrieve my cordless phone from the bedroom. The bed was too inviting! I spilled myself crossways onto the bed and finally managed to get on my back. Then I punched in all the necessary codes to listen to my phone messages. That's when it happened.

There was a message from a research nurse at a PD center of excellence asking me if I would be interested in participating in an experimental study. Oh yeah - probably a brain transplant or something. I saved the message.

I had nearly fotten about the saved message until the next day. I guess I could at least return the call. An R.N. answered and told me a movement specialist I had seen had referred my name to her. She gave a brief overview of the stereotactic procedure (the halo and drill show) and said she would be mailing info to me.

Life with PD went on (as it does), and my neuro started me on Comtan to help make my other meds more effective. It immediately started working. I had more "on" time and was flying high. As has been the case with me, however, after 6 months to 1 year with my meds, the efficacy wears down. And then the info on the research project arrived in the mail.

After reading the 10-page document, I sat down in the same recliner I had fallen into days ago and cried. Really cried! This sounded too good to be true! No cost - little risk - no ethical issues -a 90% success rate thus far, and the promise of no PD (if it worked)! It claims, in fact, to reverse some of the damage done by PD.

The catch? The surgery had never been done on humans - only primates (NOW I knew why they contacted me! My genetic code and primates must be very similar! LOL)

I've checked it out and can find no loopholes thus far. And yes, I'm willing to pay the sacrificial price if it means a possible cure for someone else. I will hopefully receive a call for a screening appointment in late summer. And the screening is very extensive - my prayer is that I will pass screening as I have other health issues. If I pass, I could POSSIBLY be the second human to have this procedure done.

I may sound clandestine about all this, because I don't know how much I should be telling. And I definitely do not want to do anything to deter my number getting called! So bear with me - I will share it ALL when I know what I can share.

Lift your glasses now (clink!) "TO THE CURE!"
Peggy