To start, my trial coordinator wrote in an email to me that "both groups (sham and treated) showed the same improvement. They compared the "off" scores at 12 months to the pre-op scores so this would have been individual scores. I would imagine more info. would be forthcoming.”

Personally, I have a hard time with this statement, as do a few other patients.

I wonder if gene therapy has more to do with the PD and the individuals brain, and maybe the surgeon. What I mean by "with the PD" is that we all are so different...some slow to progress, some significantly disabled within a few short years of dx, some with dyskinesia, some with dystonia, some with neither of the latter two.

Is is possible that gene therapy might only be a good therapy for some, while not recommended for others. Without further study and investigation, we will never know.

To "correct" some of what Paula stated above: I had my surgery on June 18,2007. I was transferred from the ICU to regular neuro on the morning of the 19th. Upon arrival to the regular neuro floor I requested a visit to the bathroom. While there I collapsed to the floor. After "taking too long" in the bathroom the nursing person decided to check on me and found me on the floor. I requested a copy of the safety report and as of this date I do not have the copy, but I will begin to pursue it more vigorously. I was told I had a seizure...not uncommon after brain surgery...and was put on anti-seizure medication. I should have gone home on the 19th, but due to this unexpected seizure I stayed until June 28th.

A safety report is the document that is filed with a government agency detailing what happened during a given incident involving a trial patient. In my case this document would tell me that an MRI was preformed to confirm the seizure, etc. I do know that my facial swelling was very bad and I am told my seizure was due to brain swelling. (The swelling would have been caused by the surgical invasion into my brain during the insertion of the therapy. Of course, neither my trial investigator nor I every spoke of this as a possible reason for the swelling. Why? Because of this was a blinded trial. I have just guessed all these months.)

I do not remember ANYTHING from the morning of the 18th until I woke up in on the Rehab floor June 25th...I lost a whole week. Those days were an ordeal for my oldest daughter, who had to deal with home care setup, etc. I could not have a conversation of any kind...just yes or no. As Paula explained above. I would start to brush my teeth, but I couldn't figure out HOW to stop brushing. My daughter had to take the brush out of my hand. This also happened with bathing. I would begin, but I didn't know how to stop bathing, turn off the water and dry myself. Suffice it to say, it was a very scarey time for my family. I was clueless, so it was not scarey for me.

On July 3rd, both my daughter's took me back to Philadelphia to see the neurosurgeon out of great concern. I was still only able to say Yes or No to anything I was asked.

I checked back into the hospital on July 3rd. I think I can home again on July 21st, but I am not confident this is the right date. I do know I was in the hospital for a month, combining both hospitalizations. This second inpatient included I was on the regular neuro floor. Those that called me on the phone will attest to how difficult it was for me to have a conversation, but as the days passed, this skill improved. By the time of my final discharge I was able to think and act normally.

I have had not problems since that last discharge on July 21st. I did spent three months on anti-seizure meds and no driving as a precaution.

Would I do it all again...yes, I would do it all again.