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To: INTERNET:[log in to unmask] In early 1995 my wife and I visited the Neuroscience Institute at Good Samaritan hospital in Los Angeles. It is an older hospital but well maintained, about 1 mile west of downtown with about 400 beds. We met with D. "Skip" Jacques, MD, Oleg Kopyov, MD, PhD and the rest of the staff, both medical and administrative. Over the course of about 9 months I was video taped 3 times and was evaluated other ways. I was accepted into the implant program in mid-1995. During this period I attended at a support group meeting with implant, pallidotomy and thalamotomy patients attending. Despite the openness of the implant patients and staff attending, I did not understand that PD just doesn't stop when an implant is completed. Surgery was scheduled for September, but was postponed several times. We were visiting Phoenix in early October, 1995, when I received "the call" to go back to LA for surgery. I am a bit unclear about specific dates; however, implant surgery was done on 9 October 1995. Surgery took about 3 hours and the number of graphs done bilaterally was not disclosed to keep bias away from the patients. I did receive along with the fetal tissue, "minced" sural nerve (found in the ankle area). I understand that NGF is not yet an approved med by the FDA, so sural nerve, which is rich in NGF was used. Two others (males) received implants within a day or two of my implant. We have kept in touch since then. One cohort while recovering from implant surgery had knee surgery so that he wouldn't miss hunting season (he is now in Alaska). I have spoken with 4 or 5 other cohorts and find in general my experiences were not unique. Medical insurance, (I am covered by my wife's employer) would not cover the procedure as it is experimental. I know first hand of only 1 implant patient who was able to have his medical insurance (a trust decides each case) cover the surgery. Anecdotally, I have heard of one other case that medical insurance covered. The immediate 2 months after surgery were a dream, everything was wonderful; however in mid-December it "hit the fan". Meds were 6.5 25/100 Sinemet and 3mg Artane daily. I think I had every PD symptom ranging from very, very severe depression and paranoia, to believe it or not, unilateral tremor and unilateral dyskinesia--too little and too much Sinemet at the same time. In addition I seemed to demonstrate every side effect of Sinemet noted in the PDR. I had a siege of falling recently and had 27 stitches in my forehead after visiting the ER. It is exciting to awaken each day and ponder which PD symptoms will visit (revisit?) me and which will take a vacation. Speaking of a vacation we recently visited family and friends on the east coast, and upon returning found I had forgotten how to walk. While I have no evidence to support it, I seem to demonstrate PD symptoms in the reverse order I noticed them prior to surgery. Earlier I discussed immunosuppression after the implant. The protocol called for implant patients to be immunosuppressed; however Dr. Kopyov's experience and studies suggested immunosuppression for cancer patients is not indicated, even though my oncologist did not think it a risk. I believe that two implant patients were in the same situation as I was, and were not immunosuppressed. On one evening in January I took my temp every 2 minutes, fearing a bout of flu and resultant rejection. I did not have my yearly flu shot as it was contra-indicated. In about April, 1996 I think I could see daylight. Psychiatric counseling helped, although I did not take antidepression medications. The neurologist added 2X.25mg Xanax to counteract anxiety and boosted Sinemet back to 8X 25/100 daily. In addition I take 1X.25mg Permax at bedtime to help falling asleep. Previous study indicated one should try to wean oneself away from Sinemet but Dr. Kopyov now thinks I should not be afraid of Sinemet. Yes, before you ask I am aware of the problems with Xanax and regularly "test" myself regarding addiction to the Xanax. The verdict is not yet in regarding my level of recovery to normalcy. Micrography has been improved and arm swing is improved. Dr. Kopyov et al published a paper of their first 22 implant patients. (Cell Transplantations, Vol. 5, No. 2, pp. 327- 337, 1996) I am not included in that paper. It was accepted for publication on 13 October 1995 almost on the day of my implant surgery. For those interested in further information, Carol Hilton at 800.841.8765 in the NPF office at NSI can provide it.