I believe I’ve mentioned that I was being considered as a clinical trial subject for a new Parkinson’s gene therapy. I’ve been very excited about helping to advance science and possibly finding some symptom relief. It’s a double blind trial, which means that some subjects receive the actual treatment during the trial period and others receive a placebo. Double blind means that neither the researchers nor the subjects know whether they’ve getting the placebo or the real thing. At the end of the trial it’s “unblinded,” and everyone learns which version they received. And if the treatment looks promising, placebo participants are offered the “real,” treatment.

The procedure consists of drilling a hole in the back of my partially shaved head and inserting the gene material which is targeted to specific regions of the brain. Whew, and apologies to all you scientists and medical professionals who are undoubtedly cringing at my layman’s description of complicated science. I’m limited in my knowledge, and therefore will now quit the explanations while I’m maybe almost ahead.

Last week I had two-day back to back appointments scheduled with the physician/researcher who is leading the study. We discussed my continuing symptoms, especially leg pain which dogs me nearly daily. My neurologist suggested that we switch medications from Sinemet to Rytary, but her request to do that was declined by the insurance company, apparently a common occurrence. In order to participate in the trial, I need to be stable on one medication for at least two months. My doctor is appealing the decision on my using Rytary; the appeal process should take a couple weeks.

Assuming approval to switch to Rytary is granted, I’ll take it for two months. If I see significant decrease in symptoms, then it means the Rytary worked, so no need for the trial and surgery. But if I remain in pain, then I can participate in the trial/surgery where I would receive either the placebo or the actual new gene therapy. Day Two of our trial discussion was tabled for now since the switch to Rytary was put on hold.

So for now, it’s wait and see from the front lines of modern medicine..

To learn more about the trial, click here or contact the study coordinator, Nisha Kabir.