Signing up for a clinical study is not an irreversible decision. Trial participants always have the right to change their mind. After agreeing to participate in the Parkinson’s Progressive Marker Initiative (PPMI) at the Cleveland Clinic I went home and spent more than a few days questioning my decision.
I found many reasons why I should get out “while the gettin’ was good.” The study required a long five-year commitment. It would require me to make 4 to 6 half and full day visits in the first year. That would cause a problem with my job. Much of the testing would be difficult. I wasn’t worried about claustrophobia, but lying flat for up to an hour in an MRI machine would be hard on my back. The thought of having one lumbar puncture was worrisome enough, but five of them? I was never a fan of needles. And then there was the nuclear imaging and the injections that went along with them. I was reluctant to even let my dentist x-ray my teeth. Was I really considering exposing my body to repeated brain imaging and radioactive injections? Studies said that it would not be harmful. But did I trust them?
PPMI was a trial for the advancement of medicine. Participants would be given a stipend, but otherwise, there was no benefit for participating. No drugs or treatments would be offered. Participants wouldn’t even be given their own test results. There seemed to be few pros and little reason for anyone to overcome the many cons and choose to participate.
But I did choose to participate. Why? Because I could.
The Michael J Fox Foundation has an excellent reputation. It was created by a man with a single mission – finding a cure. PPMI could be a potentially groundbreaking study but only if people were willing to commit. There were not many patients that met the eligibility requirements. I just happened to be one of the few ideal candidates within driving distance of one of only five trial site locations in the U.S.
We live our lives doing for ourselves and for those we love. Only rarely do we find ourselves in a position that will allow us to make a difference to humanity. This was my make a difference moment. A cure may not come fast enough to help me. But it could help generations of people in the future. For that reason, I felt an obligation to set aside my concerns. Throwing caution to the wind and trusting it would all work out, I became a “lab rat.”
Seven years later, I’m happy that I did. I’ve gained much more than I’ve given. Through PPMI I have met many dedicated, funny and friendly people. In all of my study visits, not one doctor or research worker has ever failed to thank me. I quickly got used to needles and routines and the exams have not been nearly as difficult as I imagined they would be. And I am now under the care of a doctor that I know truly cares about me.
Even more satisfying is following trial accomplishments. When the five years of the study came to an end, it had been so successful that it continued on. I signed up for an additional 3 years. The first five U.S. locations grew to be more than twenty with more sites located around the world. PPMI has made some big discoveries and it’s satisfying to know that researchers might have made those discoveries using my genetic materials and test results. The clinical trial which offered few benefits has turned out to be one of the most rewarding things I’ve ever done.
We may not find a cure today, but tomorrow looks very promising.
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