After my first, disturbing visit to a doctor in 2009, I spent the following months reading. The internet can be a scary place. Horror stories, myths, and outright deceptions are everywhere and cover all topics. Fortunately, I knew the importance of choosing only well-known, reliable sources. The more I learned, and the more time that went by without my world coming to an end, the less disturbed I was. Parkinson’s is different for everyone who lives with it. My tremor was not getting any worse. I was not developing new symptoms. I felt fine.I eventually came across information about a potentially groundbreaking clinical trial sponsored by The Michael J. Fox Foundation that was just getting off the ground. There were only a few participating sites in the United States. The Cleveland Clinic , less than an hour from my home, was one of them.
The Parkinson’s Progression Marker Initiative or PPMI, was a worldwide study looking for newly diagnosed Parkinson’s patients who were not yet taking any medications. Without giving it much thought, I filled out the on-line application and was immediately called to the Cleveland Clinic for an assessment.
Recruitment of patients for the new study was slow. I understood why. The requirements of the study which were explained to me were daunting. It required a five-year commitment of regular health check-ups, mental assessments, and repeated tests. Participants would give blood and urine samples and have an annual MRI. Another new test, the DaTscan, was being used in Europe but had not yet been approved for use in the United States. There were only two DaTscan machines located in the U.S. for the exclusive use of the study. Patients who didn’t live within driving distance would have to be flown to Connecticut for the scan. The scan which measures dopamine loss in the brain, takes up most of a day and requires participants to be injected with radioactive dye. For two weeks following each scan, participants would be required to carry around a medical alert card to explain to Homeland Security why they were setting off metal detectors. But even that didn’t make me as nervous as the final requirement – participants would all have an annual lumbar puncture. Yikes.
PPMI was a study to make an advancement in medicine. It did not test new drugs or treatment methods. Participants would get nothing in return except a stipend for their trouble. Participants would not even be given their own test results. The study requirements were demanding and there was little incentive to encourage recruitment.
I picked up a pen, flipped to the back of the contract that was a dozen pages long at least, and signed on the dotted line. Why I did so, well, that’s a whole other story.