After my first, disturbing visit to the doctor, I spent the following months reading and researching. The more I learned, and the more time that went by without my world coming to an end, the less disturbed I became. Parkinson’s is different for everyone who lives with it. Patients progress at different rates and my tremor was not getting any worse. I felt fine. Life went on just as it always had.
I eventually came across information about a clinical trial getting started in Cleveland. Sponsored by The Michael J. Fox Foundation, “the Parkinson’s Progression Marker Initiative, or PPMI, is a worldwide study “using advanced imaging, biologic sampling and clinical and behavioral assessments to identify biomarkers of Parkinson’s disease progression.”* There were only a few sites located in the United States that were participating. One of those was the Cleveland Clinic, located about 40 miles from my home. They were looking for newly diagnosed Parkinson’s patients who were not yet taking any Parkinson’s medications. Because I had resisted taking any medications I would likely be an ideal candidate. Without giving it much thought, I filled out the on-line application.
I was soon called to the Cleveland Clinic for a basic assessment to see if I qualified for the study. The research coordinator explained the parameters of the study to me. It was daunting. A five year commitment involving repeated tests and not simple ones. In addition to regular mental assessments (questionaires about health and lifestyle, puzzles and word games) I would have to give blood and urine samples, have hour long MRI’s of my brain, and an annual lumbar puncture. In addition, I would be given an annual DaTscan, a new test that measured dopamine loss in the brain which is indicative of Parkinson’s Disease. The Clinic neurologist gave me the same examination that I’d been given by my first doctor the year before but this doctor was much more compassionate and understanding. A tremor was still my only noticeable symptom.
I went home to think about whether or not I was prepared to commit to such an overwhelming project.
I spent a few days listing in my head all of the pros and cons. If I chose to do this, the commitment would continue for five years. The testing done on me would be difficult. I wasn’t worried about having claustrophobia, but lying flat with my head in an MRI machine for an hour and doing the same for the DaTscan would be hard on my back. The thought of having one lumbar puncture was scary enough. But knowing I would have to have five of them–one every year– was more than I wanted to think about. And all of the nuclear imaging and the injections that went along with it, well, I didn’t know much about it but… All of that stuff couldn’t be good for a person, could it? I had always been reluctant to even allow my dentist to x-ray my teeth too often and here I was considering exposing myself to something that would require me to carry around a card in my pocket for ten day afterwards explaining to homeland security why I might be, as one person put it, “glowing in the dark.” And I would be doing this, not just once, but year after year. Was I nuts for even considering this trial?
Then there was the issue of time away from my job. I already felt guilty when I had to take time off work for a medical appointment. Because of the driving distance (an hour each way) each clinical trial visit would require me to take a full day off work.
On the other hand, although I wouldn’t receive any of the test results, I would be getting world class monitoring of my disease for free. I would have access to the best doctors without my insurance company being billed. That could only help my employer and our employee health plan that, in the days before healthcare reforms, saw premiums to rise. with every claim our employees made. I would also be paid $50-250 for each of my visits which would defer the costs of gas and parking.
The study had not met its first enrollment deadline. I thought about the requirements of the trial and I could understand why they were finding it difficult to recruit the needed number of volunteers. They needed Parkinson’s patients who were not taking medication and yet, I knew that many patients probably started medication right away and wouldn’t be eligible for the trial. At the time, there were only five trial sites in the U.S. so the number of eligible patients who lived within driving distance of a PPMI site would be even more limiting.
This was to be a potentially groundbreaking study but only if they had people willing to participate. I was an ideal candidate. And this was something I could do. Allowing researchers to harvest my genetic material and test results might someday help in finding a cure. How could I say no?Embed from Getty Images