In 2011 I signed on as a research patient with the Parkinson’s Progression Marker Initiaive (PPMI), at the Cleveland Clinic. Funded by the Michael J Fox Foundation, PPMI is searching for biomarkers, or any characteristics that can be measured in a person that can be tied to the disease. I would not be given any medication or treatment as part of the study but would be volunteering to give my test results and genetic materials in hopes that researchers would someday find a cure.
Previously there had been no test for Parkinson’s Disease. Its diagnosis had been strictly a doctor’s best guess based on a patient’s symptoms. But a new test, the DaTscan, had recently been developed in Europe. A DaTscan allows doctors to capture detailed pictures of the dopamine neurons in the brain. I would only be accepted as a participant in PPMI if a DaTscan proved that I had Parkinson’s disease. Although it was being used in Europe, the DaTscan had not yet been approved for use in the U.S. The Cleveland Clinic had one of only two machines in the country, being used only for the PPMI trial.
Being the good sport that he is, my husband drove me to Cleveland and we arrived early on testing day. We found our way to the basement of the Glickman building where a lab worker showed me to a small white room and placed an IV port into my arm. He gave me a cup of juice in which he had placed some kind of iodine drops to protect my thyroid. Already having had my thyroid removed this seemed like a ridiculous step in the process and in later years, workers would skip this step. But until they could check my medical records and confirm my thyroid surgery they followed the established protocol.
Following the juice drink I waited an hour to allow the thyroid protector enough time to work. Or, in my case, since I had no thyroid to protect, I sat to allow the testing schedule time to catch up with me. When my hour was up, I was injected with what I nervously refer to as the “glow in the dark” solution, a radiopharmaceutical agent that is injected into a vein and taken up by the brain’s dopamine cells. At the same time, the lab worker handed me a small business sized card that I was to carry with me for the next ten days. The purpose of the card was to explain to any Homeland Security personnel that I might encounter just why I was setting off their radioactivity detectors. I wondered once again if I was crazy for getting involved in this.
There was another two hour wait while the injection did its thing. I was given a time to return to the lab and told not to be late since there was a limited window of time in which the scan had to be taken. My husband and I took the elevator upstairs and found a place to relax and have a long lunch.
By mid-afternoon I was back in the basement lab where I was led down hallways to a darkened room and strapped onto a machine that looked much the same as a machine used for MRIs or CT scans. Because they were only scanning my brain, I was allowed to lie with my knees bent which wasn’t as hard on my back as lying perfectly flat. My head was firmly and comfortably strapped down. The test lasted about 30 minutes.
Although I didn’t and never do recieve test results, once the DaTscan was taken and analyzed I was approved for the study as a Parkinson’s Disease patient. The test had confirmed my diagnosis.Embed from Getty Images