Parkinson's Disease

Living with Parkinson’s Disease Part 5: PPMI’s “Long” Visit

The day begins some time around 9 AM. I check in to the Mellon building and make my way to the third floor where I’m met by Jennifer, the study coordinator. Following the same routine as the “short” visit I spend two hours playing games and doing questionnaires with Jenn and I have a visit with Dr. Fernandez. I am allowed a break and I meet up with my husband for a quick lunch at a small snack bar on the first floor.

I have an early afternoon appointment for an MRI. Some people have a problem with claustrophobia when placed in the MRI or DaTscan machines. Neither test is difficult for me. They sometimes give me headphones and I listen to music or I might just use it as an opportunity to take a nap. I am always careful not to wear any metal on testing days. A technician once showed me what happens to metal objects by dropping a key in front of the machine. The magnet of the MRI machine is so strong that the key flew horizontally through the open machine and across the room, hitting the wall on the other side.

I lie down on the machine’s narrow, hard platform and the technician gives me a cushion to place under my knees. Lying with bent knees is easier on my back than lying flat. The technician straps me down to the platform and I’m slid inside the machine. The walls are so close to my body that my arms touch on both sides. The ceiling is only a couple of inches from her my face. I understand why some people might feel trapped. The closeness doesn’t bother me too much — mind over matter I guess. I close my eyes and try to relax. I come close to dozing off but the loud whirring made by the machine prevents me from sleeping. I have to lie still for a half hour. When the test is finished, the technician has to help me sit up. Despite my bent knees, lying on the hard platform for so long makes my back sore and stiff and it’s difficult for me to move.

Following the MRI, my final appointment on the “long day” is for a lumbar puncture. My very first experience with the procedure was the best despite being improvised. On my first visit, just prior to my appointment time, Jenn discovered that the technician who performs the procedure had called in sick. She panicked. If they couldn’t find someone to do my lumbar puncture I would have to come back another day, requiring me to take another day off from work.

The task of performing the procedure fell to Dr. Fernandez, the study’s director. Dr. Fernandez admitted that he’d not done one in a very long time. I lay down on the bed in our familiar study room. Dr. Fernandez and Jenn did all they could to make me comfortable. They chatted with me all the while keeping me relaxed. A very small needle is used on PPMI patients in order to reduce the pain involved. It hurts less but the procedure takes longer. Dr. Fernandez came through with flying colors. I had only minor discomfort that day.

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The second year the professional did the job underneath the x-ray machine where he could see exactly where to place the needle. Once again I had some minor discomfort and I certainly was glad to have it over with, but the procedure wasn’t unbearable. I was feeling confident that if the lumbar puncture went this smoothly every year I’d have no problem getting through the five years of the trial.

At the third year’s procedure, another doctor was using an experimental technique to do lumbar punctures and I agreed to allow him to do the procedure as a part of another clinical study. The new technique was getting rave reviews. There was supposed to be much less pain and discomfort reported by nearly every patient that had tried it.

Almost immediately things began to go awry. As the doctor placed the first needle he hit a nerve and was forced to remove the needle and try a second time. Again, he struck a nerve. Finally he managed to begin taking some spinal fluid. I held my breath and tried to get through it. Before they could finish, I made them stop. I felt guilty, but was too uncomforatable to continue. The doctor hadn’t been able to get enough fluid for his own study but he had gotten what was needed for the PPMI trial and that was everyone’s first concern.

Year four I chose to go back to the pro with the x-ray machine. By now I knew what could go wrong, I was nervous and apprehensive. Everyone on the staff is always extremely kind to me and once again it was a relatively uneventful procedure. I realized that the anticipation of what is to happen is probably worse than the actual procedure.

Following the lumbar puncture I am always made to lie still for an hour. The rest period is needed to prevent a headache. I’m usually given something to drink, juice or a coffee. By that time I am tired and anxious to leave and I watch the clock. I think about my good sport of a husband who is waiting for me in the waiting room where he has spent the entire day working crossword puzzles and reading. I want nothing more than  to get up and go home.

To complete the “long visit” I will still need to have a DaTscan but that will wait for another day. I am paid $250 for this annual “long” visit.  The visit is exhausting but I always feel well cared for and there’s always a nice dinner to look forward to at one of our favorite restaurants before heading home.

It’s hard to believe that the five years that I initially signed on for are now over.  The Cleveland Clinic was one of five original United States locations when I enrolled. The number of U.S. locations has since grown to around twenty. Participants have also been recruited at more than 30 sites around the globe including Athens, Sydney, Tel Aviv, and Barcelona.

At my last visit I was asked to sign on for three additional years. I’ve come to enjoy my time with Jennifer and Dr. Fernandez and so I agreed. Requirements for the next three years are changing and are supposed to be less taxing. Whether or not I actually continue will depend on just what those requirements are. I’m getting tired of being poked and prodded but I realize how important this study is. My contribution may some day help one of my grand children or great grand children. Knowing that makes it worth the time and effort.















































































































































































































































































































































































































































































































































































































































































































































































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