First, I would like to make sure everyone knows that all the clinic staff, doctors, and nurses on my journey through this clinical trial (and it is ongoing) have been absolutely fantastic. I can’t even begin to calculate the cost of all this care. But hey, when someone is mucking around in your brain for 11 hours, and all for the sake of science, you want the best! I feel kind of like Steve Austin in the old TV show, The 6 Million Dollar Man (I know I am dating myself on that one). So where were we…
So one part of the clinical trial involved taking a trip to a research clinic in Portland. The purpose of this trip was to see how dopamine levels changed in my blood stream and this particular clinic had been doing this kind of research for over 20 years. Let me just say this right now, this had to be the most difficult part of the clinical trial.
I was on a whirlwind from the moment I passed all the inclusion/exclusion criteria. In order to hit my Jan surgery date, I had to have multiple scans, visits, labs, and this Oregon trip completed. So the clinic coordinator in Portland called me up and we booked my flight and hotel quickly for the 3 day visit (2 of which were in the clinic). They also covered my food and expenses, which included my wife joining me. The downtown hotel was very nice (not that I got to enjoy it much) and the restaurants in Portland are fabulous. So, what can be so hard about this trip you ask?
We arrived the first day, I think it was a Tuesday, checked in with the clinic and then left for the hotel. I, however, would have to return to the clinic that evening by 9:00. The deal was I would have to sleep in the clinic and turn over my meds so that they could ensure that I was “crashing” in the morning. And from the previous post you know how I love that! I was a dopamine junkie on lock up. So after a long night (I still don’t know why they can’t make hospital beds more comfortable), I was fully crashed (off meds) by morning. By the time the nurses came in to prep me and give me breakfast, I was miserable. The routine was the same for both days, except one of the days was a lower dose and the other a higher dose. No one knew which day was which (blinded). The “routine” is quite possibly the most difficult thing I have done in my life.
Placement of 2 IV’s, one in each arm. One was for drawing blood the other for the infusion of dopamine. Before they were put in I went through a series of clinical test to establish a baseline.
- Sitting up, test if I can rapidly touch my forefinger and thumb together with my arms raised above my shoulder. Very difficult to do in an off state.
- Again with my arms raised, flip my hands over and over like flipping a pancake.
- Arms raised turning my hands like I was screwing in a light bulb.
- Test the rigidity in my arms and legs (the neurologist moves them while I TRY to relax).
- Tap my hands on my thigh and my feet on the ground in a stomping motion.
- stand behind me and pull my shoulders to test balance.
- From a seated position, get up and walk as fast as I could to a mark on the floor and back (timed). Try that while lugging around your IV cart.
- Count of finger taps, both left and right, on a counting machine that had 2 type writer like keys about six inches apart.
- Cognitive tests like count back from a 100 by 7.
All these things that are normally easy for those that don’t have PD, but it is like climbing Mt Everest when I am crashed! The blood draw and these tests were done every HALF HOUR!! This goes on all morning till the dopamine infusion runs out and I start to show signs of crashing again. Well, the first day, I never turned on! Theoretically, I am supposed to get the infusion and start feeling normal again, NOT. After an hour of the tests, I told them I couldn’t get out of bed anymore. I just couldn’t do it. They reluctantly said o.k. but at the end they wanted me to perform the routine one last time, couldn’t do it. I have told you how active I am, and you have seen the picture, but without dopamine, I was unable to get out of that clinic bed. Around 1 or 2 in the afternoon, I was allowed to take my regular medications and like magic, I was back to normal. But this was all to be repeated on day 2 and if that was the high dose I seriously contemplated dropping out of the study. I slept in the clinic and managed to talk myself into doing it again for the sake of science.
The second day was clearly the higher dose, as I kicked in after 15 minutes with the infusion. The neurologist who was there the entire time doing the test felt compelled to introduce herself again as I transformed into my normal jovial self. After the 2nd clinic day, I was done and finally got to enjoy all that Portland had to offer.