After my diagnosis in 2012 I immediately went public with it, so that I could join the community and help to find a cure. At the same time I agreed to participate in a 5 year study called PPMI or the Parkinsons Progression Markers Initiative. See below for more details on this study, but the main intent is to identify one or more biomarkers of Parkinson’s disease progression.
This study required me to provide major blood draws, regular lumbar punctures, DAT scans, cognitive and olfactory tests, etc. It’s hard to believe that this is my final visit in the 5 year program, time really is flying. I am proud of my participation, especially as I really am not a fan of needles. There have been some great findings already, as a result of the study, see below for two links links:
PPMI Data Shows Brain Changes Linked to Parkinson’s Progression
The Parkinsons Progression Markers Initiative (PPMI)
I have opted in for a continuation for several additional years, so looking forward to the advances to come!
Also important, the staff and my doctor were very excited to learn about my upcoming walk across america (walk4parkinsons.org) and looks like we will be able to leverage their PR team to help in publicizing the event, which is great. I also may be getting involved in the upcoming movement day.
A flew bloopers of sorts to mention:
- While having my blood drawn, the nurse accidentally caught the tube with her hand and ripped it out of my arm, and she inadvertently let a few expletives fly, before telling me that this was the first time in her career to have that happen. Blood did go everywhere and so did the needle, right on to the leg of an internist, who then had to be evaluated. Can’t make this stuff up!
- My heart rate lowered to 41 BPM during the puncture and the monitor started going crazy, but I ended up holding strong and completed it without issue and then headed over to Eataly for a late lunch.
Today is a training day off, as I literally have no fluid in my spine, but I’ll be back on the training program Saturday…..
