Status is great! Upped the Ropinirole drug from 8 mg to 10 mg last Friday, to see if this will better control the tremors in my right hand. After a couple weeks to determine if any bad side effects, I’ll move up to 12 mg. The theraputic range is 8 mg to 23 mg, so I’m halfway through this drug’s range, giving me a lot of room for this to be effective.
The trial in the headline is not my first legal trial (thank goodness) but my first research trial. The only way to defeat Parkinson’s is a lot of research, which requires a lot of volunteer humans with Parkinson’s – like me. Today I participated in two “observational” studies, that is, not “clinical” (drug testing) studies:
–PaGeR (Parkinson’s Genetic Research) Study. The goal is to identify genes that increase risk of developing Parkinson’s, and in particular, certain PD-related problems with thinking and memory. Even though I have no family history of PD, I still qualified for the study. This study started in 2007 and is ongoing.
—PANUC (Pacific Northwest Udall Center). This study also focuses on cognition. This study started in 2010 and is ongoing. They’ve recruited 600 people so far and have a target of 2000. There are 14 “Udall Centers” nationwide, all devoted to Parkinson’s research, and named after the late Mo Udall, a much beloved US Representative from Utah who had Parkinson’s.
If you have ever wondered what disease researchers do, it’s not as glamorous as you might think. My first research associate was Sam Jewell, who walked me through all the numerous consent forms I was required to sign.
Next up was Physician’s Assistant Gretchen Todd, who got to draw my blood (this is where the genetic info will come from.) Mercifully, they waived collection of the two teaspoons of saliva. And I didn’t sign up for the annual followup because it requires a lumbar puncture (spinal fluid — eeek). They’ll followup with me in 2-3 years. Gretchen also did a full neurological exam and had me fill out a questionnaire about pesticide exposure, head traumas, drinking water, etc. (See my post on PD risks.)
And last but not least was Jennifer Pate, who ran me through over an hour of cognitive tests. Memory tests (can you remember the list of 6 words I gave you 10 minutes ago?) , copying pictures, translate numbers to symbols, connect the dots, naming as many words as you can in a minute starting with “A”, and all sorts of fun tests. The hardest test was giving me a random string of letters and numbers; then I had to repeat back, but in numerical order, then alphabetical order. We eventually got up to 8 characters, which turned out to be surprisingly difficult. The last test: writing a sentence. I wrote, “My mind has turned to mush.”
Jennifer wasn’t allowed to give me a score, but she did let slip that she thought I did pretty well. Of course, that’s probably the standard protocol…after all, they’re not going to tell you that you did really poorly and your mind must be starting to go….! I’m glad that dementia is not an inevitable outcome of Parkinson’s. I’m working hard to keep my brain nimble!