Yesterday I reached a new milestone in my journey with Parkinson's Disease. I have been taking a dopamine pre-agonist called ropinirole for a year and a half now. I recently increased my dose to 18mg/day (3x 6mg) to help control my symptoms. I visited my movement disorder specialist (MDS) shortly after the change and he assessed my condition.
The good news is that I'm still Stage I and scored better on my assessment compared to my initial diagnosis.
Quick review: Parkinson's Stages Stage I One side of the body is affected. Stage II Both sides of the body are affected along with posture and gait. Stage III Slow movements and poor balance. Stage IV Severe symptoms, difficulty walking without assistance. Stage V Wheelchair-bound (or bed) and care provider required.
The bad news is that my symptoms increased significantly in severity since my last check-in. The higher the UPDRS score, the higher the severity and quantity of symptoms. My first visit tagged me at 21. That dropped to 7, then rose to 10. My most recent score? 19. My left hand is my dominant hand and also where most of my symptoms manifest: tremor, stiff arm and fingers, random finger twitching and difficulty doing things like tapping my fingers in rhythm. This has led to difficulty typing and controlling my mouse.
My MDS, my wife, and I had a lengthy chat about options. The two that came up were:
Add Carbidopa-levodopa, brand name Sinemet. Levodopa is a precursor to dopamine. Carbidopa is an inhibitor that prevents the body from processing levodopa before it can get to the brain. Since the 1960s, this has been the gold standard drug for treatment of PD. Short term side effects include nausea and vomiting. I'm experiencing the first but thankfully not the last. The main long term side effect is dyskinesia or involuntary movements like swaying, writhing and wiggling.
Consider deep brain stimulation (DBS). The treatment involves surgically implanting wires in the brain, running them into a battery pack inserted under the skin of the chest (similar to a pace maker), and then tweaking the battery to produce the right frequency and intensity of pulses to counteract PD. Brain surgery may seem like a last resort, but I'm told this surgery is more effective the less time you've had the disease and that I'm at a perfect age to handle the surgery well and reap benefits for many years.
Although I'm open to the idea of DBS, right now we're waiting to see how the Sinemet works before looking elsewhere for a solution. I'll be phasing it in over the next week and then will be taking a combination of Sinemet and ropinirole until we need to tweak again.
I look forward to working through the nausea and reaping the benefits over the next week This really hit home for me, seeing how fast the progression can take hold and moving to what is now a "staple" drug. Unfortunately, the only trials available right now are detection-based instead of treatment-based. I still volunteered to let them take several skin biopsies (called "punches") to test how well they are able to detect PD based on the sample. Although it doesn't help my condition, early detection could be a game changer for people diagnosed in the future so I'm happy to help them collect the data they need.
The Fun Stuff
It hasn't been all pills and symptoms the past few days. Doreen and I took Pepper on her first hike, and she did great! Here we are posing next to the most gnarly tree in Washington State.
Last night, I stayed up to watch the Pleiades meteor shower. I only saw a few shooting stars, but it was fun. I also used my phone to capture this short animation of the night skies.
I happened to notice a satellite slowly working its away across the sky and captured this shot. Aside from the clouds, I'm fairly certain the straight streak you see in the middle of the frame is Kazakhstan satellite Cosmos 2219.
To top it all off, I picked up a single piece of mail on my way home: a summons. I get to go on jury duty! Should be interesting.
Thanks for reading this short update!
Until next time,
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