When I initially vowed to reduce my agonists several weeks ago in response to some distressing obsessive behaviors, I resolved to get off them completely. When I took that first step, a reduction of a measly 2mg/day:
I felt sick. I felt nauseous. I felt weird.
I wasn’t so sure I would be able to go all the way.
It turns out though that I still was having some strange compulsions. So I contacted my MDS. We decided it be best to get off them completely. This is the beginning of the 3rd day of being free of agonists. Since it takes a few days for them the get out of your system I’ve gradually had to compensate more and more with alternative l-dopa based medications. You know what? I mostly feel fine. Better than fine even…most of the time.
One of the downsides is I take a lot of pills now. Adding to the complexity of managing the disease is the “dose staggering” technique I’ve adopted where I basically take pills at regular intervals throughout the day. This both ensures I have a steady supply of dopamine in my system as well as keeps dyskinesia at bay.
On the other hand, the l-dopa based medications seem to work better for me than the agonists ever did. I’ve had long stretches where I’ve had the thought, “Do I even have Parkinson’s?” Wishful thinking that every Parky has indulged in more than once. Unfortunately, when the winds start running out on the ol’ spring box, I’m assured that the answer is, “yep”.
Hopefully, now that I’m completely off the agonists, the compulsions I’ve been having will disappear, never to return. Regardless, Parkinson’s is sure to keep me on my toes. What a crazy ride it’s been.
In the meantime, life goes on. My family and I have been doing some traveling and camping. First, we went to Spruce Knob lake for camping, biking and night photography. This weekend we have done some hiking at Rickets Glen State Park. Here are a few recent pictures from our latest adventures.
Next up, today we’re doing some biking and rafting.