The one thing i've noticed being a (now advanced) PWP is the total inconsistency of good/bad days: lack of/full of pain, emotional/unfazed mood, controlled/uncontrolled wake/sleep patterns, mobility/akinetic movement times, and all the other "inconsistencies" that disconnect us from being considered "normal people.
IT's often been said here that we are like candles in the wind, either burning a bit lopsided from a gentle breeze, or threatened with being blown out by a strong wind.
I just can't figure this out. I seem to be on a "stable" medication regimen, one that i have selected throughout many years of trial and error, but even when life isn't throwing me a curve ball, it still whaps me on the head whenever it wants to, and i have no say in the matter. I remember being "without PD", and I could always just sleep off a bad day at work or whatever and be "fresh and ready" for the next day. AS a young man, I could haul and tie a hundred pounds of rebar every 10 minutes at a construction site, or pile a ton of wood onto "bunkstock" every 15 minutes at a sawmill. Hike up mountains, go on gruelling 3 day trips into wilderness. Weld or cut steel all day, and do many "everyday" jobs that general laborers do, without any ill effects.
Now , i can't even pick up one piece of rebar without getting a sharp pain in my back, let alone pick up one of the 24' by 10x2" rough boards that we would sling one every 10 seconds. I am totally, severely disabled.
I'm sure that all of you have similar experiences. Sometimes i think that i got PD from "burning myself out". BUt whatever, however, i got PD, all i can say is that on some days, and for some amount of time, be it minutes, or hours, I "come back " to life, and it has no rhyme nor reason, say after a dose of meds. Sometimes I just get so tired i have to go to bed, sometimes i can operate an automobile, or cook up a good meal, or even walk "normal" enough for an hour or two. IT totally throws my family off. MY wife blames me of "selective" disability, as if i'm trying to shirk responsibilities at will. THis , not being the case in any way is what makes this disease so damn frustrating. One minute you have hope that maybe you are getting a bit better, the next moment you think only a DBS will allow you a continued independent existence.
Just a bit of nonsense for you guys to chew on. Does anyone get big "up" peaks, followed by gigantic "off" peaks. How severe are they?