|Posted on April 3, 2017 at 12:15 AM|
PREFACE TO THE PARKIE CHRONICLES
Believe it or not, I’m sick of politics. Actually, I’m sick of what passes for “logic” and “facts” and appropriate rhetoric, none of which would win so much as a high school debate back in the day, let alone be taken seriously.
SO I’ve decided to co-opt my FB page to write, as have some of my betters before me, about my life and times as a Parkie – a term that many of us hard-core Parkinson’s disease (PD) patients use to describe ourselves and each other.
Mind you, I'm not "fishing" for responses. I’m merely telling my story. Everybody has one or more of their own, somewhere along the way, and I certainly do not mean to imply that mine is more unique than most. But I’ve had so many questions about Parkinson’s over the years (dozens from FB friends), that I’ve decided to answer them in a dated, story-like series that appears every Sunday on my FB page before being logged in my blog.
You’re cordially invited to come along. I don’t know how enthralling the tale will be; if you choose to journey with me, you can make that call.
Ready? Let’s roll.
26 MARCH 2017: THE WEEK THAT WAS
To get a good sense of how much fun I’ve had the past seven days, you need some inside knowledge about Parkinson’s. One of my descriptions is that I feel like three faces of Eve four times a day – meaning that one minute my body – sans my permission! – does a perfect imitation of Lot’s wife. However, within an hour, I could be disco dancing at best and am usually able to move normally enough the rest of the time. This little number repeats itself in often-unpredictable intervals, oh, 4-5 times a day. Technically it’s called “motor fluctuations” but we Parkies just call it OFF time.
If you want to try it, buy some duct tape and ask a responsible adult to wrap you up like a mummy for an hour when you’re so stoned that your brain can’t function and often goes paranoid without warning. Oh, and don’t forget the gag because you can’t talk very well either. No Virginia, this is not a new bondage game. I guess it could be, but you’d have to be a total idiot to try it.
What causes this dark magic to happen? Simply put, the meds that enable Parkies to remain functional are also the source of our worst dysfunctions. So an OFF time is when our meds suddenly take an unscheduled break and quit working. Voila: We shut down faster than the quittin’ bell on Wall Street. More about that later; just remember the duct tape mummy part.
So this week, I had started out fairly well. Often you can outsmart the mummy by dividing your day in columbarium-sized-box-like compartments, so that’s my general MOD these days. I’d had three REALLY good weeks, considering that I’d finally figured out how to keep the OFF times at bay after at least six months’ worth of setbacks that I won’t bore you with. I had been ecstatic the whole time because I thought we’d had a breakthrough!
I should have known better.
By 3:00 this past Monday, I’d not only morphed into mummy-state thrice, but to top off the drama, my blood pressure started shooting up exponentially (like, from 128/70 to 160/99 and back!) as every OFF time ran its course. I felt like what I hear tell is how a heroin addict feels during withdrawal -- except my roller coaster at least had some breathing time between rides.
“What the hell caused all this?” you might rightly wonder. “Can’t Lyle even manage her own disease?” Well, yes and no. Let me explain one of the “no’s” that could have a simple fix, but for Big Pharma. Again more about that later. For now, I’m only talking about PD drugs.
Now, don’t get me wrong; generic drugs have their place. But that place is NOT among the gold-standard dopamine-centric drugs that treat PD. As any Parkie can tell you, those drugs have to be as precise as an atomic clock, or they will virtually set your hair on fire (while you’re a mummy to boot). Generics are by law allowed to vary some 45% -- meaning 20% weaker or 25% stronger than the “real label” brand. So my torture started with my testing generic versions of my drug … because the label drugs I’ve been paying $120/month for will cost more than my pension when I trip into Medicare come July. Big pharma sure has, and much to their benefit I might add.
The weird thing is, for three weeks I thought I’d found a generic PD drug that would work. Now I'm not so sure – because somehow in the cacophony of my meds file drawer, a “bad” generic brand had been labeled (by the drug store, mind you!) the same way as the presumptively “good” generic brand, and I didn’t notice the difference. I mean, who reads pill markings if the meds look the same and have the same label as the bottle you took yesterday? Now, that would be me! All it took to learn that one the hard way was a week of mummified torture, a severe bout of insomnia, and I don’t know what all, because I’ve seen only a few hours of sanity in the past 144.
So I’m going back to the label drug for a week, hoping to arrive back at square one by this time next week. Then I have to start the process all over again. Why? Because one of the two PD drugs I take has to be a generic for me to afford it; and even at that, my drugs alone going to cost me at least $500 smackers a MONTH – that is, if I want to have a life at all and function within and among the human race.
Watch this space to see what happens this week. Same time, same station.