Once again, it’s been a long time since I’ve written. I’ve been waiting to have something cheerful and inspiring to write about, and it’s just not coming. So, for those of you who are still reading, here’s the deal: when I first started writing this blog, I promised that I would try to avoid self-censorship and write about what was really going on, both the good and bad. I really haven’t been doing that, though; I’ve been cherry-picking the good stuff. I’ve been writing about fun hobbies, great trips with friends, fulfilling volunteer work, and occasionally pontificating self-importantly about my viewpoints on one subject or another. In part, though, what I’ve been doing is engaging in self-deception and denial, closing my eyes and pretending that Parkinson’s disease cannot see me. In a fit of magical thinking, I convinced myself that if I remained optimistic enough, maybe I could get a pass, or divine dispensation, or just catch a break from reality. It’s just not going to happen, though.
Optimism is good, of course; like faith, it can keep you going when otherwise there doesn’t seem to be much point. I’ve always been a little irritated by people who insist on finding a silver lining in every crappy situation they face, though. Those people are noble, inspiring, and worthy of emulation, but also sometimes just a little bit too good to be true. When you get a fried rat in your bucket of chicken and you insist on claiming that it really is the best fried rat you’ve ever had, you just lose credibility and make people want to punch you in the nose. The truth is, fried rat is unpleasant (I’m guessing). To paraphrase Jules (the guy that’s not John Travolta in “Pulp Fiction”), claiming that fried rat tastes like pumpkin pie doesn’t make it so. I suppose my conclusion is that Parkinson’s disease is a fried rat. I sincerely hope that’s an original metaphor; I’d hate to think that someone else has followed the same line of reasoning.
So, a little correction back to center on the crooked path – the last couple of months have been pretty tough. Today, I attended a support group presentation about PD from my neurologist, and he reinforced things that I already knew, but that I had been trying to ignore. Typically, when a “civilian” (someone who is not either a PWP, a caregiver, or a professional) thinks of Parkinson’s, the only thing that really comes to mind is tremor. “Oh, yeah – Parkinson’s. Isn’t that the people who shake?” Parkinson’s is vastly more than just tremor, and for many PWPs (including me), shaking is the least of their problems.
TRAP – tremor, rigidity, akinesia/bradykinesia, postural instability – are the cardinal signs of Parkinson’s. I started out with rigidity and bradykinesia, and relatively little tremor. As the disease progresses for me (and it is progressing quickly, it seems to me, which is not unusual for a young onset PWP), my tremor is getting worse and I’m starting to have problems with balance and gait. I was happy to be able to give up my cane after the DBS surgery, but it’s back now about half the time, although it’s turned into a trekking staff (which helps me to stand up straighter and is incrementally more cool).
TRAP only scratches the surface, though. I have started to experience something called dystonia; it’s like a muscle cramp, but it lasts for hours. For PWPs, it typically happens in the feet, legs, hands, and arms, but can happen anywhere. Recently, mine has been in my lower back. It’s quite painful, and coupled with the other signs and symptoms makes me look pretty goofy walking down the aisle in the grocery store. Like everything else, it comes and goes. I’m always glad to see it go but it’s coming back more and more regularly.
I’ve now been diagnosed for about four years. I’ve been taking carbidopa/levodopa, the gold standard medication for Parkinson’s, for that entire time. Carbidopa/levodopa is both a blessing and a curse – it’s currently the best medication for symptom control, but the longer you take it the more you’re at risk for a drug-induced side effect called dyskinesia. Dyskinesia is an involuntary “bobbing and weaving” movement that in its mild form looks a little bit like dancing, and in a more advanced form can be quite disabling. Until recently, I experienced dyskinesia mostly as a result of increases in the voltage level of my DBS signal when it’s reprogrammed. I’m starting to have significant dyskinesia between programming sessions now, though, and I assume it’s because of my constant exposure to carbidopa/levodopa over the last four years. The DBS system helps both dystonia and dyskinesia, but from what I understand it only gets worse from here. At what rate, I just don’t know.
I won’t bother to run the litany of all the other possible physical symptoms – any of the Parkinson’s websites, the Mayo Clinic site, or even Wikipedia can give you the full list. I don’t experience them all; just enough to be disconcerting and uncomfortable. Postural hypotension – yep. Urinary frequency and urgency – I regret to report yes. Digestive system upsets of various kinds – don’t get me started. Reduced speech volume and the beginnings of slurring – uh huh. Olfactory malfunction – yes. Depression – not so much, but probably only because of the magic of modern pharmaceuticals. Episodes of excessive sweating – you bet, and not just from living in South Texas. The list goes on, but you get the drift.
The physical issues aren’t the whole picture, though. I had an unreasoning hope that I would avoid the cognitive, psychological, and emotional issues that can accompany Parkinson’s, but it’s becoming more and more clear that this is going to be part of the package for me, also. I think more slowly than I used to and I have short-term memory issues, but up until very recently most of my cognitive impacts were actually drug side effects. Since the DBS surgery, I take less medication, so those side effects are also somewhat reduced, but I still have trouble with compulsive spending. Fortunately it’s not out of control, but I fairly often find myself taking things back to the store wondering why I ever bought them in the first place. It’s irritating and potentially problematic, but I’m fortunate that my wife keeps an eye on me from afar and doesn’t sweat the small stuff.
About 20% of PWPs eventually experience dementia, sometimes as severe as Alzheimer’s dementia. It’s unclear which PWPs will have problems with dementia, but some of the risk factors include early olfactory disturbances, a presenting symptom of akinesia/bradykinesia instead of tremor, and early onset of postural instability. That unfortunately describes me pretty well, and a recent event raises my level of apprehension even higher.
My wife and I have been married for 28 years, and we’re a pretty normal married couple. In other words, we occasionally get angry with each other, and we’ve had some real knockdown drag-outs over the course of the last three decades. Several weeks ago, however, after a stressful but very enjoyable weekend celebrating my wife’s birthday, we had another argument. The circumstances are relatively unimportant. What is important is that, for the first time that either of us can remember in our entire relationship, I completely lost control. I could actually feel myself spiraling up, and in a strange way I could stand outside of myself and observe how foolish my behavior was, but I was powerless to do anything about it. My wife later told me that I was red in the face, bent over at the waist and hopping up and down, and shrieking. I said terrible things to her, and she said that she was frightened of me. Rather than thinking about the argument, she said, she just wanted to make sure that I didn’t get between her and the door.
That kind of behavior is completely uncharacteristic of me, but that’s the point. Personality changes, including paranoia, rage, and aggression, are early harbingers of later cognitive decline. My wife sometimes says she can’t tell whether she’s talking to me or talking to Parkinson’s, and we can both take some small measure of comfort from the idea that it really wasn’t me that treated her in such a horrendous manner. It hasn’t happened again, and it may never happen again. However, neither one of us will ever be able to forget, and I think what makes me saddest is that I sense that I’ve lost something unrecoverable. Up to now, I’ve occasionally been obnoxious and unreasonable, and have behaved like the south end of a northbound horse, but I’ve never frightened my wife and I have never made her feel unsafe until now. It’s unimportant whether it was me or Parkinson’s, in the same way that it’s unimportant whether or not a dog that bites is responsible for it. Pragmatically, it’s the bite that’s important, not whether or not the dog carefully considered the pros and cons and thoughtfully accepted responsibility for his behavior. My sense of regret is enhanced by my knowledge that this disease doesn’t get better.
This is about as real as it gets. I know I probably shouldn’t be ashamed of a disease symptom, but there it is – I am. I know it’s a little old-school, but I’m supposed to solve problems and make things better, not cause problems and make things worse. At this point, I typically put on my curly wig and start singing about how the sun will come out tomorrow, how my friends and family are wonderful, and how fortunate I really am. It will, they are, and I am, but tonight I feel a deep sense of loss. I’m sick of eating this fried rat.