Observations

The Dark Side


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.

12 thoughts on “The Dark Side

  1. Ron W.

    I really appreciate your deep insight into your soul. I do find your blog encouraging but honestly sometimes I have to cry for you, me, and others in our community.Other times your articles make be want to shout “Look, see, I am not crazy. I am not making these symptoms up!” and then the protective instinct kicks in and I want to shield my family, friends, and co-workers from peering into the future. Maybe if I suck it up, gut it out, and work 12 hours a day to get 4 hours of productive time I can still be the man who I use to be. This is usually followed by the feeling that is the most insidious that I really don’t care. But I honestly hope it doesn’t fool anyone because deep down I really do care. I am just having trouble expressing it sometimes. Anyway, I look forward to your next discourse whether it’s on the dark side or light side. Take care my friend.

    P.S. Is there a recipe for rat kabob?

    http://bertc.com/subfive/recipes/cookingrats.htm

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  2. Richard

    It was great seeing you at the info session the other day…Dr. Pappert’s talks are so informative…on the downside, they are also very frightening. I observe Sheila’s progression and read your thoughts and see many similarities. I wish only the best for all the wonderful people I’ve had the opportunity to meet in this ‘fried rat’ fraternity. As observers, we ‘support’ folks have a tendency to look for the silver linings, even when they might not exist-perhaps as much for ourselves as for our loved ones in pain. While we may lack direction, we bleed sincerity. Know that we come from a good place and pray everyday for the miracle that will deliver us all…again, good thoughts. All the forces in the cosmos know you are doing your best. Thanks for sharing your thoughts.

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    • cdk

      Was great seeing you both, too – It’s been too long.

      One of the things I appreciate the most about Dr. Pappert is how straightforward and honest he is. PD is frightening, no doubt – for me, though, uncertainty and bad information make it more so. With him, you never need to say, “…give it to me straight, doc.” 🙂

      And, to avoid miscommunication – I was speaking about myself with the “silver lining” comments. I sometimes try so hard to make light of a very unfunny situation that I’m concerned that I may be trivializing the devastating suffering this disease causes to everyone it touches. I am absolutely not criticizing the selflessness and generosity of spirit of caregivers, or optimism in any form. I’d rather eat pumpkin pie – some days, though, there’s just no denying that rat taste ;-).

      Here’s to good days and no rat in your bucket for you both –

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      • Richard

        We continue to aspire to diminished rat presence…btw, was severely addicted to MST3K-t shirt, hat. Silver lining-so little Houston viewership made it kinda cool. I stopped b4 lunchbox-you can take compulsive behavior to extremes, I’m lead to believe…

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  3. neil jarrell

    I owe you an apology, Corey. Thinking about it, my comment about “gizzards” was inappropriate to the spirit of your piece. I saw a spot for a joke and I took it. What you and 2 and a half million Americans (including me) go thru daily, is no joke!!!
    I’m aorry my friend. Your journey thru this hell with no cure (YET!!) has seemed to me a rather rocky, rough, defeating journey. Your sharing your experiences – – – sometimes rather raw . . . . have been important to me . . . . . . I’m learning from your “doing”. Thanksyyy

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    • cdk

      No apology necessary, my friend. We’ve got to take every opportunity we can to joke about this stuff – I’d personally rather laugh than cry or mope around with a long face. My journey’s no different than any of ours, Neil, except that I can’t seem to keep my mouth shut about it :-). I hope some of this is helpful (although I think that I lot of it just makes people cringe). We’ve all got different ways of trying to make sense out of what’s happening to us and the people we love – mine just happens to be the “Mystery Science Theater 3000” approach of observing, describing, and trying to make fun of it.

      One of my favorite people in the world likes to say, “I tell jokes to make myself laugh – it’s just an added bonus if you laugh, too.” Let’s keep making fun of this damn disease and telling all its secrets – maybe we can destroy its power to break us down and steal our joy in life.

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  4. neil jarrell

    Corey – – – You paint a picture of a future that I HAD thought I was ready to know. I fear that I was not as ready as I thought. As I too begin to move in to new “challenges” in the destruction of this not so old body of mine and the senses contained there in, . . . . . I wake up in a cold sweat only to realize that the dragon I read about in my “little boy’s” fairy tale book is no fairy tale. In it’s eyes I see a “Dante’s Inferno”. – – – – I have to tell you that as I and my brothers and sisters come closer to the horrid picture of HELL as having Parkinson’s Disease in the later part of your life – – – I just have to ask, Cory, . . . .are the fried rat gizzards any good???

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  5. Jackie Bartoletti

    My 5 star rating is simply an indication of how completely beautiful and talented your writing is Corey… and for your honesty and heart. What a gift. If I had to rate how you feel and the realities you face I would give it 0 stars… and wish there is something any of us could do to change it.

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  6. Susan Crumrine

    Corey, Its great to hear from you again, even if it is to report that times are tough! We miss you at SwRI! I wish you the best and will keep you in my prayers!
    Susan Crumrine

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    • cdk

      Hi, Susan – so nice to hear from you too. I saw Ronnie yesterday at the CyberPatriot lunch, and mentioned to him how much I miss all of you at SwRI. Thank you for your kind thoughts and prayers, and best wishes to you.

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