This has been quite an eventful last few weeks. I hardly know where to start; I suppose chronological order works as well as anything else. So, here we go…
I’ve had several programming sessions since that initial session back in July. In general, things are going great with this new electronic gadget. However, although I’ve been instructed in strong terms not to play with it, I feel it’s only prudent to understand how it works, and to know how to turn it on and turn it off when I need to. Not everyone agrees; and unfortunately I’ve recently shown good evidence that, instead of applying my typical “arrogance with electronic devices” approach, perhaps I should Read The FULL Manual before I begin claiming that there’s been an inexplicable 25% drop in voltage level in my stimulator battery, and begin hauling medical device representatives, neurosurgeons and neurologists, and people off the street into a room to discuss what’s wrong with the darned thing. When, oh when will I ever learn to listen to my wife?
“It’s probably just the batteries in the programmer, don’t you think?”
I didn’t think–that was my problem. My second problem was that I didn’t listen to my wife, who was thinking.
“Naaaah, can’t be. I remember clearly that someone at some point said something about a percentage level, related to something that I don’t remember but that I’m convinced has to do with the stimulator battery. That makes sense, doesn’t it?”
No, it didn’t. So now, I’m under strict injunction to think about topics other than my stimulator, and to give the whole “Electro Boy” thing a rest. What’s the fun of having a new electronic device that’s actually inside my body if I can’t have a little fun with it now and then? Perhaps I have the wrong attitude about this whole situation. And what’s more, now I have credibility to rebuild. It’s all so unfair. I suppose I’ll go play with my helicopters.
Which brings me to a slightly more serious subject , although at the outset, it doesn’t seem all that serious. These things never do, I’m beginning to see. Over the course of the last 18 months or so (not coincidentally, about the same time I began taking a Parkinson’s medication of a type called a “dopamine agonist”), I’ve developed an interest in model helicopters. They’re fascinating–they have little tiny parts, you can break them and put them back together endlessly, and when you get good enough you can actually fly them around the room and chase the cat with them. For someone with both an aeronautical and mechanical set of interests, they are almost perfect.
You’d think that one or two would be enough to satisfy nearly anyone. Not so, particularly someone with compulsive tendencies created by a dopamine agonist. It’s been slow and insidious, like many things associated with Parkinson’s disease, but over the course of the last year I’ve developed quite a fleet of model helicopters. At last count I have 14 of them. In the clear light of retrospection, even I can see that’s a little bizarre. It’s not at all unusual behavior for someone with PD taking a dopamine agonist, however. As matter of fact it’s somewhat benign given the possible spectrum of behaviors.
Compulsive behaviors brought out by dopamine agonists can include compulsive gambling, hypersexual behavior, compulsive shopping (for helicopters, for instance, or home electronics, or home automation equipment, or Fudgesicles, just to name a few random possibilities), or an obsessive focus on almost any activity or object. The compulsions are brought out by the medication, but the behaviors are real and can cause upheaval, relationship damage, and financial ruin for people who are not wary. Like many of the physical symptoms that for years I was able to explain away as something else, I have been able to justify my focus on these new hobbies of mine as a healthy way to replace things that I’ve lost–scuba diving, sports, running, skiing, and most other physical activities. After all, everybody needs a hobby, right?
My compulsive behaviors have been relatively easy to control, and the impacts have been minor so far (although I do have a few pounds to lose from all those Fudgesicles). The realization that I was behaving compulsively, however, has opened a new set of discussions and possibilities to consider. These are among the hardest subjects to discuss about Parkinson’s disease, but they are a real part of the syndrome and need to be discussed.
In addition to the motor and autonomic nervous system symptoms associated with PD, there is a spectrum of potential cognitive impacts as well. They can range from minor short-term memory disruption to severe dementia almost as profound as Alzheimer’s disease in some cases. According to the medical literature, nearly every Parkinson’s patient experiences some cognitive issues, even if they are mild and not significantly more noticeable than just the usual effects of aging.
My family and friends have begun to notice in me signs of what is known as “executive dysfunction.” Although that sounds like a bad quote from a Dilbert cartoon, it’s related to the ability to multitask, to think abstractly, to remember and apply facts, and to interpret motivations and read situations effectively. Executive function is a metacognitive process – a cognitive process that helps you to use other cognitive processes. Executive dysfunction can result in short-term memory loss, impulsivity, difficulty in switching thought processes from one situation to another, and difficulty in developing concrete plans based on abstract thought. Executive function is what I’ve done for a living for most of the last 28 years.
My DBS system is helping to make my motor symptoms much more manageable, and my new exercise program coupled with physical therapy is helping me to move more easily. My various autonomic nervous system malfunctions can be managed by a combination of lifestyle changes, medications, and simple tolerance. However, the cognitive and metacognitive issues associated with PD can be more difficult to manage.
So last month, after 28 years of a deeply satisfying and varied career as a military officer, an executive in public, private and start-up companies, and a leader and manager in the nonprofit research and development world, my wife and I decided that it’s time for me to focus on staying as well as I can for as long as I can. I began disability leave from work yesterday, and given the nature of this disease, I don’t anticipate returning to my professional career. It was the hardest decision of many hard decisions we’ve made over the last 2 years, but I think it’s the right one.
The changes in me are slight, and probably would not even be noticed by anyone who doesn’t know me well. They, like the other symptoms of PD, are easy to explain away or to blame on the natural course of aging. The things my wife in particular has seen only she would be able to recognize, because no one knows me as well as she does, warts and all.
Everyone approaching middle-age begins to have memory problems; the stories that I tell about myself are familiar to many of my contemporaries. Misplacing keys, forgetting what you’re going to say, walking into a room and not remembering why you are there; all of these occurrences are familiar to people of a certain age. But, in the 26 years that I’ve been married I have never lost my wallet. In the last 2 months, I’ve lost it twice–the last time with “extreme prejudice.” By itself, it’s an inconsequential event. But, when coupled with other inconsequential events that are fundamentally out of character for me, a pattern begins to develop. In addition, I FEEL different. I can tell that there’s something going on that is completely uncharacteristic of me. It is slow, and hard to notice–yesterday is not significantly different from today. But last week is slightlydifferent from this week, last month is noticeably different from this month, and last year IS significantly different from this year. I can deny it or I can acknowledge it, fight it where I can, and live with it where I can’t fight it. I’ve had enough of denial–I’ll take the second path.
You can find an excellent description of executive function at:
© 2011, Corey D. King