Welcome to the new venue for The Crooked Path blog. This new blog site gives you greater opportunity to provide comments and engage in discussion, so have at it. I’m very interested in what you think, and what you have to say.
In the previous entry, I described the DBS surgical procedure that I’ll be undergoing on June 9. That date is getting closer all the time, and although I’m looking forward to the beneficial outcome, I have to admit to a little bit of apprehension. I have confidence in my medical team and in the advice that I’ve received from many places, but as I mentioned, my brain is one of my favorite organs, and I don’t poke holes in it without strong forethought.
Just a few days ago, I completed one of the major milestones on the way to the surgery date. I didn’t know what to expect from the neuropsychological exam, but like many elements of this whole process, it was fascinating. The entire exam took about two and half to three hours. It started with a Minnesota Multiphasic Personality Inventory (MMPI), a delightful collection of 576 questions that, if you’re not already crazy, would tend to make you that way. I had a fairly easy time with questions like, “I often hear voices that tell me to do things I shouldn’t do,” and “demons often inhabit my body.” I think I know what the right answers to those questions are, regardless of what the truth may actually be. I had a little more trouble with questions like, “I believe I would like the work of a forest ranger,” and “I think I would enjoy being a woman.” I may overthink these things; surely, it depends on which forest ranger and which woman, doesn’t it?
There were many other tests as a part of the neuropsych exam. Most of them activated my sense of competitiveness, and I worked hard at doing well. It was clear to me, however, that there were some segments where I didn’t do quite so well, and it’s made me wonder whether it’s just a normal effect of growing older, or whether it’s the Parkinson’s disease. One of the tests involved saying as many words that started with a particular letter as I could in 1 minute. Piece of cake, I thought to myself. I got through F and N without any problems, and then came the letter A. I started off strong; “apple, aardvark, archive, argument…” I got about 10 words into it, and then got stuck. For the life of me, I couldn’t think of a single word that started with “A”. I had an intense internal dialogue with myself trying to break through the “A-word logjam,” but I got nowhere. It was as if that entire section of the dictionary had just disappeared.
“Oh, come on, there’s all kinds of words that start with A–how about…, no, I used that one already. There’s always… no, not that one–too vulgar. Well, there’s… no, that’s a proper name, and he said I can’t use those. I wonder if he’d notice if I just got up and left the room? How long IS 1 minute, anyway? This is just getting ridiculous now. A, A, come on – you’re a smart guy – please, just one more…”
“Time’s up,” the psychologist said.
“Oh, thank goodness,” I said. “What the heck was that all about?”
In typical psychologist form, he said, “what do YOU think it’s about?” I fought an internal battle with myself, and avoided strangling the psychologist and ruining the whole test. It’s the small victories that are the most satisfying.
The final test involved dozens of cards printed with different shapes, different colors, and different numbers of objects. My task was to match the cards, and figure out what the rules were for matching. My inquisitor laid four of the cards down on the table, and gave me the rest of the deck.
“You place the cards were you think they go, one at a time, and after each one I’ll tell you whether it’s correct or incorrect.” Great, I thought. I’m good at this kind of thing. Ha.
I started slapping those cards down confidently. It went well, briefly. Thinking I had the algorithm down pat, I placed a card, and he said, “that’s incorrect.” Huh? No, it’s not.“I’m sorry, but it’s incorrect,” he said. Okay, I thought–just have to revise the algorithm a little bit. New data, no big deal.
“Correct, correct, correct, incorrect.” WHAT??? OK, gotta revise again…
My mind was awash with nested if-then loops, conditional rules, cases, and other logical constructs that my software development colleagues live and breathe, and that I vaguely remember from the one software engineering class that I took in graduate school. I may have mentioned that I have a tendency to overthink; however, this didn’t occur to me at that particular point. There was a mystery here, and I was going to figure it out.
“Correct, correct, correct, incorrect, incorrect, incorrect, incorrect, incorrect, incorrect, incorrect, incorrect, incorrect, correct ,incorrect, incorrect, incorrect, incorrect, incorrect, incorrect…” Can we go back to the “A” words now, please? Every time I thought I finally had the rule set, he would say, “that’s incorrect.” I began to suspect that this wasn’t about placing cards, but more about judging my tolerance for frustration. I resolved to be imperturbable.
“Correct, incorrect, incorrect, incorrect, incorrect, incorrect, incorrect, incorrect, incorrect, incorrect, correct ,incorrect, incorrect…”
“Alright, now you’re just messing with me.”
In his best Sigmund Freud voice, he said, “Hmmmm. Do you often think that people are messing with you? What do they do to mess with you? Does everybody mess with you?” Once again, the internal struggle; once again, a small victory. He lived on, and I stayed out of jail.
After roughly 10 years in hell, I finally came to the end of the card deck. I pushed back slightly from the table, looked my new friend in the eye, and said, “Okay. What’s the story? How does this work?”
“Well, I’m really not supposed to tell you…”
I debated telling him about my internal struggle, and how I might lose this time if he didn’t cough up the answer, but I decided that might work against me. In my calmest, most non-psychotic not-at-all-frustrated voice, I said, “I think it would be a really good thing for us both if you told me what I wanted to know.”
“It’s actually pretty simple,” he said. “For the first few minutes, you are supposed to match the shapes. Then you’re supposed to match the colors, and then you’re supposed to match the numbers. You seemed to be having a hard time with that.”
I stopped breathing momentarily, and even stopped shaking (which is a significant event for someone with Parkinson’s disease). “You were CHANGING THE RULES? Let’s discuss for a moment what a rule actually is, shall we? Let’s talk about horses in midstream; let’s talk about consistency; let’s talk about what you don’t do in the middle of a test. Okay? Okay?”
“So, consistency is important to you? Do you expect the world to be consistent? How does it make you feel when people are not consistent? Was your mother consistent?”
Apparently, I passed the test. I’m still scheduled for surgery on June 9.
On a more serious note, the neuropsych test has made me consider the potential cognitive impacts of Parkinson’s disease. I’ve been focused internally and externally on the physical symptoms of Parkinson’s; the motor symptoms, the autonomic nervous system problems, the degeneration of my body and my physical competence. I have been unconsciously avoiding consideration of the other part of this insidious, sneaky disease: the potential impacts on executive function, memory, complex decision-making, multitasking, and other higher-level cognitive functions. For me, this is the most frightening part of the disease. For most of my life, I have relied on my ability to think and to solve problems with my mind as part of my profession and of my basic personality. It’s by no means a sure thing, but the possibility of losing my mental competence and not “being me” any longer is deeply troubling. The neuropsych exam just underlined that possibility for me–how will I tell if and when it’s happening, when my instrument of observation is potentially suspect? Will I feel it slipping away, like Hal in the movie “2001: A Space Odyssey?”
When I started this journey, I promised to talk about the triumphs and challenges that I experienced along the way. I’ve talked about how this disease can destroy families and devastate relationships, but I spoke about these things from the comfort of distance, and honestly didn’t expect to be directly impacted by them. If I’ve learned anything recently, it’s that preconceived notions don’t survive well under the onslaught of Parkinson’s disease.
A Parkinson’s diagnosis is devastating not only for the PWP, but for the family as well. In some ways, I think it’s actually easier on the PWP than it is on family members. I have a choice every day about how I respond to this disease, but my wife, children, and extended family don’t have the same choices. None of us asked for this, but in a very real sense I have more control than the people who surround me. This diagnosis has been difficult for us all, and we’ve all responded in different ways to it. Some of those ways have been effective and some have not.
My wife and I have been married for over 25 years, and we have stood together and faced many challenges and overcome many obstacles. She almost single-handedly raised our children when I was in the Air Force, traveling constantly and moving every two years. We lived through periods when we weren’t sure where our next meal was coming from, and periods where the activities of an affluent lifestyle threatened to overcome our better natures. But we’ve always stood together. Briefly, Parkinson’s disease stole that from us.
My diagnosis frightened us both. My wife, facing the possibility for the first time in our lives together of having to be the primary breadwinner, threw herself into her career and tried to establish a 20-year foundation over the course of 12 months. She also was upset and disturbed by the changes that she saw in me, and unconsciously began to draw away from me. We were unable to talk about the details of my disease, the changes that the future might hold, and the ways that our relationship might become different over time. She was unable to come to support group meetings with me or to be a part of my coping process. Knowing how frightened she was, I didn’t push.
For my own part, I threw myself into a new community. I found people who had common experiences, and they became a type of surrogate family for me. Here there were people who knew what I was going through, because they were going through it also. I found a sense of community and belonging that I craved, and as time went on, I also discovered a particularly satisfying opportunity for leadership. However, I missed my wife’s companionship, and I began to be concerned that although our relationship had withstood enormous challenges, this one might be too big, and that I might have to face this disease without my partner and soulmate of more than 25 years. And so, foolishly, I began to rely emotionally on a friend more than I should have. I didn’t see it while it was happening, and thankfully it was limited in scope, but it was a step down a road I always swore I would never travel.
“For better or worse, in sickness and health, forsaking all others…” – these are important words, and they’re vastly more than words – they’re the core of the strength that has held my wife and me together for a quarter century. Parkinson’s disease is trying to destroy that strength. Thankfully, we have both recognized that it’s happening, and we’re fighting back. We both received a loud, ringing wake-up call, and just in time. Although there is damage to repair, we recognized it before there was large-scale destruction in our relationship. And once again, we stand shoulder to shoulder facing the real enemy. The disease is incurable, but it’s not going to win this one.
Not everyone is as lucky I am. Parkinson’s not only destroys health, vitality, and life, it also tears families apart, destroys relationships, and can steal the joy from life. We cannot let that happen. We cannot let it win. If you’re having some of the same issues, rest assured that help and support are available. AAPSG can make referrals to professional resources of all kinds to help you in the fight – just call, and we’ll find what you need.
There are not many milestones left on my way to DBS. I have a set of pre-op tests on June 7th, and a set of final updates to legal and financial documents and plans, but not much more. There will be one more chapter in the “before” part of this story, and then we’ll see together what things look like on the “after” side. Thanks for coming with me in this journey.
© 2011, Corey D. King