I, like many people, think I’m different and special. It’s the curse of my generation, I suppose – we are, after all, the generation that created a marching army of children who believe that participation deserves a trophy and that self-esteem is the same thing as self-actualization. I think the rules don’t apply to me; I am a charter member of the Lake Wobegon crowd, where all the women are strong, all the men are good-looking, and all the children are above average. And I just hate it when reality intrudes on my little self-aggrandizing fantasy and reminds me that I, too, am prone to the same unavoidable laws of nature that affect us all.
I’ll remind you of a pledge I made when I first started writing about my experiences with Parkinson’s disease: to tell you the truth, and try to keep personal bias and embarrassment from letting the story speak for itself. That’s harder at some times than others; I’ve become relatively accomplished at telling the difficult parts of this story with a certain detachment. I’ll also remind you of my deepest fear; not that I will be physically disabled (which I already am), but that I will quite literally lose my mind. I’ve comforted myself that statistics don’t apply to me – I’ve always been a top one-percenter, and I have been sure that the fact that over 40% of people with Parkinson’s will have significant cognitive impact, including dementia and psychosis, will not apply to me. The jury is still out, but it seems that I am wrong.
I have a wide variety of hobbies, and they all require care and feeding. I’m fortunate that I have the resources to play a little bit in my forced retirement, but those resources are not unlimited. I’ve recently lost control in a number of ways, though, and although it seems almost dreamlike and unreal in retrospect, I have to believe that either (or both) Parkinson’s disease itself or the medications I use to manage it are responsible. I’ve been doing things that are uncharacteristic of me, and which would be serious flaws in character, judgment, and morality if the disease were not a factor. I have to believe that, because otherwise I simply could not live with myself.
I have spent an inordinate amount of money over the last six months or so on “toys.” I know in most cases what I spent the money on, because there are records. However, I have also spend large wads of cash on things I can’t quantify. The really disturbing part of the story is that I’ve also been trying to hide it from Amy.
You don’t hide things from Amy. She has a nose for inconsistency and a Sherlockian ability to dig until she gets to the truth, no matter what it is. I’ve always admired her for that, but it’s never been applied to me in any significant way until now. It’s intensely uncomfortable, but it’s been necessary, and I’m not so compromised yet that I don’t feel a deep sense of shame about that. Lack of impulse control and compulsive spending are characteristic of both PD and the medications used to treat it, but I’m special, remember?
I’m disturbed to discover that I’m not always completely in control of my own actions, and I am heartbroken to know that Amy can no longer completely trust me. I know she will always love me and I also am aware that she understands, but we will need to make some changes so she can protect us both from the effects of this damned disease. I hate it, because it’s one step farther away from partnership and closer to dependence.
One night last week, I paid a visit the drugstore in the middle of the night. Amy was recovering from surgery, and woke up at about 3 am in pain. I’ve always had trouble when the women I love are in distress (sorry, my son, but your pain is like mine – we’ll get over it. Rub some dirt on it and get back in the game). It was not very smart of me, but I couldn’t stand to see her in such pain, so I got out of bed, put on the nearest pair of pants, and crawled into the truck. I was massively “off,” so it took a while, but I finally arrived at a 24-hour drugstore and took my bottle of extra strength Motrin to the checkout.
The young woman at the checkout (her name was Chrystalle, or Gristle, or something like that) rang up my purchase and waited, cracking her gum with a bored, faintly hostile expression on her face while I struggled with my wallet and dropped the bills in the floor (I had plenty of cash – I had apparently gotten several hundred dollars from the ATM the previous day). As I finally handed over the money, she said, “Had a few, huh?”
I replied, “No, I have Parkinson’s disease.”
She sneered, “Yeah, whatever. Have a nice day.” I was on a mission, so I didn’t rise to the challenge of a teachable moment, but her disbelief made an impression.
I expected to have trouble walking and moving. I expected to be mistakenly assumed to be drunk. I expected to eventually be unable to run, dive, ski, shoot, drive, swallow, and speak clearly. I also expected that these things would occur with me as a competent, mentally sharp observer, commenting and evaluating dispassionately as if it were really happening to someone else. That ain’t gonna happen.
I write these blog posts when I’m feeling up to it. As a result, there is a selection bias – I don’t write when I’m feeling foggy or confused. I write less and less often now, and that’s part of the reason. I will continue to write as long as I am able, but my silence will speak as much or more that my words. I’m still doing fine, but I’m not a statistical anomaly. I’m experiencing the full spectrum of Parkinson’s disease – physical, cognitive, and emotional – but I am still blessed. I have a family that loves and cares about me, the best medical team I could ever hope for, and friends like I would never have dreamed I would have.
And, I have Amy. I am blessed.