I’ve always looked forward to the Christmas holidays. When I was young, the anticipation and excitement was almost too much to bear, and my brother and I would “practice for Christmas morning” to ease the tension. “Practicing” entailed getting into bed fully clothed each afternoon leading up to Christmas Day, pretending to be asleep, and then whispering to each other, “do you think it’s time to get up yet?” We would draw out the suspense for as long as possible, and then jump out of bed and race each other to the Christmas tree in the living room. He always won; he claims it’s because he was older and more agile, but I still think it was because he cheated and wasn’t shy about tripping me.
We stopped “practicing for Christmas” years ago (probably because I grew faster as I grew older). As an adult, I began to look forward to Christmas as a welcome respite from the demands of work life, a chance to spend time with my family, and in later years, an opportunity to try new ways of celebrating the holidays, like food poisoning while scuba diving in Cozumel and broken bones while skiing in Park City. I even looked forward to going back to work after the holidays were over; the “fresh start” newness to old tasks and responsibilities made even the most difficult jobs more bearable.
This is the first year in nearly 30 years that I haven’t had to go back to work after the holidays were over, and I have to admit that it feels unnatural. The holidays feel like a movie without a satisfying conclusion. For the true geeks among you, it’s kind of like watching “The Return Of The King,” the concluding episode of the Lord of the Rings trilogy – an enjoyable experience, but every time you think it’s reached the end, it hasn’t. Over, and over, and over…
You’d think that a perpetual vacation would be a good thing; during the most stressful, difficult years of my work life I fantasized about never having to work again. Now that it’s here, I find that it often makes me uncomfortable, even though I had hopes that one day I’d be able to retire early. I wanted to hit the finish line at full speed, leaning forward and “dipping for the tape.” John Steinbeck had it right about best laid plans, though, even if he stole the idea from my distant kinsman Robert Burns (or from Psalm 33, depending on who you ask).
I still count myself fortunate, though – through a combination of hard work, good planning, great advice, and extraordinary luck, we’re going to be ok. Unexpected disability is one of the leading causes of mortgage foreclosure and bankruptcy; that’s not likely to happen to us (partially because I’ve mustered up the self-control to stop buying model helicopters. My wife’s influence had absolutely nothing to do with it). Parkinson’s is also notorious for contributing to relationship difficulties, fractured families, and divorce, but that’s not likely either. We’ve certainly weathered a few storms and had our fair share of water slopping over the transom, but we’re still seaworthy. Also, my wife, in true Texas frontier woman style, has learned to shoot. She says it’s to be able to protect me in the future; it’s possible that she just wants to keep me polite and humble, though. It’s working.
One of the best things we have done in recent memory is to listen to the advice of a trusted financial planner who is also a family friend. She advised us, at a time in our lives when we were absolutely sure we were invincible, to hope for the best but plan for the worst and buy long-term care and long-term disability insurance policies. Her advice could not have been more on target, even though I chafed at the idea of spending money for such a thing when I was obviously so healthy. Having taken her advice, in large part, will keep my Parkinson’s diagnosis from causing financial catastrophe for our family. Although our lifestyle is now radically different, disability insurance will keep us from near-term financial ruin, and long-term care insurance will prevent my eventual need for professional care from bankrupting my wife when the time comes. Things could be much worse – this tIme, Burns and Steinbeck were wrong.
With Parkinson’s, there’s always some new and interesting physical malady to manage, and I’ve had my share recently. In the spirit of full disclosure, I’ll tell you some of this may be a little difficult to read, and this may be one of those times when you’d like to skip along to the happy ending. I’m just playing Walter Cronkite here, though – this is the way it is.
One of the lesser-known and more puzzling symptoms of Parkinson’s is disruption of the sense of smell. Most often, a PWP’s sense of smell (and consequently the ability to taste more than just the basics) just fades away over time, and can be one of the first symptoms of the disease. In my case, however, my sense of smell went temporarily insane for several months not long after my initial diagnosis, after having been largely absent for many years. For 4 or 5 months, I constantly smelled a pervasive, horrible odor that I could never get away from. I even imagined I could smell it when I was asleep. It smells like a combination of rotting shellfish and burning plastic, and initially it was bad enough to make me actively sick to my stomach several times a day. It’s back now, familiar and revolting but not nearly as intense. We tried everything we could think of the first time around to mask the smell: chewing gum, breath mints, air fresheners, candles, unscented laundry soap – nothing worked. I can advise, however, that if your spouse ever suggests that you put peppermint essential oil in your nostrils to combat a foul odor, you should back away with your fingers in your ears. I’ve only recently stopped sneezing, crying, and smelling peppermint-scented burning plastic and rotting fish.
In addition to all the other lovely motor symptoms, PD can cause digestive system slowness and difficulty swallowing. The resulting combination of severe heartburn and choking when eating and drinking can cause problems, and recently I had a related experience that has shaken me more than I realized. Several weeks ago, I spent a sleepless night after having eaten something for dinner that disagreed with me. Even the wonder drug that I’m taking for gastric reflux was ineffective, and the heartburn burned through. In almost every other case this wonder drug truly is wonderful–it’s called Dexilant, and it’s a big part of the reason that I can sleep in a bed again at night, and not sitting up in a recliner. On this night, no luck, however.
At about 5:30 AM, I thought I felt well enough to try to grab some sleep. After only a few minutes of dozing, though, I woke up choking. It’s happened before (without being too graphic, the reflux refluxes a little too much), but this time was different. I was coughing and wheezing, but also unable to catch my breath. My wife tried to help me to relax and calm down, but I was caught in a vicious cycle. Stress makes all Parkinson’s symptoms worse, and I was under some considerable stress from the “no breathing” situation. In this case, the stress triggered a bout of dyskinesia. So, I once again found myself getting a week’s work of exercise in just a few minutes, but this time while not breathing. Vicious cycle, indeed.
After claiming several times that I really was getting better, and a short battle with my mother-in-law (my wife didn’t get her fortitude by accident), I arrived at the emergency room, where they did doctor stuff and determined that I was coughing and not breathing well. After x-rays, EKG, chest listening and thumping, and a couple of hours of calm breathing, the episode passed and they let me go home, with stern warnings not to do any of that again or there would be consequences.
I’m making light of the situation, but I must confess that, for a brief, irrational time, I thought I might die. It’s an odd realization for someone who’s lived almost half a century and once considered himself to be indestructible, but my mortality has slapped me in the face in the last 3 weeks. It’s one of those unpleasant “mustn’t touch it” topics, but PD is life-limiting. Asphyxiation from choking, aspiration pneumonia, acute injuries and complications from falling, dementia, and depression can all have life-limiting effects. I don’t dwell on it excessively, because ultimately EVERYTHING is life-limiting, and PD symptoms are treatable with exercise, medication, and surgery. The fact remains, though, that we don’t have anything yet that significantly changes the rate of progression or course of the disease.
I understand that no one knows when their own end will come, and that we all could get hit by a bus at any moment (why is it always a bus?). However, the likelihood is that I won’t get hit by a bus, but that I’ll live out my days with Parkinson’s, die with it, and probably die from it as well, according to a recently published research report. I’m finding that this realization makes me impatient–with foolishness (my own and other people’s), with meanness, stupidity, and cruelty, and with bad choices and bad judgment (again, my own and other people’s). We all have so little time, and we waste so much of it.
My realization, at long last, that I’m not immortal has moved me in a more philosophical direction (which is saying a lot for a guy who’s been a thinker and ponderer his whole life). Answers and reasons have always been important to me, but these are some of the most important unanswered questions in human existence – why is this happening? Why am I here? What do I do next? How do I keep going? I know that answers to these questions are available from many sources, but with this new, intense sense of immediacy, many of those answers are unsatisfying to me. I answer those questions in the near term by thinking about my wife, my children, my family, and the ecosystem of friends and loved ones that surrounds me. For now, I’m here for them and for you; the larger answers will either come or they won’t, but I won’t stop seeking. Thanks for coming with me.
(c) 2012, Corey D. King