There’s the Rub


“TMI! TMI!”

Because I worked at a Nuclear Power Plant in the eighties, it took me a while to figure out that “TMI” didn’t stand for “Three Mile Island’ but instead is an abbreviation for “Too Much Information.” Which is exactly what this post borders on.  But, hey, I promised a long time ago to be open and honest about my experiences with Parkinson’s disease, so here’s the good, the bad,and the ugly of where I find myself these days.

First, the easy part – the good: Physically, I feel pretty good.  Still working out every day, still eating more good things than bad. Balance issues are much better than a year ago, as it’s been that long since I’ve had a significant fall, and I crash into walls and doors less frequently.  That’s the good news.

The bad: My eye to hand coordination is pretty bad, and I struggle to do simple things like tying my shoes. A couple of weeks ago while I was trying to help my wife hang new window shades, I had so much trouble lining up the bit on my cordless drill with the little Philips-headed screws that I soon gave up. Last fall, sighting in my deer hunting rifle was an exercise in waiting out the shakes until I was steady enough to hit the target a couple of times, just one of several factors that leave me about  95% convinced my deer hunting days are behind me now.

The worst part of my failing eye to hand coordination has been the impact it’s had on my ability to navigate a keyboard and write.  When I look up at the screen after every paragraph I write I see the red font of Windows error notifications splattered across my monitor as if someone took a machine gun to it. (For example, here’s how that last sentence looked after I first typed it, before I cleaned it up:

When I lok up at he screen after evey paragraph I write I see eh red ink ofWindow’s

Erro notificatioonsaplatttred as if someoentook amachine gun o it.)

But all of that, difficult though some of it might be, I can live with, and when one considers that we’re going on thirteen years since I was diagnosed, if that were all there was to it, I’d be ecstatic.

However, I think I’m entering the ugly stage, and this is where I might be sharing TMI:

I think I’m in the early stages of Parkinson’s dementia.

It’s a difficult conclusion to come to, and even more difficult to share with the whole friggin’ world, but here we are. Maybe my willingness to share TMI is just another sign that I’m going crazy.

What makes me suspect I’m losing my marbles?  Well, here’s my analysis of my current state compared with what the Alzheimer’s association (alz.org) has to say about Parkinson’s dementia:

What percentage of people with Parkinson’s develop dementia?    An estimated 50 to 80 percent of those with Parkinson’s eventually experience dementia as their disease progresses. The average time from onset of Parkinson’s to developing dementia is about 10 years.

So thirteen years in, this might be the right time frame, although I’m finding that a lot of these averages are skewed towards the typically older age at which PD is usually diagnosed, and there might be other contributing factors at those advanced ages that don’t apply to me, since I was diagnosed in my mid-40s. In other words, the ten year average is probably a bit longer for us early on-setters, so I’ll choose to ignore this as a likelihood.

Here are the symptoms of PD Dementia that they list:

Symptoms: (From https://www.alz.org/dementia/parkinsons-disease-symptoms.asp)

Changes in memory, concentration and judgment

Anybody who’s known me for a long time knows that I was always something of an absent-minded professor, prone to all too frequently forgetting where I left my car keys. This has continued and seemingly worsened over time, but I’m still reluctant to recognize it as anything other than the erosion of short term memory that is typical with aging (I recently turned 59).

Concentration is a different manner, however, as I now doze off and fall asleep within a half hour of cracking open a book.  This is new and frustrating as Hell. I had a pretty ambitious list of books on my autumn reading list, books by William Kennedy, Anne Lamott, Cormac McCarthy, and T.C. Boyle.  Now here we are in mid-winter, and although I’ve started reading them all, the only one I’ve finished is Kennedy’s Ironweed, (a great book, btw). I remain somewhere in the first couple of chapters into the others, not how I typically like to read (I’d rather finish one before starting another).

Trouble interpreting visual information

This has become a big one for me, as I am always seeing things wrong. For example, the silhouette of a basket of dirty laundry on my bedroom floor might look like one of my dogs sleeping peacefully. It’s normally that benign, and I almost always recognize when it happens and if I stare at it long enough, I’m able to process what the shape really is. Sometimes, though, it can be jarring. One time, while alone in my cabin in the woods, I looked up from the chair where I was reading and there under the end table on the other side of the room, for a moment, I saw the severed but still smiling head of my son.  It was only for a second, and I was quickly able to determine that it was, in fact, nothing but an old misplaced snowshoe that the lamplight hit at just the right angle, but it was long enough and vivid enough to scare the crap out of me.

 Muffled speech

This has been a major source of frustration for me for some time now. I often mumble and stutter. The reason this is a big deal to me is that for someone who fancies himself a writer, nothing is more frustrating than coming across as inarticulate and slow. Recently my internal reaction to people who complain “I can’t understand you” has changed to anger, irrationally directed more at the listener than P.D., and I have to bite holes in my tongue not to snap and lash out at them. As a result, more often than not, I find myself becoming quiet and not participating in conversations.

Visual hallucinations

Fortunately, I haven’t had any of these yet (that I’m aware of).

Delusions, especially paranoid ideas

Unlike the current President of the United States, I’m fine on these fronts.

 Depression

 I understand how serious and debilitating depression can be, and although I have the occasional down day or two, it’s nowhere even approaching anything clinical. More days are still good than bad, and most of the time I can easily distract myself away from dwelling on the negatives.

 Irritability and anxiety

 Although I am often irritable, and certainly anxious about things, I don’t think it’s anything out of the norm. (My wife might disagree.)

 Sleep disturbances, including excessive daytime drowsiness and rapid eye movement (REM) sleep disorder

Here’s my biggest and scariest symptom, especially if you add in “vivid dreams” and the “acting out” of them.

First, daytime drowsiness is just about constant.  I take an afternoon nap almost every day, and on many days, I take a late morning nap, too. It doesn’t seem to matter how much nighttime sleep I get, either. Most nights I get six to seven hours of good sleep. There have been nights where I get as many as eight hours in, only to want to go back to bed an hour after waking.

Within the past few months, though, I’ve started having, with greater regularity, vivid and violent dreams that I act out in my sleep.  In one dream, I was sitting at a bar with a friend and some unknown jerk who did something to piss me off. I reacted by grabbing him by the hair on his head and repeatedly slamming his face on the bar.  The only thing that stopped me was the sound of my wife’s voice yelling at me to stop it, as I had a hold of her forearm in bed and was trying to smash it on the surface of the bar in my dream.  She woke me up before I could really hurt her.

The worse was a dream I had this past Saturday.  In the dream, I was on a big boat of some sort being captained by a big, armed guy who for some reason I knew with certainty was going to crash the boat in some rocks that lay ahead. As he was bigger than me and armed, I knew my only hope to overtake him was to catch him by surprise. When he came out on the deck, I jumped him and got him down and started raining punches on him as fast as I could. I woke sitting straight up in bed, still throwing punches down on the pillow below, where my wife slept. Suddenly to my horror I realized where I was and I looked at the clock radio on the nightstand, and it said 8:12.  The room was lit by daylight, and I realized that my wife had already woken and was downstairs, and her side of the bed was empty.

The dream was scary enough but paled in comparison to the realization of what would have happened had she still been in bed. She assures me she isn’t worried, that so far when these dreams occur she is able to wake me up long before any real damage is done. Still, in the nights since last Saturday morning, I often find myself rolling over and putting my back to her, so if I wake up throwing punches, it isn’t at her.

. . .

So what does this all mean? In all likelihood, I guess it means that the disease is progressing. But that is certainly no surprise.  It’s what diseases, especially “progressive” diseases like PD, do. They progress.  Duh! I’ve known for a while that these things will eventually catch up with me.

The novella “Flowers for Algernon,” by Daniel Keyes, tells the story of a man with limited mental facilities who is given a serum by some scientists that transforms him into a genius. The problem is that the benefits of the serum are only temporary, and over time, he will transform back into an idiot, and he soon realizes, becomes aware of, his inevitable decline.  It always struck me, from the earliest days of my diagnosis to now, now that it appears I might be standing at the beginning of some really dark days, that Parkinson’s is all about the same awareness and inevitability.

But while awareness of the inevitable and its encroaching darkness might lessen the light of even the brightest of good days, there is also heightened awareness of all the amazing truth and beauty to be found in the every day.  Things like love and beauty, friends and family, food and drink, touch and taste, and wonder and awe, are all within our grasp in the everyday slant of the invisible ultraviolet rays that penetrate a window shade, and their memories are bright enough to give at least brief respite to the unending agony of the darkest night.

My job these days, then, is to capture as many memories as I can and put them in my pocket, so I can take them out and watch them illuminate the thick blackness of the coming night.

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Scout’s Honor


It’s been a while since I’ve been around kids. The youngest of my three children, my daughter Hannah, graduated college a couple of years ago, and has started a career while seeking out her Master’s degree in Public Health.  My middle child, Nick, started a year-long contract to teach English in South Korea about three or four weeks ago.  My oldest, Jon, recently celebrated his 32nd birthday, and is working in the corporate world and living in downtown Chicago. I am immensely proud of each of them.

My wife and I have settled comfortably in to the roles of empty nesters. My daughter began college in 2012, so we are coming up on six years since any of our kids have lived at home. However long it has or hasn’t been, it’s been long enough for us to get used to the open spaces that now occupy so much of our house and the blissful peace and quiet that’s replaced the chaos and the sound and fury that once accompanied the presence of three teenagers living under the same roof at the same time. While many times we look back with fondness and affection to our days as younger parents, more common are the times we blissfully go about our lives as a late middle-aged couple (or is it as an early senior-aged couple?)

A couple of months ago, I received an e-mail from a woman named Kathy Whiteside, who was looking for a local writer to help her Girl Scouts troop achieve a “screenwriting” badge. Looking through the materials, it was clear that the intent was to introduce the girls to story-telling concepts and fundamentals than screenwriting specifically, so I was confident that I could help facilitate the session, even though I know nothing about screenwriting.

I was less confident in my ability to get across to kids concepts like character development, rising action, conflict, and protagonists and antagonists. It’d been so long since I coached Nick’s softball and basketball teams, so long since I’d been around kids in any capacity, that I wasn’t sure if I could reach them.  It didn’t help that some professional teacher acquaintances had painted a pretty bleak picture of today’s youth. Short attention spans, feelings of entitlement, and the lacking of rudimentary skills were more the norm than the exception.

So it was that I took my seat in the middle of nine 6th to 8th grade girls with a bit of apprehension. I started by telling them that I am a writer, and the thing I love most about writing is that there are no rules you have to obey; that when I write, I’m free to write whatever I  want to write about. At first, I wasn’t sure they were listening, but when I asked them questions about what their favorite books or movies were, about the difference between books and movies, they all had opinions and were thoughtful and engaged. They’d all read most if not all of the Harry Potter books.

Kathy and I took them through several exercises, with the goal of having a collaborative, group written outline of a story by the end of our two hours together.  We started out with each girl creating a character and assigning attributes like favorite foods (tacos are apparently very popular these days in this demographic), colors, etc. I was surprised when three of the girls wanted their characters to be animals (a couple of cats and a pig, although the girl who wanted her character to be a pig later changed her mind).

Then we had to create a villain, and they quickly decided upon a mean bully need Nate. Whether Nate is based on a real person or someone on television or in a popular movie I can only guess as I am so far out of touch with the mass culture of the pre-teen girl demographic.  They showed a surprising level of sophisticated thinking when they not only described the inciting moment that would kick the plot into gear, but they also came up with a reason for Nate to push poor Romeo into a locker after school. I was surprised that they weren’t just satisfied with Nate being bad; that they felt the need to explain why he was. They also set up a scene for the climax of the story, where the group of “good friends” would meet Nate and his ”bad” friends the following night after school. But that was only the beginning – after that, things got real interesting.

The girls had to explain why there were two cats among the friends who went to school together. It turns out, that, unknown to one another, they discover that night that they are “shape shifters,” and all have the ability to transform into animals.  They agree to arrive at the fight the next night all in their animal forms.

Imagine their surprise when they all show up the next night as animals only to be met by Nate and his friends, who have all also shape-shifted into animals. Stunned by the knowledge that the two groups have more things in common than they don’t, the fight is averted, and new friendships are forged.

It’s a pretty slick little story, if you ask me. Beyond that, for me, it was as much fun as I’ve had in a long time. Watching the different personalities and how they interacted brought back memories of my children at those ages, and of the softball and basketball teams I coached. The girls had all of the same pent up winter energy that my basketball teams used to have, and they laughed at the same in-jokes that only friendship can provide.

I was delighted to see that kids haven’t changed. We live in terrifying times, with ugly mean-spiritedness dominating our politics, and with a President that seems hell-bent on starting another war, whether in the Middle East or the Korean peninsula.  It’s difficult not to become overwhelmed with cynicism.  Being around these kids for just two hours was the antidote to what was ailing me, and restored my faith in humanity.  These kids were smart and well behaved. After only a few minutes, I could see them focusing, getting into the story and feeling the rush that only creativity can bring. They collaborated beautifully, they were respectful and considerate with each other. It was obvious to me that they came from good homes.

The night also shone a light on the fact that storytelling is at the core of being human. It’s what separates us and makes us the dominant species on earth. It’s how we make sense out of the cold randomness of existence, and in these times of divisiveness and fear, it’s our only hope for bridging the gaps between us. Like in the story the girls invented, at the end, all of the shape shifters discovered that the things they had in common were greater than the differences.  It’s a moral that their parents’ generation would do well to recognize.

As I drove home, it occurred to me that if we’re ever going to dig ourselves out of the mess we’ve made of this world, it’ll be by the grace of children and the art of storytelling.  And there, on a cold Wednesday night in a Girl Scout meeting room in Kenosha, Wisconsin, I witnessed the intersection of these two forces of nature, and I was humbled by the profundity of the truth it revealed.

 

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