“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.

Today, July 4^th, is one of the most important holidays in these United States:  Independence Day, or the country’s birthday, the day we declared ourselves to be a free and independent state.

To be independent, to be free, is one of the most powerful and universal dreams. It’s so powerful because almost everyone has a personal independence day that they long for.  Whether it’s freedom from a job and the independence to retire and do what one wants, independence from an oppressive spouse or parent, or independence from financial burdens, we all recognize and share the vision of unshackling the chains that bind us, that prevent us from achieving our dreams. It’s at the core of being human.

It’s easy for me to name what I dream of independence from:  Parkinson‘s Disease.

I’m at the point now where every day is literally a street fight between myself and this stupid fucking disease.  And if you want to know who’s winning, all you need do is count the bruises on my body from the frequent falls and the walls and furniture I ‘m constantly crashing into as a result of the balance issues I struggle with. Right now, at this moment, I have bruises on both arms and shoulders, one on my back, and a particularly big and purple shiner on my left hip that is finally beginning to fade.  I’ve had enough falls and crashes by now to know that it takes 48 to 72 hours after the worst ones for the pain to appear. Last Thursday night was one of the worst so far, when I fell out of bed flat on my back.  Like clockwork, the pain has started to set in this morning.

Then there’s my speech and voice.  I stutter and slur my words and mumble softly, and when at my worst, people either simply don’t hear me at all or mis-hear me, nodding yes or shaking their heads no when in fact I never asked a question.  Usually I try to speak up and make myself heard, other times I figure it’s not worth the effort and let it go.

For a guy who fancies himself a writer, nothing is more frustrating than coming across as inarticulate.

And speaking of writing, I usually try to fit my writing time into that brief window when my meds have kicked in, because otherwise, it’s getting too difficult to operate a keyboard.  If you look closely at the dates I post articles to this site, you’ll notice almost a steady decline in my output.  What used to be once a week has turned into once every other week or less.

There’s a new thing that’s been kicking my ass lately, and that’s “freezing.”  I could always tell when my meds start to wear off because I become very rigid and stiff, and movement of almost any type becomes very restrictive.  What’s new is my brain’s apparent difficulty to multi-task when I’m in this state.  Any physical activity I attempt to do, whether putting on my socks or getting out of a chair, requires my full concentration.  For example, every morning, when putting on my socks, my mind begins to drift as I think about the things I want to do in the upcoming day, and before I know it, a minute or two has passed by and I’m still sitting on the edge of my bed, sock in hand, staring at my foot.

This all sounds very depressing, and trust me, more often than I’d care to admit, it is.  But despite all of this, I haven’t given up.  I’m currently a week away from completing my second go at Parkinson’s physical therapy training, and I religiously do my stretches every day.  I still work out daily at the Kenosha Memorial Hospital cardiac center and still lift weights, trying to ignore the pain in my arms from my bruises.  And there are times, especially after I exercise, where I feel good.  I’ve learned to treasure and bask in these moments, even when they last for only ten minutes or so.

Every morning, when I wake up, I tell myself that while it‘s inevitable that Parkinson’s will eventually win, that doesn’t mean I can’t give it a good fight. Maybe, for that day, at least, I can kick its ass, and declare my own independence, however short-lived it may be.

Here’s a quick, random and hopefully helpful note to anyone who has Parkinson’s disease.  It’s probably painfully obvious, but trust me, it’s important.

If you’re walking, whether just from the parking lot to the store or taking a long walk through the park, if it’s wintertime and cold out, wear gloves on your hand.  If it is warm enough not to wear gloves, then it is warm enough to keep your hands out of your pockets. Never walk with your hands in your pockets.

Reasons are twofold:  first, arm swing, whatever arm swing you have left, is a very important component to maintaining balance while walking.  Hands in your pockets restrict arm swing and  increase the likelihood of falling.

Second, if you do fall (and trust me again, if you  have Parkinson’s and haven’t fallen yet, you will), having your hands free increases your odds of getting them up and in front of you in time to brace your fall.  You simply can’t rely upon the reflexes you’ve trusted all your life to be fast enough anymore, and without your hands to protect you, a harmless fall can turn deadly.

Winter here in the cold states is particularly risky, as all it takes is one small patch of ice hidden from view to tip you over.  Having your hands in front of you could make the difference between a laughable anecdote becoming a serious injury.

One of the books on the bookshelf in my office is Dempsey, the autobiography (as told to Bob Considine and Bill Slocum) of the great heavyweight boxer Jack Dempsey.  On the inside front cover, in black ink, my grandfather wrote, “Nov. 5 1971 – To my grandson David.  I would not want you to be a prize fighter. But you should learn to defend yourself. One never knows.  Chris Gourdoux.”  Since November 5, 1971, was the day after I turned thirteen years old, I can only assume the book was given to me as a birthday gift. One of the things I remember about my grandfather was that Jack Dempsey was a hero of his.  I seem to remember a story about my grandfather meeting Dempsey once, but I can’t for the life of me remember any details.

My grandfather was born late in the nineteenth century (I can’t remember if it was 1896 or 1899), and as a young man, for a period of time, he was a boxer.  How good of a boxer he was, we can only speculate. I found him in the Boxing Records site (boxrec.com). His name is misspelled (Chris Gourdaux), but the date and being from Flambeau, Wisconsin make it unmistakably him. They have a record from only one fight, a six round draw with someone named Joe Blake from Birchwood, Wisconsin, on December 9, 1921, although I know the records are incomplete, that he had more fights than that.

Sometime after the Joe Blake match, he took over the family farm, and his fighting days were over. When I knew him, he was older and retired from both ventures, but, like we all do when we grow older, he spoke with a fondness for those days as a fighter, the days when he was young. He came to visit us in the summer of 1971. I remember asking him what he thought of the first fight between Joe Frazier and Muhammad Ali, which had just taken place, and I remember him saying that he thought Ali was a better boxer, but Frazier was a stronger puncher. I also remember one warm morning stepping out on our front porch and hearing loud snorting sounds coming from the garage.  I looked in to find my seventy five year old grandfather shadow boxing, working up a good lather, and loudly breathing and snorting through his nose, still enlarged and flattened from fights that took place fifty years earlier.

My grandfather died in 1984. What has me thinking about him is a workout regime I recently started at “Go the Distance Fitness,” a small gym here in Kenosha, Wisconsin.  “Go the Distance Fitness” specializes in training boxers, and providing workouts that use boxing training methods. A friend made my wife and I aware of a report on NPR about how a gym in Rhode Island is using boxing training as a method of fighting the onslaught of Parkinson ’s disease. http://www.npr.org/blogs/health/2015/02/02/381937503/fight-back-against-parkinsons-exercise-may-be-the-best-therapy   It’s the latest example of how exercise can help fight the advancement of the disease, and appealed to me immediately, as I have no patience for the treadmill or stationary bike in my basement.  I try, and within minutes I am bored to death, and thinking about that leftover burrito in the refrigerator.

The workout is called circuit training, and consists of two minute rounds at various stations.  There are curls done with weighted balls, there are various punching bags (including a speed bag and a big bag), there are crunches and medicine balls, there’s just enough to work up a good sweat and get you breathing.  It’s all go at your own pace, so if your old and out of shape like myself, you start at lower levels and expend less energy until you’re ready to pick it up a pace.

It’s perfect for me because it gets me out of the house, it isn’t too demanding, it’s fun, and it’s short enough not to become drudgery.  It seems to really help with my Parkinson’s symptoms – I’m noticing already improvements in my balance and posture after working out.  To be clear, this training isn’t designed for Parkinson’s and it’s not considered physical therapy.  It does, however, seem to be similar to other regimes, like music and dance therapy, that have been successful in helping PD patients.  The little bit I understand about the theory behind exercise and Parkinson’s is that people with Parkinson’s have a shortage of dopamine, that their brains are not producing and transmitting enough dopamine to its receptors.  What certain types of repetitive exercise do is establish a rhythm that the brain can adjust to in place of the natural rhythm of the transmission of dopamine that the disease has disrupted.  This is why dance therapy has proved so effective, and why working the speed bag, for example, should also be effective.  This is also why, I believe, that writing has been so therapeutic for me – in addition to giving voice to my anxieties, there is a cadence to writing that when you get on a roll can be downright euphoric.

In my previous post, “The Other Side of the Coin,” I was having a bad day, the combination of Parkinson’s and cabin fever having gotten to me. So far, working out at Go the Distance has helped on both counts, getting me out of the house and making me feel better.  Most importantly, it’s given me back a sense that I can fight this disease, and maybe, if I can’t beat it, like my grandfather against Joe Blake, maybe I can work my way to a draw.

My grandfather wrote, “But you should learn to defend yourself.  One never knows.” I understand now that I need to defend myself against my own willingness to give up.Putting on a pair of gloves a few times a week seems like a good place to start.

“Go the Distance Fitness” is located in Simmons Plaza at 7707 Sheridan Road in Kenosha. It is owned by Dan and Carol Ouimet. Their phone number is 262-654-2741.  Visit them on the web at  http://www.gothedistance-fitness.com/

My wife and I went to Menard’s this morning, to pick up a few things for some work needed around the house.  We got there, and as we walked through the parking lot to the store, I noticed a middle aged guy walking with a limp, sliding his right leg along with him as he walked.  Inside the store I noticed another guy, this one with a facial tic that made his head bob and jerk uncontrollably.

Then I noticed another guy, around thirty years old. There was nothing unusual about him, but our eyes met, only for a moment, and I recognized that he was looking at me like I was looking at the other broken people, and I became aware that my rigidity was showing in my walk.

So I’ve joined the corps, the ranks of the broken brigade, the random and anonymous people I’ve so often times noticed in the past. I never imagined that I’d become one of them.

I’m down. I don’t have many days like this, but when I do, they’re a living Hell. I wallow and mope. I am aware of how much my rigid body aches, and the usual coping mechanisms fall short.

On days like today, I tell myself that this wasn’t part of the deal, the aching, the rigidity, the drooling, the losses of balance, the fatigue. I never asked for any of this. All the things I usually tell myself feel like bald faced lies. On better days, I always remind myself that there are any number of people out there who have it a whole lot worse, who’d give anything to trade places with me. But today that argument falls flat, and I can only see myself like I could have been, like I was supposed to be, if not for this fucking disease. The accumulation of things lost becomes overwhelming.

It’s winter and there isn’t a whole lot to do outside. The ground is covered with several inches of snow that drifts up to a couple of feet in some areas, making just walking around the yard a dicey proposition with my impaired sense of balance.  During the weekdays I am alone with my dogs in the house. Cabin fever is definitely setting in.

My fear on days like today is that it’s not me. I look in the mirror and I don’t recognize the pathetic loser staring back at me. There’s no spark of resistance, no fight in his eyes. This is what scares me the most – that eventually, days like this will become the norm and not the exception, and I’ll have given up, admitting defeat.

But, in the immortal words of Scarlett O’Hara, “tomorrow is another day.” It may sound corny and naïve, but sometimes, corny and naïve are all you’ve got.