Nice


“I urge you to please notice when you are happy, and exclaim or murmur or think at some point, ‘If this isn’t nice, I don’t know what is.'”  – Kurt Vonnegut

I’ve done enough whining on this site about the times when Parkinson’s is getting the best of me that it would be wrong not to write about the past week to week and a half. The simple fact is, that for some reason I don’t fully understand, over that timeframe, I’ve felt great.  Indescribably great.  Great as in how good one can feel when compared to how crummy I felt.  Great as in I’ve actually reduced taking my meds from once every three and a half to four hours to once every nine to ten hours. It’s been literally years since I’ve felt this good.  And while my voice and handwriting are both bordering on being illegible, those seem like minor complaints.

The balance problems that were not only getting me but actually literally knocking me down have largely vanished. Where I was prone to falling or crashing into walls or doorways or furniture multiple times per day, I now move normally and freely about 90% of the time. I’m sleeping six to seven hours a night, and while I still sometimes take a quick nap in the late morning (I’m convinced because  of the cumulative side effect of my morning cocktail of six different meds), I’m awake and alert the rest of the day, and avoid the afternoon naps I’d been taking.  I never imagined I’d feel this good again.  Ever.

Why am I feeling so good?  Well, I’m not sure. Here are my guesses:

  • On the cardiac front, I’m still watching what I eat, and exercising an hour to an hour and a half every day. I recently had my annual physical with my doctor, and the numbers are very good:
    • Weight: 212 pounds (down from 235 before my bypass surgery)
    • Total cholesterol: 120 (down from 230)
    • LDL (“bad” cholesterol): 48 (target:  < 100)
    • HDL (“good” cholesterol): 54 (target:  > 40, ideal > 60 – still have  a little work to do here!)
    • Triglycerides: 88 (<  100 optimal)

While exercise and diet have been big contributors to my improved numbers, my nightly dose of Lipitor has been just as big a factor.

Heart disease, while scary and deadly, has been pretty easy to prevent.  Just eat right, exercise, and take my Lipitor, and my numbers go down. These have been tried and proven methods, and the numbers provide an excellent indicator of progress.

Unfortunately, for Parkinson’s, it’s not as black and white. There are no proven biomarkers to determine how likely one is to get Parkinson’s, and once diagnosed, it’s known as a “snowflake” disease, as in everybody’s instance of the disease is a unique combination of symptoms and side effects that progress and evolve and react to treatments in varying and often times unpredictable ways. Treatment tends to be reactive and is dependent upon symptoms and is often trial and error.

So why am I at this point, eleven years into my diagnosis, suddenly feeling so good?  I have no idea.  What my guess is, is that after my recent appointment with my Movement Disorders Specialist (MDS), Dr. Z., we’ve arrived at a combination of meds, Deep Brain Stimulator settings, exercise, and physical therapy regime that are perfect for where I’m at in terms of the disease’s progression and how my unique instance is behaving at this time.  Specifically, Dr. Z added an additional med to my daily cocktail, which has enabled me to cut back on the amount of Carbidopa / Levodopa I consume.

I do know that I am incredibly lucky to be treated by a MDS, especially one as gifted as Dr. Z, at one of the premiere institutions in the country, Northwestern Memorial in Chicago. Because I treat there, I have access to resources that sadly aren’t available to too many people who are suffering much more than I’ve suffered.

The other thing I know is that I’m better off appreciating these days when I’m feeling so well instead of wasting time trying to figure out why. I don’t know when this “honeymoon” period will end, I just know that it will.  It might end tomorrow, next week, next month.

Until it does, all I can say is, “If this isn’t nice, I don’t know what is.”

Independence Day


Today, July 4th, 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.

Daily Miracle


Let me start by describing how a typical day for me begins:

I wake up, stiff and rigid and most mornings sore, but not too bad. I move slowly, and that has nothing to do with being or not being a morning or a night person or how much sleep I did or didn’t get, it’s just the speed I move at.

I’m usually up between 6:30 and 7:00.  I shuffle downstairs, take my morning Parkinson’s meds and my heart meds and my acid reflux pill – it borders on the ridiculous, the desktop in my office looks like a pharmacy – and grab a cup of coffee and see my wife off to work.  Then I go in my office and log on to the computer, checking out e-mail and Facebook and reviewing any writing I may have done the night before.  The point here is to kill enough time, thirty to sixty minutes, to allow my Carbidopa / Levodopa pills to kick in.  Until they do, the rigidity is pretty bad, and I feel pretty crappy, and a little bit nauseous until I eat something.  I’ve found that waiting a half hour to an hour after taking my morning blends of pills and caffeine before eating seems to work best, and I usually have something very light, like a cereal bar or a clementine and a glass of juice.

Then the “dopas” kick in and most of my rigidity goes away, and I’m loose, too loose.  I flop around the house, my head bent over my torso like Groucho Marx, and my legs try to keep up with my head and the more they try to keep up the more they fall behind and the more out of control I become, my momentum finally stopped by  crashing into walls and doorways.  I overshoot targets and narrowly dodge furniture.

Then, at about nine or ten o’clock, I get up and get in my car and drive myself the seven miles to the hospital in Kenosha where, just about a year ago now, I underwent triple bypass surgery.  As a result of being a Cardiac Kid, a member of the heart disease fraternity, I am eligible (for a reduced annual fee) to use the rehab center at Kenosha Memorial Hospital. I go every day and work out for an hour to an hour and a half, and almost every morning, when I get up, I don’t feel like going. But I drag myself up and out of the house five or six days a week, reminding myself how out of shape I was in when my heart issues hit last year, and how much I want to avoid a repeat of that whole experience.

So I get there and I work out.  I still start by loosening up with the same basic stretches and hand weights I learned when I was still recovering from the surgery. I know from a cardio pulmonary standpoint they aren’t required anymore, but they loosen me up and shake off some of the residual Parkinson’s rigidity, and while I can’t quantify it, I believe they’ve helped me increase my range of motion.

Then I do thirty minutes on a treadmill, every now and then graduating to an increased incline and speed. I’ve kind of reached a limit on these settings due to my floppiness – often tines, the first ten minutes or so are dominated by my stooped posture and impaired balance, and it can be a struggle to keep up.

Then, on Mondays, Wednesdays and Fridays, I hit the weights.  There are seven machines I do twenty reps of differing weights. I only do these every other day to give my muscles a day to rest.  I find my strength has increased since last summer when I started – recently, less dramatically and slower than at first, but still increasing nonetheless.

Then I do one last activity, experimenting on different equipment, recently settling on a rowing machine, which I currently do five minutes on every day, counting in my head the number of strokes I pull.  At first, the five minutes was wiping me out, but now, I set a personal best on the number of strokes almost every day, and even though I’m doing more faster, I’m not nearly as fatigued as I was at first, and soon I will up the number of minutes,

Then I cool down by walking a few laps on the corridor surrounding the facility when it happens.  Every day, at some point, I notice that I’m walking in a straight line, with my arms swinging, my head erect.  None of the stooped posture and flopping around like a fish on the end of a line. For at least an hour, on good days up to two or even three hours after exercising, I move about normally, and while Parkinson’s still annoys me with constant salivation and impaired speech and incomprehensible handwriting, its primary symptom, the impact on moving, is gone.

The really great thing is that every day, at some point, usually while still walking my laps, I become aware of this phenomenon, this daily miracle, and every day, I am truly appreciative and thankful for its occurrence.  I don’t know how long this will continue, if eventually it won’t occur anymore, but for now I could care less.  All I know is that when it does occur, I feel amazed and blessed, and for that moment, I take nothing for granted.

                Don’t it always seem as though /  You don’t know what you’ve got ‘till it’s gone

–  Joni Mitchell

Parkinson’s disease sucks and I wish I didn’t have it.  I have to confess I ask myself, more often than I should, why me?  Pure bad luck is the best answer I’ve come up with so far.

But then I ask myself, how many other people are made aware of how beautiful and wonderful the ability to simply move freely is, and I realize that luck, good or bad, is a double edged sword, and that curses and blessings are often wrapped in the same package.

Hands Up


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.

In This Corner


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/

The Other Side of the Coin


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.

Channel Z


Normally I’m pretty good about observing important anniversaries (never forget a birthday or my wedding anniversary) but yesterday one almost slipped by me.   Which is surprising, since I literally can’t get it out of my head.

Yesterday, at about 10:00 or so in the morning, was exactly five years since I had electrodes installed in my head as the first part of my Deep Brain Stimulator (DBS) procedure.  I woke up in an operating room  in Northwest Memorial Hospital in Chicago with my neurosurgeon, the amazing Dr. R., literally in my head, listening to the sound of my brainwaves amplified on what looked like a pretty impressive sound system that played nothing but static.  I had to be awake as Dr. R.’s team talked to me and bent my elbow and listened to the sounds of the static to make sure they were accessing the correct parts of my brain.  Every now and then, Dr. R would turn a knob or something and the static would get louder and my leg would start to shake.  I’ve chronicled the experience in greater detail previously here:  https://djgourdoux.com/2012/01/23/happy-deep-brain-day/

This was me after the procedure:

dbs 5 years

When they were complete,  Dr. R. visited my wife in the waiting room and handed her this device,

20150115_232700

saying, “here’s the remote control to your husband.”

It was two weeks later that Dr. R. completed part two, the second  surgery, while I was asleep, when he installed a neuro-transmitter in my chest and ran the wires from it up my neck and to the electrodes installed in part one.   It’d be about a month later before my new Movement Disorders Specialist, Dr. Z, configured and turned on the transmitter, programming it to send impulses to my brain to trick it into thinking it’s getting the dopamine that Parkinson’s has taken away.  Since then Dr. Z has taken excellent care of me, tweaking and adjusting the settings of the transmitter according to what I am experiencing at the time.

About a year ago, Dr. R. was back, to perform a simple, out-patient procedure to replace my transmitter’s old battery with the new one.  Once again, I was awake and lucid as Dr. R and his team went about their business, answering Dr. R’s trivia questions as he played classic rock on the sound system, correctly identifying Ringo Starr as the drummer on Tom Petty’s “I Won’t Back Down.”  They must have had me on some pretty good happy anesthetic, because I remember enthusiastically singing along to that and other songs, which the two other people in the world who have ever heard me sing know I only do when under the influence of extreme amounts of alcohol , and that these two people carry with them deep emotional and psychological scars from the experience.  So my apologies to those in the operating room who had to suffer so – may your therapy be swift and effective.

Five years later I know what DBS has and hasn’t done for me.  It was never intended to be a cure for Parkinson’s, and it hasn’t alleviated the need for medications.  I still wear on and off, just less frequently and to a lesser degree than before.  There have been side effects, such as impaired speech and handwriting and balance; these are adjustable by changing the settings on my “remote control” device.  Essentially, if I turn the voltage down, the side effects are minimized while the wearing off periods increase in frequency and severity, turn the voltage up, and the peaks and valleys of the meds cycle is largely flattened out, while the side effects worsen.  I’ve learned how to balance these, and there should be sufficient voltage capacity and tweaking that Dr. Z can do to effectively manage these symptoms for a long time, even as the disease progresses.

Last October, I participated in a three day clinical study designed for PD patients with DBS installed.  For parts of the study, I had to go varying times with the transmitter turned off, and for most of these times, my PD symptoms were unbearable.  It served as a sobering reminder of what life would be like without having had this wonderful chunk of hardware installed in me.

 

“Gentlemen, we can rebuild him – we have the technology.”  Aside from the occasional involuntary hop whenever the toaster pops, or the overwhelming urge to walk backwards when I hear the beeps from nearby construction sites, my DBS experience has been overwhelmingly positive.  I want to thank the incredible team of doctors and specialists and nurses at Northwest Memorial, in particular Dr. Z. and Dr. R., for the care and attention they have devoted to me.  I am lucky and blessed that my experience with this rotten disease is navigated by such brilliant and good people.

 

 

Beyond


(I wrote this over the span of a couple of dark nights about three and a half years ago)

When I was a kid, as I lay in the hushed dark before sleep, I’d wait for the comforting sound of the furnace blowing warm air through floor vents, or for the familiar rumbling of a train in the distance. If I was lucky and tired enough, one of these sounds would come to me, and I’d fall asleep before they reached their conclusion.  If not, they’d be replaced by the murmuring voices of the nocturnal people who came to life in the silence of the night. From my bed I could hear them, unseen and distant, from under the floorboards and from inside the impenetrable blackness. I could never make out what they were saying, but I knew it was something dark and mysterious.

I didn’t like the voices. I’d pull the blankets up over my head and shut my eyes so I wouldn’t see any of them. As I listened, I’d convince myself that if I were to pull back the covers and open my eyes, they’d be there, standing motionless in the dark in my room, next to my bed, waiting for me to see them, and then they’d know, they’d know that I hear them, and neither they nor I could pretend the other didn’t exist anymore.

The voices would start out as a barely audible whisper, coming from the other end of the house. Uninterrupted by the sound of the furnace or a distant train, they’d gradually get stronger, from a soft murmur to a dull drone, steadily getting closer and louder, until they were in my room, above and around me. What syllables I could make out sounded like a strange and ancient foreign language, like they were speaking in tongues.

Eventually I’d fall asleep and the voices would be forgotten until the next night. This went on for a few years until I outgrew them and learned to put a chain on my imagination, until I learned to distinguish between the real and the unreal.

                                                            . . .

September 1981: Driving south on I-94 in my 1978 Chevy Nova, already rusting out from the big dent in the rear passenger side panel, with the setting sun painting the western sky shades of red and pink, I pass County Line road, highway KR; then highway E, before taking the off-ramp on Highway 142 and heading east toward Kenosha. I make my way to and then through the intersection with Green Bay Road, through the lights on 39th and 30th Avenue, until the red light forces me to stop and wait for the green left turn signal on the intersection with 22nd Avenue.  But I can’t wait; I haven’t been able to wait for over the past hour, from the time the last delivery truck finally pulled into the Open Kitchens loading dock off of Highway 20 in Racine. I couldn’t wait for that stupid truck to finally get in, and I couldn’t wait to finish unloading it, and I can’t wait now, as the left turn green arrow finally comes on. I make my turn, and then, as I turn left on 43rd street, the clock on the dashboard and the vanishing pink rays of twilight in the west and the headlights of the oncoming traffic and the streetlights that came on at some point between 39th and 22nd avenue all tell me it is about 7:00, and that September is nearly over.

We’ve been married now for about a month and a half, and she is waiting for me, like she is every night, and when I finish climbing the back stairs to our apartment and open the door, she’ll be there, with that indestructible smile and her open arms, and we’ll embrace. I feel a smile of my own form on my face. I am only 22 years old, but as my heart pounds out the exhilarating anticipation of coming home to her, I wonder if I can really be this deliriously happy, and I am aware of how ridiculously innocent and corny our love is, of how completely lost in her I have become, and I don’t care, because no matter how hard the cynic in me tries to point out how whipped I have become, I know it is real, more real than anything I’ve ever felt before, more real than the darkness, the loneliness,  the hunger, and the aching ever were.

. . .

March 18, 2011: It’s been a crazy day, on the phone with company lawyers and retrieving data for hours, making sure the test and quality environments are nailed down in time for UAT to begin on Monday, and that we have a strategy for implementing the vendor patches for the IRT application. At about 3:30, suddenly everything falls into place, all the fires are extinguished, and I take a breath for the first time all day. I clear my mind and read through those e-mails I haven’t had a chance to yet, and I feel myself relaxing. It is near the end of the day, but more than that, it is Friday.

Next thing I know, it’s a quarter past five.  I’m feeling pretty good, and I decide, with the office almost empty now, that it’s a good time to pack up some of my things. I go about gathering the old mementos, books, and knick knacks I’ve accumulated over the past almost 13 years. I go through old files and photographs. I don’t feel a lot of emotion – no sadness, no loss, no pain – rather I feel the warm and pleasant tug of nostalgia. I make a couple of trips out to my car, and I tell myself, I’m getting down to it, in a few days I won’t be seeing any of this anymore.   I won’t be walking up this stairwell to the back entrance, I won’t see the labyrinth of first floor cubicles, I won’t see the late afternoon sunlight on the parking lot and the pond. I tell myself this is all ending, I should be feeling stronger emotions, but I don’t. I can’t work myself into an emotional tizzy no matter how hard I try. Even though I have only four working days left, and even though this is the last Friday, somehow it still doesn’t seem real.

. . .-

August 1, 2011:  I take inventory of my physical limitations. My handwriting is no longer legible. My speech has deteriorated to the point that unless I am reading from a script and intensely concentrating, people have difficulty understanding me. When I am stressed or tired, tremors in my right hand and arm frequently occur, making it temporarily impossible to type on my keyboard or navigate a mouse. My meds are wearing off now about every four hours, and for about an hour, or about a quarter of the time, I suffer from the same stiffness and rigidity that occupied about half of my time before my DBS surgery.  I sleep on an average of four to six hours a night, still better than before the DBS but not the seven hours I was consistently getting a year ago.  I am off of work now, and take about an hour’s nap every afternoon.  I often stay up late, and do most of my writing at night, but I am always up before my wife leaves for work in the morning.

What the future holds, despite my constant speculation and conjecture, is beyond my ability to fully grasp.  I appreciate this, because I know that eventually it is going to get real bad.  When I try to imagine what it will be like, I try to imagine myself trapped inside a marble statue, unable to move or speak, and I can never really get myself there.  When my meds wear off and my living rigor mortis starts to set in is when I come closest to getting it, but even that is always temporary, and I can’t wrap my head around what it will be like when it becomes permanent, when the off periods finally overtake and eliminate the on periods, and what it will be like when the good days are all spent and gone.

I’ve been aware, maybe too aware, of the limited number of good days still left, and I’ve made many pledges and promises about how I’d spend them. I’ve tried my best to honor these pledges, but old habits are hard to break, especially when the old habit is life itself.  Life remains about 80% routine and tedium, the same routine and tedium that it’s always been.  It’s true that there is beauty and wonder in that tedium, and it’s true I have been able to see that more frequently since my diagnosis, but the nature of tedium is such that it just occurs, and that’s how it has to be, because it’s the tedium that gets us from day to day, and if we were to always stop and savor and celebrate the miracles in it all, well, we’d never get a damn thing done.

Now I am just a few months shy of my 53rd birthday, and it’s been over four months since I stopped working. Tonight I’m thinking about those invisible nighttime voices I heard when I was a kid. I write them off as the product of a child’s overactive imagination.

But if those voices weren’t real, I ask myself, what else have I imagined? What is real?  Did I really have a career as an I.T. Manager? Were all of those projects and deadlines and all that work and stress and all the triumphs and failures real? Or did I imagine it all? My wife is upstairs sleeping. Considering the mathematics of infinite time and space, did I really meet and love and marry my perfect soul mate? And she loved me, too? This is all getting pretty far fetched. The odds are incalculable.

Maybe Parkinson’s is the only thing that is real. Maybe in fact the thing I can’t imagine, the eventual imprisonment of my mind and soul in the statue my body will become, has already happened, and maybe everything I’ve experienced has occurred within my imagination. Maybe those voices I heard when I was a kid were the last echoes of the real, outside world, and maybe everything else, all the pain and suffering, all the love and beauty, the incredible and the trivial, has taken place inside my head, a rationalized universe of my own creation to get me through the nightmare that is reality. This would explain the combination of the unlikely and unreal that has been my life so far.

Maybe beyond the horizons of this world, beyond the walls of infinity, a catatonic middle aged man sits alone in a wheelchair in the dusty corner of an institution for the insane and demented. Doctors and nurses shine bright lights in his eye, and see no activity, no hint of recognition. But a flashlight can’t illuminate the universe, or the infinity that lies behind and beyond those eyes.

In the end I’ll have no choice but to let Parkinson’s take me wherever it will take me. As it progresses, as I deteriorate, all I am and all I know will fade away, and I will be taken beyond – beyond the physical, beyond the emotional, beyond the boundaries of sanity and imagination, beyond death.

And when I am taken away from my friends, my family, and especially my wife, I will be taken beyond this Heaven, real or imagined, that I have been blessed to spend all my days in.

Peaks and Valleys


I recently had an appointment with my Movement Disorders Specialist in Chicago to treat my instance of Parkinson’s disease.  She tweaked my Deep Brain Stimulator and gave me a wider range of settings to try.  The most interesting thing we’re trying involves a program she set up on one of the four pair of leads to decrease the frequency of the pulses but increase the voltage.  In other words, less frequent but stronger signals being sent to my brain.

The results so far have been interesting.  Many of my side effects, including voice and balance issues, have been much better.  At the same time, the meds I take are wearing off every three hours  compared to every four to four and a half hours before, and these “off” periods are hitting harder. Up to now, my “off” periods would slowly and gradually take hold, announcing their presence first in my toes and fingers and slowly moving over my entire body.  Now, it’s like a light switch being turned off, as literally one minute I’ll be fine and the next any movement at all is difficult and I am slowed to a nearly inanimate state.

So I’m learning how to deal with these new settings.  The good part is that during my “on” cycles, my peaks, while shorter in duration than before, are higher than they were, while the bad part is that I crash down harder and faster in the valleys of my “off” cycles.

Peak:  There are trade-offs, and today I was able to use my improved voice to appear on my writing group’s radio show, which I’ve been avoiding in recent months.  Today not only was I able to read a short piece I’d written, I was also able to conduct an interview with one of my favorite writers, Michael Perry.  For a half hour, we spoke about writing, and it was great, we talked and we listened to one another, and it was incredibly gratifying to have a conversation without having to worry about my ability to articulate and be clearly understood. I immensely enjoyed every moment.

Valley:  Tonight my wife and I were playing Scrabble and having our normal great time, when I crashed into a bad off period.  Suddenly, I couldn’t make my fingers work to reach into the little bag and get my letters.  She had to help me, which she did with her usual grace and good nature, and it wasn’t a big deal, because she is so good at preventing things from becoming a big deal.  But I’d be lying if I said that at least on some dark and deeper level it didn’t bother me.  The game was nearly over, we finished and spent the rest of the valley watching the Brewers lose again.

Peak: A couple of hours later I’m straightening up my office, with music playing, Frankie Valli singing “You’re just too good to be true,” and Tucker, our ten month old English shepherd puppy is lying on the floor, and I’m feeling so good I start dancing and lip synching “at long last love has arrived, I thank God I’m alive.”  Tucker looks at me and tilts his head in confusion.

Valley:  My wife is showing me some decorating she’s doing in our bedroom, and she is so animated and content that I am overwhelmed by how much I love her, and the lyrics “you’re just too good to be true” come back to me, and I realize that she is the truest thing I know. The past thirty four years we’ve been together flash in front of my eyes, and I see us as we were then and I see me as I am now and it takes all my strength not to burst into tears.

I used to get angry when I’d think of what this damned disease is doing to me and what it’s taking from us.   Lately, I just feel sad, and that worries me.  I want my anger back, I want to be able to tell my PD to go fuck itself.  There is strength in anger, and weakness in sorrow. I want to be strong again.

I need to work at that.

Today


Today was a good day.  I felt pretty good most of the day, and my wife was off work, so we were able to spend it at home, together.   The weather was beautiful – sunny, a little cool for July, and dry.  We were both up by 6:30, and spent the first couple of hours waking up and reading, coffee and toast for breakfast.  I did my daily Parkinson’s disease stretches, and by 9:30 I was moving pretty good, and I went outside.

First, I took the empty gallon iced tea jugs I’ve been saving out to my workshop, and funneled the old used motor oil I had lying around in various containers into them.  Two or three more empties and I’ll have all of my old oil accounted for, and I’ll take it in to the recycling center the village has established.

Then I put the new tire I’d bought at the True Value store a couple of days ago on the wheelbarrow, replacing the old one that wouldn’t hold air anymore.  Then I weeded my vegetable garden while my wife weeded her flower garden.  Tomatoes are starting to come in.  That’s exciting.

Then I burned some brush, some yard waste we’d accumulated over the summer.  It was the second of four brush piles we’ve burned; the other two are probably still a little bit too green to burn just yet.

I emptied the garbage can in my workshop into the main can we take to the curb on Tuesdays.  It was pretty full, it was past time I remembered to empty it, so that’s taken care of.

For dinner, I grilled out, bratwursts, a true Wisconsin delicacy.  We ate, then my wife worked some more in her flower garden, while I read.  We came in, she gave me a much needed haircut, and we played our nightly game of Scrabble (she won – AGAIN).  Now it’s 9:30 and getting dark, and I’ll try to get an hour or two of writing in before I go to bed.

Tomorrow, Deb goes back to work, I tutor for the literary council in the afternoon, and I have a meeting with my writer’s group tomorrow night.

This may all sound pretty routine and boring, but for me, it’s as good as it gets.  I love days like this, when I feel good enough to get some jobs, admittedly small jobs, done and crossed off of the list.  I know it’s a fraction of what I used to do every day, but I also know I can’t do most of those things anymore.  And to be honest, on some of the days that aren’t this good, the bad days, I sit alone most of the day and brood about that.

It’s more than coincidence that my wife was home and that I had a good day today.  There’s a definite correlation.  It’s not that we did anything special together or even left the yard.  It’s the fact that she is here, near to me, that matters.  It’s the comfort I take in her presence, looking out the window and seeing her in her flower garden, and showing her the green tomatoes coming in in my garden that means so much to me.  After 33 years together, we’ve become more than best friends, more than partners, more even than soul mates.  We’re tied to each other, inextricably linked.  We are companions.

While the number of good days left slowly counts down and diminishes, the appreciation and enjoyment of each one increases.  Days like today are truly remarkable and meant to be treasured.  The sun  on my face in my backyard, the sound of the breeze through the trees, the feel of a wrench in my hand while tightening the bolts on my wheelbarrow, and the image of my wife in the midday golden, green,  and red of her flower garden, are all more perfect than anyone can ask for.