The Good, the Bad, and the Crummy

One of my favorite paintings is Christina’s World, by the great American artist, Andrew  Wyeth.  For years now, a reproduction of the painting has hung on my living room wall.  The subject of the painting is a middle aged woman, crippled by polio, who Wyeth observed crawling to her neighbor’s field.  The painting always had an impact on me, the composition that Wyeth uses to dramatically heighten the vastness of the landscape, the absence of trees, the empty sky and the weathered buildings, and the woman, somehow both small and large, dominated by and dominating the landscape at the same time, with her withered arms and twisted feet and faded pink dress.

These days, when I look at the painting, I am reminded of my own experiences with Parkinson’s Disease.  I don’t mean to imply that I am anywhere close to the severity of Christina’s polio.  But I recognize the position Wyeth stages her in, leaning on her side, her arm bent under her, as the same position I find myself in when trying to roll myself over in bed, particularly in the morning, when it has been several hours since I last took my meds.  Everything is slow, from getting dressed to eating to taking the garbage out, and is only getting slower.  So I can relate to crawling across an open field.

If I had to summarize my current condition, I’d divide the days into three categories:  The good, the bad, and the crummy.

The good days are still the vast majority.  On the good days I feel pretty good most of the day.  The “off“-periods (times during which the effectiveness of my medications is wearing off) are four or more hours apart, and when they hit, they aren’t too bad.  On good days, my episodes of daytime fatigue aren’t too bad, usually hitting in the late morning, and a half hour or so sitting in my recliner, awake or asleep, seems to adequately re-charge me.

The bad days are the days when the wearing off occurs more frequently, sometimes as frequent as every three hours, and are more severe.   At their worst, my entire body is overtaken by a discomforting rigidity, or stiffness.   At these times I shuffle more than walk, and at the very worst, every movement, no matter how minor, is very difficult.   This is how I wake up most mornings, and getting dressed, particularly bending over and putting socks on, can take several minutes.  If I’ve eaten too much or the wrong things since I last took my meds, my wearing off periods are accompanied by stomach nausea and/or severe acid reflux.  On the bad days, the fatigue persists, and becomes incapacitating.  The bad days typically occur a day or two after doing something physical, after overdoing it.  There is also a greater likelihood of loss of balance during these times.  I’ve had four falls during the last month.

I built a wooden compost box for my wife’s flower garden, to generate good planting soil.  She puts yard waste, coffee grounds, egg shells, etc. A few days ago, while moving the new box into place next to our barn, I leaned too far forward and fell over the side and right into it. It took me about five minutes to get myself up and out. Another time, about two weeks ago, I was in a public men’s room at a gas station, urinating, when, as the trickle slowed down, I moved forward a bit and apparently had my head bent too far forward. I felt myself falling forward, right over the toilet – fortunately, my head broke the fall, smacking loudly into the wall – I put a small dent in the drywall but didn’t break through.

The scariest fall happened the day before yesterday.  I was carrying an armload of dirty laundry down the basement when I lost my balance and fell hard down the last three steps.  The scary thing about these falls is you can feel yourself losing your balance, it’s like it’s in slow motion, but you can’t get your arms or hands up quick enough to brace yourself.   I was lucky in that I only wrenched my right knee, it could have been a whole lot worse.  But, of course, the next day not only did my knee hurt, but the off-periods were more intense because of it.

I’d estimate that currently the good days outnumber the bad days by about three to one.

Then there are the crummy days.  A good day or a bad day can also be a crummy day.  Crummy days are the days when I think about my condition, days when I realize how bad the bad days are, and days when I realize that even the best good days aren’t as good as the most average run of the mill days prior to my diagnosis were.  The crummy days are the days when I realize how much I’ve declined, and how much worse it’s going to get.  I also feel, on the crummy days, an incredible sense of isolation, and that I am, like Christina in the painting, a solitary figure in an empty landscape.  In short, the crummy days are days when I feel sorry for myself.

I don’t have too many crummy days.  I normally try to stay positive and keep them at bay.  But I’d be dishonest if I said they didn’t exist.   I think it’s important to do whatever one can to minimize the crummy days, and I think it is equally important to recognize they can’t be completely avoided.  I think it’s important not only that I understand this, but that the people close to me do, too.

I’ve written a great deal about the new perspective I’ve gained since having Parkinson’s and the new found appreciation of every day miracles I never noticed before.  These things are true and real, and they bring me comfort, but in the end, one thing above all remains true:

It sucks to be sick.

Same Old Disease, New Friends

(Note:  Names are not shared so that privacy is protected)

Tonight I attended the second get together of a “social group” (for lack of a better term) for professionals with young on-set Parkinson’s disease (I had to miss the first one due to a prior commitment) at a nice Italian restaurant in Waukesha.   The idea of the group came from a guy I met at the Wisconsin Parkinson’s Association symposium last month.  His idea was to bring together young on-set P.D. patients who are or have been professionals in the work place.  This would be different than the support groups many of us are members of, as it targets a more narrow audience, and in that the intent is to hang out and do things together.   The support groups are great and necessary, giving a diverse audience a chance to trade notes and share experiences with the disease, and to pass on vital information about the disease to both patients and care givers.  This group promises to be something a little bit different, as we discussed ideas for future get-togethers like pub crawls, concerts and Brewers games.  The idea is that we get out with people we are comfortable with and do things together.

It was a great night.  I got to meet some very interesting and nice people, all young onset patients (One of the nice things about having PD is that, at age 53, it is one of the last demographics where I am considered young).  There was the former member of the Milwaukee Symphony Orchestra and graduate of Julliard who is looking to writing as an alternative to playing music, there’s the 22 year old student teacher, there’s the former computer programmer who only recently quit working, and the organizer of the group, a director of HR for a Milwaukee architecture firm.  Talking with them, I found I had something in common with each of them besides Parkinson’s, and, here’s the important part, I found them all to be vibrant, positive minded individuals who are looking forward to filling the next chapter in their lives with their passions and interests.

This is so important, because the natural tendency for people with PD, especially us young folks, is to withdraw and become more isolated, to become a slave to the disease and its slow parade of diminishing physical capabilities.  It’s a great thing to be able to get with people of a similar age and background and compare notes about the disease, but it’s even more important and downright inspiring to know that the ability to dream and the will to pursue those dreams perseveres.

I’m coming to the conclusion that there are two vital components to life, two elements that make getting up in the morning worth the trouble, whether you have PD or not.  One is the capacity to dream.  The other is a sense of community, the ability to connect and identify with other humans, and to share and honor their dreams.   Parkinson’s is an insidious little bastard that slowly steals physical capabilities and, if you’re not careful, if you don’t have a community to belong to, it’ll also rob you of your hopes and aspirations.

I look forward to deepening the new friendships I am making and the journeys I hope we will share together. Thanks to the organizers of this group for getting us together.

I Am Smoke

(I should probably explain – this is an attempt to describe a dream I had after a frustrating day with Parkinson’s.  In the dream I was literally smoke from a fire, moving freely through the air.  I’ve had a few of these dreams now, usually on my more rigid days, and they always feel wonderful)

I wake in the diminishing daylight and I am smoke, rising from red burning embers in a campfire in an open field on the top of a high ridge.  I rise higher and higher above the red and blue flames and the white hot coals, leaving the warmth of the fire and floating on the breeze, feeling the chill of the late afternoon air, above and over the trees, carried on the breeze, dissolving into the wind, until I melt into and become the wind, making the leaves on the trees tremble and shake.   I move out past the ridge and over the river, pushing small blue lines that silently glide across the water.  The trees that line the water’s edge are leaning and bowing in silent deference to me.   I lift dead leaves from the ground and breathe life into them, making them dance in the cool air.  I make flags wave and I whisper through pine trees.    I am silence and grace, I am young and old, I am familiar and comforting, and threatening and foreboding.  I am life and I am death.  I am the sum of my contradictions.

I find her, working in her garden, and I wrap myself around her.  She bundles her jacket tight around her shoulders as I move through her hair, lifting and caressing it, until she turns around, and I caress her cheeks and I fill her lungs. I brush her skin and make goose bumps rise.  I taste her and she tastes me, and she becomes fire, ignited by my breath, and I am the smoke she exhales from her red and blue flames.

Him and Her

(My thanks to Robin Rhodes, who hosted a wonderful workshop in tonight’s Kenosha Writer’s Guild meeting that gave me the prompt for the following little tidbit)

Even when we’re not lost, she wants to get the frigging map out.   Have I ever gotten us lost?  We’ve been married for over thirty years; you’d think she’d understand by now that my internal compass is pretty damned good.

He never stops to ask for directions, and he gets pissed off when I get the map out.  He always tells me that in over thirty years, he’s never gotten us lost, and that’s true.  But how can I tell him that he’s slipping, he’s not as sharp as he used to be?  Just the other day, he couldn’t remember Zach’s name, and all those years he was over here with Nick, all those years he coached their softball and basketball teams, it’s not like him to forget anything, let alone a name like that.

I try to be patient with her.   I know she’s been through a lot.  But come on – a map?  When we’re still on the interstate?   What is she afraid of?  What’s the worst that can happen?  We take a wrong turn?   We end up in a bad neighborhood?   We’re a couple of minutes late?   That didn’t seem to bother her when she had to have her coffee this morning.  I always try to tell her, leave room for contingency, it’s better to get there a few minutes early than late.  But nothing can break up her morning routine.   The world might be on fire, but it’ll have to wait until she’s had her morning coffee.

He’s so damn fragile.   I get tired of having to tiptoe around his feelings all the time.  I know that he’s in a rough spot.  He doesn’t want to admit he’s deteriorating.    He tries to hide it.  But I see it all the time.  Usually I don’t say anything, but it’s there.  It’s in the way he walks, the way he’s always crashing into walls and the look on his face when he hopes nobody notices.   It’s in his voice, and in the times I have to ask him to repeat himself.   It’s in the stuttering, the stammering, it’s in the soft and unintelligible syllables.

She knows how I hate being late.

We’ve been together for over thirty years now.   He still makes me laugh.   It hurts me to see what is happening to him.   But he is still a good man.  I still believe in him.  

Sometimes I suspect she is writing me off.  Like when I say something and it comes out garbled, and she’ll nod her head as if she heard me, as if she could understand me, because she gets tired of asking me to repeat myself.  And most of the time, when I get the nod, I’ll silently accept it, even though as a response a nod has no connection with what I was trying to say, and I’ll just let it go, because I know how frustrated she gets having to ask me to repeat myself.

We’ve built a world together, and it’s comfortable, it’s home. 

I guess it’s inevitable that she would look for signs of my decline.  Hell, I look for them, too.  But I think she’s looking a little bit too close.    If I trip over the shoes our daughter left in the middle of the living room, in her mind, I’ve lost my balance, and she accepts it as further evidence of my slide.

He can’t ask directions, he gets pissed off when I get the map out, because he doesn’t want to admit that he’s lost.  And he doesn’t want to admit he’s lost because he’s never been lost before, and he’s afraid of what that means, of what else he might have to admit.  But we’re all going downhill – after all, he is 53 years old. 

I look at her, and I see the same eyes, the same face that I’ve known, that I’ve loved, for more than 30 years now.   I look in the mirror and I see a bald guy with a big gut staring back.  But that bald guy in the mirror is still me, and I still have the same internal compass that all those years ago led me to her.

I don’t want to dwell on things.  He knows that no matter how bad things get, I’ll always be by his side.  I shouldn’t have to tell him this – the past thirty years speak for themselves.  

I guess when you get right down to it, the truth is, the real reason we haven’t gotten lost in all these years is that we’ve navigated the road together.   When we started out, neither one of us had any idea where this journey would take us.   But here we are, after all the twists and turns, the bumps and detours, still riding together, and as we coast down the darkening highways to our uncharted destination, if she thinks a map will help, who am I to question?

Parkinson’s and Grief vs. Self Pity

“Grief is a process where nothing remains the same, even the big stuff, and none of it, sadly, fits back inside that old, comfortable box.”   – Peg Rousar-Thompson

 A few years ago, fearing that I may be suffering from the depression that is common with Parkinson’s disease, I went to a therapist for a brief time.   This was about the same time I had started to write, as a way to fill the hours I suddenly found myself awake for in the middle of the night.  After a few sessions, the therapist and I agreed that I wasn’t depressed.  If anything, I may have been suffering a slight case of anxiety, and by writing I was probably already engaged in the most effective therapy.

Our time together was extremely helpful anyway, if only for a very revealing exchange early in the first session.  I was trying to explain what I was going thru, when I said “I don’t want to sound like I’m feeling sorry for myself, but …”

She stopped me in mid-sentence.  “Why don’t you want to feel sorry for yourself?”

I stuttered and stammered, when she said, “Why wouldn’t you feel sorry for yourself?  You’ve got Parkinson’s disease.”

I was stunned.   It’s not that I hadn’t felt sorry for myself before; I had, plenty of times.   After all, I was only in my mid 40s when I received my sentence, my diagnosis.  It’s just that it hadn’t occurred to me it was okay to feel sorry for myself.   I think this was when I started to understand the difference between grief and self-pity.

They say then that one of the first things people go through after being diagnosed with Parkinson’s is a period of grieving, or mourning.  I think this is common for the diagnosis of any chronic disease.  Suddenly you are flawed, and the image you held of your future self is dead.  With a sentence of Parkinson’s comes the awareness that things are going to be different now, and that the days still left will be days of diminishment and loss.  It’s only natural to grieve for these losses.

There are also the expectations of how one is supposed to behave under these circumstances.  To understand these, one only needs to stand in the line at the supermarket and read the headlines of the National Enquirer.

One of the stories the Enquirer has been most successful with over the years has been the famous celebrity stricken with a terminal disease.  The story always follows a similar arch – how tragedy strikes when least expected, often times just as the celebrity has finally found some peace in their life, then on to the courageous and inspirational struggle, complete with some short-lived triumphs, followed by the shocking photos of how the once-beautiful icon we all remember has decayed once that struggle goes south, through to the brave final days, followed by death and memorial.  These stories are as sadly predictable as they are inevitably true –whether it’s Patrick Swayze, Christopher Reeve or all the way back to John Wayne.

The reason these stories sell so well is the meaning we derive from them.  It’s the same story that we see played out amongst those we’ve loved and lost.  Whenever someone close to us is sentenced to a prognosis of a terminal or incurable disease, we react the same way the Enquirer acts – we rail against the senselessness of it all and then take inspiration from their “brave” fight or their “positive attitude”.   It’s all a part of our attempts to find some meaning, to make some sense out of what appears to be evidence of the chaotic randomness and fundamental meanness of existence.  It’s the same reaction to the awareness of our own mortality that drives us to the belief in an afterlife and the creation of personalized images of Heaven.

Then comes the time when this “senseless” and “tragic” fate becomes our own life sentence.  Having seen this story play itself out countless times before, it informs the expectations we have of ourselves, and also the expectations of those around us. It doesn’t take long to realize what a burden these expectations add.  And, if we stop and think about it honestly, we’re surprised to admit how much importance we place on how we are perceived by others.

In the first days after being diagnosed, I promised myself I’d approach my newly defined fate with courage and dignity, resist the urge to ask myself “why me”, maintain a good attitude, and make the best of my remaining good time.  This sounds great, but in reality, I was a wreck, completely overwhelmed by and obsessed with my condition.  I anguished and brooded over the appearance of every slight symptom, such as the subtle and constant presence of a small amount of saliva inside my right cheek, attaching levels of importance to them that now seem laughable.   But the zenith of my self-absorption was reached when I realized how impatient I had become to having to listen to the seemingly insignificant problems of friends and co-workers.  As I half listened to them, I found myself thinking so you’re going through a divorce – it could be worse, you could have Parkinson’s – so you have advanced Rheumatoid Arthritis – at least you don’t have Parkinson’s like me.  I finally listened objectively to myself and realized what a pathetic self pitying ass I had become.  First, it was so early in my diagnosis that the disease was little more than a minor annoyance, and second, I realized that just because of my so-called personal “tragedy” that the rest of the world didn’t stop, and there were still real people out there with real problems, living real lives.  This may sound painfully obvious, but it came to me as a major epiphany, and jolted me at least partially out of my dark clouds of self-absorption.  Unfortunately, I landed in the even darker and more dangerous clouds of denial. 

This denial was manifested in my approach to work.  I found myself in charge of a large project that wasn’t going well, and, in fact, needed to be halted and re-evaluated.  But I was going to be damned if I let that happen, and, despite having an hour long commute at the time, I was the first of my team in the office in the morning and the last to leave at night.  I invested so much of my time and energy that when things didn’t go well, which they most frequently didn’t, I’d find myself awake at 2:00 AM on my laptop working until 4:00 A.M.   This was at the same time I was early in my diagnosis and my neurologist was attempting to determine the right mix of medications. The primary drug in the early stages is any one of a variety of dopamine agonists, drugs that are intended to trick the brain’s dopamine receptors into thinking they are still receiving signals even though Parkinson’s has destroyed the transmission.  These drugs can have significant side effects, and only through trial and error can the right dosage of the right medication be determined.  Chief among the many potential side effects of dopamine agonists are sudden and frequent attacks of daytime drowsiness, and feelings of dizziness and nausea.  I remember on several occasions, shortly after taking my morning dosage of Mirapex, the first dopamine agonist subscribed for me, shutting the door to my office and putting my head down on my desk and closing my eyes, waiting for the room to stop spinning.   This plus the daytime drowsiness that was already evident by short nights of sleep and an hour long commute made for a bad time to be in denial.  

Then came the inevitable moment that the project, despite my best efforts, reached what in hindsight was the only logical conclusion it could have reached:  it was cancelled.  My reaction was devastation and depression, and, after a couple of weeks when I was finally able to put some distance between the project and myself, I realized was about more than just the project’s cancellation.  I realized that all the work, all the stress, all the obsessive attention I paid to it were ways of not thinking about Parkinson’s, and I realized that not only was I in danger of working myself to an exhaustion that had no possible good ending, I was also spending months of valuable time obsessing over something I had no control of – as a means of not obsessing over something else I had no control over, that being Parkinson’s.

So if self pity was turning me into an unfeeling and insensitive ass, and denial was threatening to kill me, some kind of balance needed to be reached.  This is where the therapist helped me, and when I think I started to understand the difference between self pity and grief.

Grief, I think, is a natural and healthy response to loss.  It is the questioning of how and why, and even when the answers that come may not be satisfying, maybe aren’t what we want to hear, it is a necessary component of finding the truths buried within our losses.

Pain is a byproduct of loss, and self pity is a natural response to temporarily dull the anguish it causes.   But wallowing too long in self pity is to treat the symptom but not the disease.

When I started writing, I understood none of this.  I was just trying to find my way through the darkness of those sleep deprived nights.  I still don’t understand much about pain and loss and grief and self pity except, I think, that each are naturally occurring phenomenon and need to be dealt with.  I now understand that writing was and is, for better or worse, my way of dealing with these things, and, it turns out, of dealing with just about everything else.  I now find myself compelled to write, usually without understanding why or what the Hell I am trying to accomplish.

Writing has at least provided me with a mechanism for framing some of the questions – whether I eventually stumble upon any answers remains to be seen.  I make no claims about the quality of my writing and have no illusions about uncovering any profound truths – heck, half the time I am challenged to put even one coherent sentence together – all I know is that, for now, at least, this is what I do.

Happy Deep Brain Day

Getting nothing but static/Getting nothing but static/Static in my attic                                                                       – The B-52s                                          

This past Saturday marked the two year anniversary of the most surreal event I have ever experienced – the implementation of electrodes in my brain in part one of the procedure known as Deep Brain Stimulation, to treat many of the symptoms of my instance of Parkinson’s Disease.

Two years later, I have a better understanding of what DBS has and hasn’t done for me.  First and foremost, it has been a wonderful blessing, smoothing out many of the peaks and valleys that were, prior to the surgery, becoming more and more debilitating.   I sleep better and longer at night.

There have been some side effects from the procedure, and some symptoms of the disease that it is apparently unable to address.  The side effects include impacts to my speech and my handwriting.  Frequent and severe and sudden episodes of daytime fatigue still hit me, and I have to be careful if I am driving. Stress exacerbates other symptoms, including tremors that make working a computer keyboard or mouse temporarily impossible.  Because of these symptoms, primarily the fatigue (and repeated episodes of falling asleep in my office and behind the wheel on the drive home), I no longer work.

But make no mistake about it – the DBS has been a success, and I would recommend it to anyone in a similar state.  If it wasn’t for the improvements DBS gave me, I would have stopped working well over a year before I did, and I’d be unable to do the things that give me great joy now, especially writing.

So to mark the occasion, I went back and looked through journal entries and notes I have written over the past two years about my DBS experience.   Here are some excerpts:

Thursday, January 14, 2010:  I wake up and I am half sitting up in my hospital bed in a large room.  The heavy metallic frame that was screwed into my head earlier in the morning has been attached and locked into some larger metal base that I can’t see.    I can hear the usual blips and beeps of hospital equipment, plus a low hum of static.  It’s chilly in here, and there are people in scrubs milling about.  One of them notices I am awake, and the next thing I know my neurosurgeon, Dr. R., is in front of me, and he tells me the static I hear is in fact my brain talking, the impulses it creates converted to audio, and that they’ll be listening to it and talking to me as they prepare to install the first set of electrodes..  The fact that my brain waves sound like static is somehow not surprising to me.

 …   I wonder, as they are poking around in my brain, if they see anything that surprises them.  I have had dreams where they open my brain to find, undetected by the MRI and CAT scans, discolored sections that are rotting and stinking with gangrene, or that large populations of maggots or insect larvae are happily thriving up there, having eaten away a good chunk of my grey matter.   The thought of scientists poking around in my brain and finding the secrets locked inside is intimidating enough – what if, behind that curtain, they have a television screen that is hooked up to my sub conscious to display what is stored there?  What if they could see all the women I had secretly lusted for over the years, or those dark secrets I had hidden from the world, like the time when I was a kid and ate the last of the package of Oreo cookies, only to blame it on my little sister?   What if they poked around up there and realized that this brain, substandard and inadequate, isn’t worth the effort?

 …  Every Parkinson’s patient is familiar with the concept of “on” and “off” periods.   “On” periods are the times when the medications are working and symptoms are minimized, “off” periods are the times when the medications have either worn off or haven’t kicked in yet, periods of time when the symptoms are most exacerbated.  The primary medication for PD patients is some form of Sinemet, or a combination of carbidopa and levodopa.  For me, at the time of the DBS surgery, I was taking a 200 milligram dosage of Stalevo (a dosage of 50 milligrams of carbidopa  and 200 milligrams of levodopa  and 200 milligrams of entacapone) every three hours, with the “off period” beginning about 45 minutes before I’d  take it and lasting until about 45 minutes after, meaning that for every three hours, close to an hour and a half, or 50% of the day, was spent in varying degrees of being “off”.  These periods would usually announce their beginning with a very slight tingling in my toes, followed by the rigidity that would slowly spread until it inhabited every inch of my body.  By the time of the surgery, at the peak of these off periods, on the worst days, the resulting discomfort would become unbearable.   Even at its peak, my rigidity isn’t the sharp and agonizing pain that people with Rheumatoid Arthritis, for example, feel; rather it’s an all encompassing discomfort from which there is no escape.  It feels like what I imagine rigor mortis would feel like, like you are turning to stone, like you are being converted to a living statue of yourself.  The natural reaction to this discomfort is to seek a position that will ease it, by either sitting or lying down or shifting your weight one way or another but you soon realize these attempts are futile, and all you can do is take your pills and wait for them to kick in.  For me, it got to a point at work where, at the time of the surgery, I’d wander from my downstairs office upstairs to the nurse’s station and lay down on her bed in the back, not because it made me more comfortable but because I was out of view of the public there and could shuffle and squirm in privacy until the pills started to kick in.  At the time of the surgery, I was hitting the nurse’s station two or three times a week.

  During these rigid off periods, when walking, my gait would become a slow and unbalanced shuffle.   During my on periods, I walked pretty normally.  I wondered with some amusement what those workers in other departments, who didn’t know me or my condition, would wonder when I would shuffle past and then, an hour or two later, walk by normally.  “He must be hitting the bottle again”, I imagined them saying to each other. 

 …   November was spent making sure everything healed from the salivary gland surgery, and in December I started testing so the DBS could proceed in January.   I had consults with my neurosurgeon, the extremely likable Dr. R.  He has a great sense of humor and comes across as a regular guy, someone I’d enjoy having a beer with at some neighborhood tavern.  Of course, the guys I usually have a beer with are the last guys I would want operating on my brain.  He is a transplanted New Yorker and an avid sports fan.   The morning of my surgery, he came in my room and visited me, and Sports Center was on the television.  With the impending procedure just a couple of hours away, we briefly talked football and baseball, about the (football) Giants and the Yankees, just like we did the night before when he stopped in my room and checked on me.  I remember thinking, this guy is just like me; we have a lot in common, and on some level found this to be disturbing.  My preconception of a brain surgeon was some genius scientist whose own brain was filled with too much brilliance and eccentricity to have time for such trivial pursuits as sports.  I know the limited capacity of my brain is overflowing with stats and figures and opinions related to batting averages, earned run averages and completion percentages to the degree that I can’t remember to take the garbage out, let alone differentiate between the basal ganglia and the substantia nigra.  The night before the surgery, as he left my room, I suggested that he spend the night in a Holiday Inn Express.  He laughed, which I found disappointing, meaning he was familiar with the television commercials I was referencing.  Truth be told, he’s a good guy, and I felt comfortable and at ease with the idea of him poking around my brain.

  The night before, after Dr R left, I took the last of my allowed dosage of meds at 9:00 and quickly fell asleep.  As usual, my meds wore off after about three hours and I woke up around midnight.  This was the time I’d normally take my nighttime Sinemet tablets, dissolvable and quick acting, and eventually fall back asleep.  However, for the surgery, it was required for my system to be clean of meds, so there would be no nighttime tablets.  I was unable to fall back to sleep and spent a very rough night awake and uncomfortable with nothing to do but watch television and twist and turn in my hospital bed for six and a half hours, and wonder and worry about the next day’s proceedings.   Prior to the salivary gland operation, the only operation I had ever had was minor surgery for a torn meniscus on my right knee.  I remembered that before they put me out, someone took a black sharpie and marked a big “X” on my right knee, so they didn’t operate on the wrong one.  I wondered if, in preparation for to the DBS surgery, they would put a big “X” on the top of my skull, as over the years the precise location of my brain has been an object of frequent speculation, with some convinced it was located somewhere on my backside, and others certain that I did most of my thinking with another, more private part of my anatomy.

 The big day began promptly and on schedule at 6:30 A.M. this morning.  The first step was to have Dr R.’s team of residents admit me and shave the parts of my head that were not already bald in preparation for the surgery (suffice to say at this point in time they were ahead of schedule).   Next was the installation of the metal frame, which I had understood to be like mounting a large vice grip to my head.   They brought the device out and it looked exactly like I expected it to look, and they plopped it on my head, with one of the residents leveling it, and another marking spots in my forehead and in the back of my head to clamp it on.  It is at this point we must pause to reflect on how far modern medicine has advanced, and the many miracles that have been achieved by technological and scientific advances, making most procedures as painless and sensitive to the patient’s experience as possible.   This procedure unfortunately is not to be included in that category, as the device and the technique to install the frame apparently remains unchanged from when first introduced by the either the Marquis de Sade or the grand inquisitor.  It begins with them prepping the areas with a shot of Novocain – and, just like when you go to the dentist, you are left wondering if the shots of Novocain are actually more painful than the resulting procedure would be, as it involved a resident sticking a needle into four points in my skull and shooting the Novocain in.  Then they put the frame back on (which was heavier than I had anticipated) and it was time to clamp the device to the head.  Just like a vice grip, as one resident held the frame in place, another began screwing the clamps in until they were to meet the points where the Novocain had been injected.  It didn’t take me long to realize that these weren’t the type of clamps I used in my workshop when doing wood working projects, what the resident was screwing in were actually spikes that would penetrate skin and skull – I know this because not only could I feel them penetrating my cranium, I could also hear the sound of skin tearing and skull breaking – and as the first one was installed, I hunkered down thinking, only three more to go, by the time they get to the other spots, the Novocain will surely have kicked in more – take comfort in the fact that the brain is capable of these rationalizations, just don’t expect them to be true – each of the four spikes was in fact more painful than the others. 

Then they wheeled me down the hall for one last CAT scan, where they lifted me off of my bed onto another bed that had more metal attached to it.  They positioned my head so that the metal frame latched in with the frame on the other bed (it loudly clicked and locked into place), then wheeled me back to a waiting room, where, with the frame now firmly attached, I was allowed to visit with my wife and the anesthesiologist, who explained to me how they would be putting me out and bringing me back during the day’s events, which would likely last until 3:30 or 4:30 PM  (it was just after 7:00 now).   While I was having these conversations, Dr. R. and his team were looking at results of the CAT scan and a brain MRI that had been taken five days earlier and planning out the procedure, figuring out where to open my head up and install the electrodes that would act as receptors for the neurotransmitters that would be installed later.  Then they were ready and began rolling me to the operating room, asking me to count backwards from 100 or say the alphabet backwards or recite the Gettysburg Address backwards or whatever they asked, I don’t recall, as I was already out. 

Next thing I know I’m awake in the operating room, listening to the static my brain is broadcasting as Dr R. and his guest star neurosurgeon complete the task of installing and testing the electrode and associated leads in the right side of my brain.  This goes on for a couple of hours, and as I sit there awake and the anesthesia gradually wears off, I become aware of the pain in my head, which is becoming more and more unbearable.   At some point I actually start moaning.  “Almost done, bear with us”, Dr. R. promises several times, and when he finally tells me that he is done with the first side and they start putting me under again, I am happier than ever before.  

Then I am awake again.  They are ready to do the other side.  Now I know what I’m in for, and the novelty of being awake while someone is poking around in my brain has worn off.  I’m thinking there is no way I can go through this again.   The pain is there almost from the start.  Fortunately, and to the pleasant surprise of even Dr. R., they are able to very quickly isolate and find the second spot and implement the electrode, and when they put me out for the last time, it’s 1:30 in the afternoon.   I’m about two hours ahead of schedule.

I wake up a couple of hours later in ICU, where my wife is waiting for me.   I proceed to spend a long night in ICU drifting in and out, but by Friday morning I have most of my wits about me.  Aside from the incredible pain in my head, I feel pretty good.  My head is bandaged up so that I look like, as Dr. R. describes, a “human q-tip”.  By Friday afternoon the pain in my head quickly subsides to the point that I stop taking pain medication.  Late Friday I’m moved out of ICU back to my regular room.        

Saturday morning they remove my bandages.  I’m startled by the size of the scars and the number of staples in my head.  By 1:00 I’m free to go, resting comfortably in the front seat of my Prius as my wife navigates the hour and a half trip to our home in Pleasant Praire, Wisconsin.

DBS Part one is complete, and I now have two electrodes implanted in my head.  Two weeks from now, in DBS II, the sequel (“just when you thought it was safe enough to go back in your brain”), they will run the wires under the skin down to a point in my chest, where they will install the neurotransmitter that will eventually send the signals to my brain that will drown out the noise created by Parkinson’s Disease and minimize if not eliminate my symptoms for some period to come.  I am sore, but I am optimistic and eager to reap the benefits of this surrealistic experience.

End of Season

I stood on the ridge, in the dark and damp grey of the late November afternoon, holding the little folding camouflaged chair I had been sitting on, when it started to rain again.  This time it came down steady and hard and rhythmic, drowning out all other sounds the same way the oppressive grey clouds had muted the few remaining colors that November had been unable to kill.  I stood there, in my blaze orange hunting coat, my rifle in one hand and the chair in the other, as the rain pounded down on me.  Another season was ending, and whether there will be another was uncertain.  

I just stood there, getting wet, unable to process any thought.  I looked down the ridge to the forest floor that lay beneath me, then across the tree tops that stood before me.   I became aware of the rhythm of the falling rain, and that, in its gentle whisper, I was privy to an intimate secret it was sharing with the woods.  For a moment, my conjecture on whether this would be the last hunting season or not was put aside, and I was there, on the ridge top, alone in the woods, in my woods, listening to the secret that the rain was letting me in on.  It’s beautiful, it was saying, the grey rain in the trees and their dark shadows, even in the absence of color, especially in the absence of color, long after the spring blossoms of the wild flowers, long after the deep and lush greens of summer, more than a month after the brilliant oranges and yellows of autumn, and before the hushed pure white blanket of winter snow, here and now, when everyone else has retreated to the warmth and comfort and lamp lit lights of their homes, here in the woods alone with the cold and soft and driving rain it is still and quiet and beautiful. 

I stood there, in my woods, in my moment, drenched in its intimacy, listening to the sound of my rain, feeling it on my face.  It wasn’t the dark and cold rain I had become familiar with.  Instead, it was pure and steady and soothing, and it cleansed my soul.

Float Like a Butterfly, Waddle Like a Duck

The film When We Were Kings documents the 1975 heavyweight championship fight between the then defending champion, George Foreman, and the ex-champ, Muhammad Ali.  The fight took place at a time when the Heavyweight Champion of the world was still one of the most revered and glamorous titles on the entire planet.  I was in high school at the time and the prevailing opinion was that Foreman, possibly the most powerful puncher ever, was invincible, and that Ali was past his prime.  No one gave Ali much of a chance.   Ali, of course, did win, in the famous “rope-a-dope” fight, where he spent much of the early rounds on the ropes and let Foreman punch himself out.  Once he had exhausted Foreman, Ali came to life and knocked him out in the 8th round, in one of the biggest upsets in boxing history and the greatest moment in his illustrious career.

As the movie points out, simply labeling the fight as the “rope-a-dope” doesn’t give Ali enough credit.  Ali had a strategy that confused and frustrated Foreman from the beginning, as he came out in the first round dancing, “floating like a butterfly”, and throwing more right leads (and landing a surprising number of them) than he had ever thrown before.   Then in the next few rounds, he’d balance his time on the ropes with his famous dancing and left jabs.   As a result of spending so much time on the ropes, he took an incredible beating, as Foreman gave him literally everything he had, repeatedly landing crushing blows to the body as well as occasional solid connections with Ali’s head.

Now, Ali has Parkinson’s disease, likely caused by blows to the head he received in his boxing career.  It has been documented that Ali had been diagnosed even before his last fight, the sad and pitiful bout with Larry Holmes.   When I watch replays of the Ali-Foreman fight now, I can’t help but wonder, each time Foreman lands a shot to his head, if that is the exact moment that triggered Parkinson’s in Ali.  It also makes me wonder when was the precise moment that whatever caused my instance of Parkinson’s occurred.

A major issue driving Parkinson’s research is the lack of known biomarkers for the disease.  Unlike heart disease, which has cholesterol and blood pressure measurements to diagnose pre-disease likelihood, there is nothing to determine if one person is more or less likely than another to get Parkinson’s disease.  Not understanding the causes makes the search for a cure all the more difficult. 

There is evidence to suggest that repeated blows to the head or long-term exposure to certain chemicals or pesticides may cause Parkinson’s disease.  But, other than not getting into the ring with Foreman, or not taking that job in the DDT manufacturing plant, there really isn’t anything anybody can tell you to do or not do to avoid Parkinson’s Disease. 

The most disturbing possibility, currently unproven, is that there may be a genetic link to Parkinson’s.  In my family, only my maternal grandfather had been afflicted with the disease, and he was a farmer in the 1950s and early 60s, when DDT was legal – so I hope, with no proof, that he used large amounts of the pesticide on his farm and that was how he contacted Parkinson’s.  The alternative, that there is some genetic component that was passed down to me, is of course too horrible to consider.  My greatest fear is that I’ll somehow pass this down to my children or their children.

I was officially diagnosed with Parkinson’s on March 25, 2005, but when and why I was first afflicted, when I first came down with the disease, remains a mystery.  Looking back, there are a couple of clues that suggest I had already had the disease for at least two years by the time I was diagnosed.

It was Christmas day, 2003, and we were celebrating at my in-laws house, when someone suggested that all the guys play a game of touch football.  I and my sons Jon and Nick went against my brother-in-law, Doug, and his sons Jason and Jordan.  My other brother-in-law, Mike, was neutral and played quarterback for both teams as the epic battle went on to a quickly forgettable and laughable resolution. One of the wives videotaped the proceedings, and when we sat down to watch, my wife asked very pointedly, “why are you running so weird?”

The videotape revealed that the pass patterns that I thought I ran I had actually waddled, as I shuffled along taking very short steps.  I knew I wasn’t going at full speed (full speed for my age, weight and conditioning being pretty slow), but I assumed I was running.  I had no answer for why the short shuffling that I had thought was normal running.  It was one of the most bizarre and unexplainable things I had ever experienced.  I looked like a bald and overweight duck.

The other clue also involved my brothers-in-law and another middle aged attempt at athletics.  In the spring of 2003, Doug had formed an adult, co-ed softball team and asked Deb and I to join.  I readily agreed, with the memories and glory of being the starting shortstop in my little league all-star game at age 12 playing like a highlight reel in my mind.  At some point before the first game, I realized that it had been about 25 years since I had really played (I had coached my sons rec-league teams, but hadn’t played in a while) so I was fairly nervous as I took to my position in left field.  The nervousness quickly faded, though, as I felt the familiarity of being on the field and had a couple of base-hits come my way.   As I made the routine throws from the outfield to second base, I remembered how fun the whole experience was, the feel of the glove on my hand and the smell of the grass, and for a moment, the butterflies faded and the years rolled away and I was a kid again.

This feeling lasted until the bottom of the second, when, with one out and a runner on first, I was due to bat for the first time.  Suddenly the butterflies were back.   I remember thinking, just focus on the ball, look it in until it is on my bat, and, maybe if I’m lucky, I’ll hit the damned thing.  Sure enough, the first underhanded slow pitch came in, high and a little bit short, and I reared back and swung.  Much to my pleasure I heard the aluminum twang of the bat connecting with the ball, and I watched as a sharp grounder headed in the direction of the opposing shortstop.  My thrill at hitting the ball was quickly dampened by the realization it was a custom made double play ball, a double play that would take us out of the inning.  I put my head down and started running as fast as I could to first base, hoping to beat out the relay and keep the inning alive.

Head down and running full speed to first base, I wasn’t even out of the batter’s box when I saw the sand of the infield rushing up to my face.  Before I could put my hands up to brace myself, I had fallen, face first in the dirt.  I tried to get up and run but I couldn’t summon the proper coordination to get my feet, which still thought they were running as they repeatedly scraped the infield sand, on the same page as my legs and my upper body, which were frantically trying to get me upright again.  Finally upright, I started running again, but soon my upper body was in front of my legs, and I stumbled onwards, finally losing my balance again, as it was first base itself that rushed up to greet me this time.  I don’t know what happened to the ball I hit, there had to be a couple of errors along the way, because the result of my long and tortuous journey ended up with me being safe literally by a nose, as I fell once again face first, this time smack in the center of the bag a split second before the ball arrived in the first baseman’s mitt. 

People from both teams came rushing to me to see if I was all right. I tried to laugh it off and make light of it, but it was weird. Again I had no explanation of what had happened.  I focused my attention on preventing a re-occurrence, and by consciously slowing myself down, the rest of the season went on without incident. I remember thinking that this must he what it means to be middle aged, that simple things like running that one in his youth took for granted, now had to be consciously controlled and managed .

Looking back on these events now, several years later, I recognize these as the early manifestation of Parkinson’s symptoms that in the future would become more pronounced and frequent.   The weird shuffling and shortening of strides observed in the football game would become later on how I walk, and the falling face first of the softball game would be a precursor of the balance problems I now deal with all the time, as my upper body is always getting ahead of my legs, which try desperately to keep up, resulting in my stumbling and bumbling throughout the day.

Having Parkinson’s disease is kind of like being sentenced to a punishment without knowing what crime you committed.  It’d be nice to know what I did or didn’t do that resulted in my conviction.  Not that it would make any difference. 

The good thing about having Parkinson’s is that, although I never was able to float like a butterfly,  I now have something in common with Muhammad Ali.   And while he may still be “the greatest”, I’m confident that I make a better duck.

The PD Kid Is Not Alone

I attended the 4th annual Parkinson’s Symposium, sponsored by Froedtert Hospital, today.  It was held in a Waukesha hotel’s conference center.   As I pulled into the parking lot, I wasn’t sure I was in the right location, until I saw the slow migration of men and women doing the PD shuffle from their parked cars to the hotel entrance.  I knew immediately that I was with “my people”, and it occurred to me, as I entered and waited in the long registration line, that it would be a mean but funny joke to yell “fire” in this crowd.  

I’ve been to a few of these now, and find the speakers to almost always be very interesting, and today’s symposium was no exception.   As interesting as it is to hear the scholarly presentations from dedicated professionals, I find the real value in these things is the opportunity to interact with other patients and learn about their experiences.  Today, at my table, I was, as is often the case, the youngest person (at almost 53 years of age, it may be the last demographic where I am considered a “kid”).  What was different about today’s table is that the two men who sat to my left had both had Deep Brain Stimulation (DBS) surgery.   This gave me a rare opportunity to trade notes with others who have been through this surreal process.  We all agreed that the pre-op process of clamping the metal frame to the head was possibly the worst part, and they were able to corroborate my experience of, as they screwed the spikes into my head that would hold the frame in place, being able to feel and hear the breaking of skull fragments.   Then there’s the part where they install the electrodes in your brain – while you are awake!   We traded memories of this, like old soldiers trading war stories, with one of the guys telling the scary story of how he almost died from the anesthesia administered to him afterwards, and that in the rush to save him (he was clinically dead for two minutes), they accidently dislodged the electrodes they had just put in, resulting in the surgery having to be re-done.  We traded notes on our neuro-transmitters and their operation and maintenance.  We discussed the differences between my one battery and their two battery systems like we were discussing the differences between six and eight cylinder car engines.

While we were out on break, I ran into a face that looked vaguely familiar.  Looking at his name tag, I recognized him as a nuclear engineer I used to work with at the Zion Nuclear Power Plant, more than 15 years ago.   I went up to him and we talked for a while, with him finally confessing that he didn’t remember me.  That was okay, as it has been a long time – we had a nice chat none the less.  He is about the same age as me, and it turns out he was diagnosed a couple of years before I was, and that he too has had the DBS surgery.  He is now teaching engineering at the Milwaukee School of Engineering.  Like me, his handwriting has become completely illegible, and like me, he is dealing with frequent and debilitating periods of daytime fatigue.  He is wrestling with how much longer he can keep working, just like I had been for the past couple of years before finally throwing in the towel in late March of this year.

We talked for a while in the hallway, until the program began again and it was time to return to our tables.  I said it was nice meeting him again and that I wish it were under different circumstances.  We both agreed that things aren’t as bad as they could be and that there are a lot of worse things we could be afflicted with. 

This is one of the things I’ve learned from attending these conferences.  We PD patients are, for the most part, a pretty resilient group.  When we talk, there isn’t a lot of whining or complaining about our fate – there is more the comparing of notes.   Recognizing, for example, that nearly every PD patient I’ve met has experienced to some degree the same issues with sleep disturbances and daytime fatigue, is somehow very reassuring for me.  I think it is because having Parkinson’s is such an intimate experience – the disease is much more than the impaired motor functions that result in tremors or the shuffling walk or the slurred speech – these are, to borrow a phrase from a Chicago symposium I attended last year, just the tip of the iceberg, the part that’s visible above the water’s surface.  Like an iceberg, about 70% of the Parkinson’s experience lies beneath the surface, and is known only to the patient.   This results in one of the worst symptoms of Parkinson’s – the feeling of isolation.   If for no other reason, the symposiums and conferences and support groups are worth attending for the simple knowledge that you are not alone.

So thanks to all the professionals who put together these events and donate so much of their time, talent and knowledge.   Thanks for your passion and commitment to our rag-tag community of the slow and unsteady.

Heaven and Hell


One of my favorite photographs is of my wife, Debbie, sitting at the kitchen table in our apartment on 18th Avenue.    I took it about a month after we were married.   In it, she is smiling broadly, and her smile expresses such pure and simple happiness that it has never failed to put a smile on my face. 

That was thirty years ago now, and we were just taking the first steps in our shared journey to a destination unknown.    She is older now but to me even more beautiful.  The same deep green eyes that lit up that photo still brightly shine, but now with the added depth of Motherhood and 30 years of loving and being loved.  I wonder if it is because I am so in love with her and have lost any pretense of objectivity that I don’t see the same lines and wear on her face that I see on mine when I look in the mirror.  Whatever it is, I see her how I see her, and I am still moved to tears when I watch her sleep.

I never planned to love anyone as intensely as I love my wife.  I can’t imagine what I’d do without her.  We’ve come so far on this journey, the whole time never straying from each other’s side.

But now we are slowly approaching the dark days that will be the late stages of Parkinson’s disease, and, even though it’s still a ways off, I ask myself, do I want to subject her to this?  To seeing her partner, the man she loves, become a hollow shell.   To seeing her soul mate growing sick and weak and incapacitated.   To becoming my care giver and being forced to spend her remaining good days in the darkness of my bad days.

I am faced with a dilemma:  I love her so much, I can’t imagine what the good days let alone the bad days would be like without her.   At the same time, I can’t bear the thought of her having to take care of me, feeding and cleaning me, bearing witness to my fading dignity.   Eventually I’ll become enough of a burden to test even the strength of our union, and it’ll only be natural for the love she’s felt for me to fade and be replaced by bitterness and resentment directed toward the unrecognizable figure I will become.

So I try not to dwell on these things.  I usually push them out of my mind.  The answer to my dilemma is to not waste good time thinking about the bad times that lie ahead, but rather focus my energies on appreciating the good days still left.  Most of the time, this isn’t difficult to do.  But there are constant reminders of Parkinson’s presence and the inevitable speculation of how fast the disease is progressing.

I’m a creature of habit.  Whenever I leave the house, for example, I ritualistically check my back pocket for my wallet, my front left pocket for my phone, my front right pocket for my keys, and my shirt pocket for my reading glasses.  This morning, while up at my cabin, I was working on pulling some ancient wire fence out of the woods when at some point my glasses fell out of my shirt pocket.  The underbrush and dead leaves were thick enough that after thirty unsuccessful minutes of raking and looking through the weeds, I gave up.  My Dad was working at his workbench in my garage, and we were due at my Aunt’s house for lunch.  I told him we’d have to leave early enough to swing by Ladysmith and buy myself a new pair of glasses.  I went inside and cleaned myself up, changed my clothes, and my Dad and I headed out in my Prius.

Right at the outer limits of the town of Bruce, on Highway 40 just south of Highway 8, I realized that my left pocket was empty and that I had forgotten my phone at the cabin.  At the same moment, the speed limit  changed from 55 to 35, and a rare cop, a State Trooper, caught me before I saw the reduced speed limit sign and pulled me over.  As he got out of his car, I reached for my back pocket, and realized I had left my wallet, where I keep my driver’s license, at the cabin.  In the more than 35 years of driving, it was the first time I had ever left without my license.  It was of course my luck that this event coincided with the unlikely circumstance of a rare State Trooper pulling me over.

The State Trooper leaned into my window and explained that, even after I had seen him and started slowing down, he had me clocked at 45 miles per hour, 10 over the speed limit.  He asked to see my license, and I explained I had just changed pants and left my wallet in my other pair.  He then, since I didn’t have any identification, gave me a pad and paper and asked me to write my name down.  Now I was really starting to panic, as Parkinson’s has left my handwriting completely illegible.  I tried my best and handed it to him.

“I can’t read that”, he coldly stated.

“Sorry, it’s the best I can do”, I replied, then mumbled something about having Parkinson’s disease.  He asked me to spell my name, and as I did, he wrote it down, and went back to his car.  My Dad and I sat, waiting for whatever would happen.

He came back and gave me a $10 warning ticket for driving without a license.  He was the epitome of class and professionalism, an extremely likeable guy, who could sense that, with my 85 year old Father at my side, I probably wasn’t much of a threat to society.  He could have with very good reason made things miserable for me, but instead, he was kind and friendly and understanding.  I thanked him; we turned around and got my license and phone, and made it to my Aunt’s just in time.

When I returned to my cabin to get my license and phone, I found them in the pockets of my other pair of pants in the dirty laundry hamper.  Not only did I forget to obey my normal leaving the house ritual of searching my pockets, I had neglected my other ritual of emptying my pockets out when I take off my pants.  It was another example of what has been an increasing pattern of absent-mindedness and lapses in concentration, and it leaves me wonder if my short term memory is going, and if these are the first indications of the dementia that often accompanies Parkinson’s disease.   Then I remind myself that I am 52 years old, and forgetfulness is a normal part of growing older, and I shouldn’t panic just yet.

But this is the curse of Parkinson’s.  Its path is unpredictable, and its scope is impossibly broad.  Everything from autonomic to intellectual functions are potentially impacted, making you wonder every time a bite of food goes down the wrong pipe if it’s the well known Parkinson’s effect on the swallowing mechanism, or every time I misplace my glasses or wallet if it’s a sign of impending Parkinson’s related dementia.   The curse of Parkinson’s is, when you boil it down, the curse of heightened awareness.  You become acutely aware of every little sign of the inevitable decline that you know waits for you, and are constantly reminded that you are fading away.

It’s easy to get lost in the darkness of this curse.   Once diagnosed, the darkness is always there, and you can never completely step out of its shadows.   You know that Hell awaits you, and as time goes on, more and more of that Hell is revealed to you.  I have come to believe that Hell is for the living, not the dead, visible in the suffering that we must all endure.

Depression and anxiety and emotional incontinence are frequent symptoms associated with Parkinson’s, and there are many scholarly articles out there that discuss whether these are neurological effects of the disease or reactions to stress, and there are studies underway trying to link these symptoms with the dementia that often occurs with P.D. I don’t know if it is neurological in nature or not, but I believe the root cause of all of these symptoms is heightened awareness.   I know that I have suffered from depression and anxiety and, with a newfound tendency to get weepy eyed over the corniest of stimuli, have become emotionally incontinent as well.

 The amazing thing, and I sincerely believe this, is that the heightened awareness I’ve experienced hasn’t been limited to the existential evidence of my eventual deterioration.  I have also become more aware of my surroundings than ever before.   If Parkinson’s has convinced me that Hell is here on earth, it has also convinced me that Heaven is here, too, and is in fact constantly within our reach.  I have become more aware and appreciative of every day wonders, the seemingly small things that we too often ignore or take for granted.   The feeling of the warm summer breeze on my face, the reflection of blue skies and white clouds on the glassy mirror of a still lake, the smell of freshly baked bread as it is taken out of the oven, the laughter of my children, the sound of my wife breathing and the feel of her sleeping body against me in the black dark of night, the warmth of the midday sun through my home office window on a Wednesday afternoon, the poetry of grace and speed and pure joy expressed by my dog, Max, as he runs free in our back yard, chasing birds, the shadows cast by late summer afternoon trees, the explosion of stars scattered against the northern Wisconsin sky above my cabin, the light of the lamp against its pine paneled walls, Van Morrison singing “Dweller on the Threshold”, my wife’s smile.  I find myself more aware than ever that I am alive, and as I weaken and diminish physically, my ability to see and feel love, truth and beauty has been enhanced.

Buddhists believe that “to live is to suffer”, and I think this is true.  We all have to deal with pain and loss.  Only through love can we ease the pain of our suffering, and only by recognizing ourselves in the eyes of others can we love.   These simple concepts are as easily overlooked as they are understood.  That it took Parkinson’s disease to crystallize them for me shows how blinded by preoccupation I had become.

To have Parkinson’s is to appreciate what you once took for granted, and to see what you once were too busy to see.  I hate the thought of what Parkinson’s will put my wife through.  At the same time, Parkinson’s has made me aware of just how deeply I love her, and how much I treasure the time, good or bad, that we spend together.