The View from the 25th Floor Ledge

Staring out the window of the 25th floor boardroom, I swallowed hard...and jumped.

Whether to disclose one's disabling disease can be a daunting decision. The meeting that I had arranged with Patrick at his office began easily enough with the typical 'catching up' and pleasantries, having known each other for more than 30 years. When our conversation turned to Eric, a colleague we both knew, Patrick said, "Too bad about his diagnosis of Parkinson's disease.". With that cue I decided to jump in and found myself announcing, rather casually, and more than a little awkwardly, that I shared the same diagnosis. As questions and details followed it felt like I had just launched myself through the window and was plummeting toward West Hastings Street at terminal velocity. An irrevocable step had just been taken and its consequences were entirely out of my control. I was free falling. Second thoughts began immediately.

"Why had I made the unplanned disclosure?" I began wondering repeatedly to myself. There had been no apparent need to say anything. The look that hung in Patrick's eyes for a few seconds left me doubting the wisdom of the thoughtless leap. Would I be branded forever in his mind. And what about others he told? I could hear it now, "Bob has Parkinson's.” Was I labeled for life? Would my professional ability, reputation and 30 years of building a practice now live in the shadow of that disease title. Was this committing professional suicide as surely as a leap from the nearby ledge?

Tumbling through my mind were a handful of reasons for the unsolicited confession, most not particularly convincing.

First, I don't believe I was seeking pity. That was not and never has been part of my make-up. Second, sometimes, when the symptoms are especially noticeable (brought on by heightened levels of anxiety because of court appearances or other stressors), I anticipate the quizzical looks and head off the mystery and embarrassment by informing those assembled that I have PD. It just seems easier that way. It explains the tremors rather than have them misinterpreted. But that was not the case in that office tower boardroom.

So what was it? After more soul-searching I believe there is only one answer: I wanted to be understood. Seems to me that we all want to be understood. Don't we? This is despite the fact that the words, "I understand" rarely seem to ring true in the ears of those who hear them. After all, who can really understand a disease with which they have no experience? Despite knowing this we are ready or even craving to share our vulnerability. This has proven an enigmatic but powerful motivation in my life (and, I expect, others). I think that we all know in our gut we cannot experience real relationship with others unless we are vulnerable to some extent.

For those of us trying to live positively with PD, there is always the potential for us to hide. First we camouflage our symptoms. And when we can no longer keep the embarrassing tremors, stiffness and other socially awkward signs under control we are tempted to retreat entirely. The potential for rejection seems to rise to an acute level as this debilitating disease progresses.

So to avoid the isolating effects of PD I believe we must be prepared to jump, to believe that others will a least try to understand and care. There will be some who step away out of fear, but if we hope to be accepted for who we are, PD and all, we must believe in our own acceptability to take the chance.

So I say jump. The risk will be worth it.

Left Handed Attitude

Every time I try to write, shampoo my hair, brush my teeth or eat, I need to do an attitude check.

I am right handed. Ironically, the PD affects only my right side...so far. I know the left is waiting for its debut in the PD pantomime. Over the 3+ years since my diagnosis (and second opinion..."yup, positively Parkinson's"), I have progressively lost the dexterity and agility of my right hand. It's not useless. It just refuses to fluidly form the letters on the page. At best I print in wobbly letters because writing is impossible and even my signature is different each time (the bank calls regularly).

In the shower my right hand stays stubbornly in one place atop my head as my left hand is forced to do all the work rubbing the shampoo into my hair. This results in an odd sensation as I stand there with one hand foolishly poised to act but remaining motionless.

Right-handed teeth brushing works only if I get the tempo right, and then keep it that way (although I expect that when I see the dental hygienist she may not give me any prize for efficiency).

And eating is almost entirely a left-handed affair, lest I sprinkle soup, salad or spaghetti sauce all over me, the table and anyone who sits too close...although meals would take longer and this might assist my diet by limiting intake.

Even typing this entry is mostly a left-handed endeavour (with the right hand joining in on occasion with a halting stab at the supposedly correct key). Usually I use voice-recognition software (Dragon Naturally Speaking) to ease the frustration of what I need to do daily at work.

This brings me to 'attitude'. My initial response to this forced, late in life learning to be a southpaw is utter frustration (euphemism for anger). Inside I am saying, "I hate this! I used to be able to do this without thinking. Now I am a klutz." But slowly (sometimes at the tortoise speed of westbound traffic on the Port Mann Bridge at 7 AM), I remember that I am still able to function independently. If I can't get a grip (so to speak) on the small stuff now, I will end up an angry old man lashing out at those that are around to help me. That is not me, or at least it has never been me. And it is certainly not who I want to become.

Although I disagree with some of her New Age conclusions, Byron Katie's book, "Loving What Is" has some very good points to think about. She says, "It's not the problem that causes our suffering; it's our thinking about the problem." In other words, it is not my PD, it is the way I think about it that is the cause of my frustration. Maybe this sounds a little twisted, but if that is not true, how can I avoid getting increasingly angry as my right hand becomes increasingly inept?

So today, and every day, as I relegate tasks to my now stronger more capable left hand, I remember to be thankful. I have two hands. If one does not work perfectly, at least I can tie shoelaces, drive my motorcycle, pick up my grandson, shake hands firmly, and hold my wife's hand as we walk. Tomorrow will bring what it may. Life, just as it is a God-given gift with daily dividends, also takes away something every day. We cannot be happy if we resent the latter, for it is a, dare I say, necessary part of living.

For me, learning a left handed attitude is a key to being positively Parkinson's.

In the Beginning

Parkinson's disease (PD) starts out as innocently as a small outbreak of acne. It is annoying at first, but generally goes unnoticed. A few people seem to have eyes that see the rather unappealing flaws, but most don't much pay attention. But week after week, month after month, it gets worse. More people look at you a little too long with that quizzical expression (you know, the one that says, "There is something wrong with this picture. Now what is it?"). You are increasingly bothered by this "condition" that does not seem to go away. At some point you see the doctor. You expect the dismissive, "take a few of these pills once a day for the next two weeks and that nasty problem will disappear". Instead, after a few rather innocuous tests the unsmiling man in the white smock tells you the news that will change your views of your genetic heritage, upbringing, work, family, and/or even God (there has to be something or someone to blame). In short, your whole worldview is shaken. Most of all, the diagnosis immediately distorts your sense of the future.

There is no doubt after a second or third opinion, it's POSITIVELY PARKINSON'S. This is a life-altering, "incurable", degenerative and ultimately debilitating disease. This dying of dopamine in the brain, and its consequences, begin to define you. A thousand times a day your mind repeats mournfully, "I have Parkinson"s Disease."

The good news (of which there is precious little) is that you are unlikely to die from PD. The bad news is that you must learn to live with its greedy encroachment on "normal" living. And you have no idea how to do that!

PD is not a disease you can hide for long, although one becomes very adept at doing so (sitting on my jumpy right hand is my personal favourite). It is not a disease that progresses or evidences itself predictably, even day-to-day. It will certainly humble and frustrate you as it progressively conquers your limbs one by one, but no one will predict exactly when or how . Its symptoms might be 'treatable' by a plethora of pills, but at some point the adverse affects of the meds may be worse than the PD itself. There may be pain or not. Tremors or none. Stiffness might convert your face to an unblinking, expressionless mask and your legs to planted stumps. Depression, insomnia, loss of smell, and/or fatigue may invade your experience. The picture is not pretty.

Writing a blog focuses the mind. Writing one about living with a disease that has the disturbing ability to incessantly remind you of its unwanted presence is like looking through a microscope. It can be a frightening picture; like a horror movie with a progressively more scary storyline. No happy ending!

But must those of us contending with PD be permanently relegated to the ranks of those pitied by others (and sometimes ourselves)? I say "No!" After all, "normal" really is just a setting on a dryer. There is so much we can do. It was my 21 year old daughter who came up with the name "Positively Parkinson's" as we drove together from the Seattle Airport to our home in Langley British Columbia and talked about this risky business of blogging. I told her I wanted to start a blog to share words of encouragement with others dealing with PD, and those who care for or about them. The name was perfect.

So here it is, the beginning. I intend to post entries as often as my schedule allows. I invite feedback and comment; good, bad or ugly, I will try not to take it personally.. I will share stories and ideas (and I invite yours).

My hope and prayer is that this modest and personal attempt at sharing my PD journey and exploring ideas of how to live positively with it will somehow encourage others facing the often overwhelming and always uphill uncertainty of life with PD. We can be "Positively Parkinson's"!