Parkinson’s and the Art of Getting Better

I met an old friend the other day who, after a somewhat awkward handshake, asked me the typical, polite throwaway question, "how are you?" Feeling in a particularly self-disclosing mood, and assessing the risk as minimal, I divulged my PD diagnosis, to which he responded, "I would not have noticed. Is it progressing?". With no more than a tinge of sadness, I admit, "As is inevitable, it is getting worse."

Every day, often without realizing it, I conduct a self-assessment. Is my tremor worse? Am I stiffer than I was last week? Are there any telltale signs of new symptoms, such as problems with balance, shuffling gait or (shudder) cognitive dysfunction? Inevitably, at the end of each inquiry, I become resigned to the conclusion, "I am getting worse!" Slowly, like the flow of lava creeping toward a waiting village, Parkinson’s will increasingly have its destructive way. That is just the way it is. Fact. So what do I say to myself in response to this less than thrilling prospect? Get over it? Just give up. Ignore it? Get used to it? Fight back!

From time to time I admit using all of the above self-talk phrases, plus a few too personal to list here. Such is my human experience. But what makes my impending PD peril so different than that of every other human being? After all, who after the age of about 50 doesn’t to some extent have to admit, “I am getting worse.” Maybe not in pervasive ways like those who deal with diseases leading to premature death or disability. But in small ways, perhaps from our teen or early 20 something years, we are somewhat in a state of decline. Who of us after 50 find it easy to: Stay fighting trim? Avoid telltale wrinkles? Summon up more energy? Have broader and more inquisitive thoughts? No, not most of us as we are all living with the metaphorical white sand filling up the bottom of the hourglass. That is just the way it is. Fact. And your response to that is…?

So whether you have PD, MS, ALS or some other acronym-labeled disease, or simply recognize life for what it is, we are all in similar boats, headed downstream at an ever-increasing speed, or so it seems. The question remains, how do you grapple with this fact?

So when I am asked by some unsuspecting friend, acquaintance or stranger, “How are you?”, I automatically think of the day’s self-assessment, and am prone to answer, in effect, "I am getting worse". Few would disagree with that analysis, often eliciting a pitying, "I am so sorry". But if that is the only reality that I acknowledge, it is my choice. Perhaps my response is reflective of my belief that I am in fact getting worse. But am I?

I was challenged after that chance interaction with an old friend on the street corner in downtown Vancouver to reevaluate my response to him. Yes, my Parkinson's disease is progressing. It is, in fact, "getting worse". But am I getting worse? I suddenly realized that in answering the way I had I was replacing who I am, the I, with the Parkinson's disease that I have. In other words, I was letting the disease define me.

I am not "getting worse". I am getting better. I am better at relating to and caring about people who are hurting, grieving, suffering loss, feeling overwhelmed, or just plain sad. I am better at being patient with people who are slower at driving, moving, thinking or responding. I am better at remaining silent in recognition that I do not really have anything useful to say. I am better at taking advantage of opportunities that present themselves today, rather than putting them off. I am better at accepting the difficulties of life, recognizing that they can make me stronger, wiser and a better person.

I am committed to getting better.

Parkinson's, Wine and Old Friends

Relationships with old friends are like wines; the good ones usually improve with age, becoming richer, deeper and more intoxicating, while the others of lesser quality lose their flavour. This was proven last night.

It actually started 30 years ago, in September of 1976, when some 179 mostly young students (me being one of them) met for the first time in classes or the "Interaction Area".  Someone lacked creativity, but that is what they called the lounge area in the bunker style building of the University of British Columbia Law School. Three years later, almost all of us were unleashed to "practice" law on an unsuspecting public. Can you imagine the fear of those first clients if the truth had been known? "Hi, my name is Gerald and I will be your lawyer today. I have a law degree but no experience so I will be practicing on you."

Of course, we learned about the law at law school. However, we never learned how to actually be lawyers until we began to "practice". In retrospect, it was like handing a scalpel to medical students, who had never performed an operation or even watched one (except on TV), and suggesting they go find someone to "practice" on. Young lawyers do not get supplied with cadavers for “practice”.

Fast-forward (and I mean fast) 30 years to a gathering of those same people, at least a reasonable sampling of them. The scene at the 30 Year Reunion of the Law School Class of 1979 was fascinating for numerous reasons. The usual differences in appearance were stereotypical. Some had aged well and others, well, they had aged.  Some put on weight and others looked like models.  Some were in Armani suits while others were in jeans.  There was the array of careers from personal life coach to an expert in “meteor law” (true!). There was a mining executive with a UBC librairy named after him and a significant number of judges.  And some of our class did not come for obvious reasons.

I was charged with giving a tribute to our classmate and friend, Hugh. As part of that 'in memoriam' I read my October 1, 2009 blog entry, "Round Multicoloured Bruises", which off-handedly mentioned my Parkinson's disease. I did not want to make a big deal of this disclosure, but I did not want to hide it either. I had tried to prepare myself for what I thought might be the responses. I knew that there would be no collective inhaled gasp, lawyers are far too controlled for that, but I was anticipating a variety of responses. Like uncorking a bottle of wine, I honestly did not know what to expect.

I was struck again by how awkward even old friends seemed to handle the news (only a few in the room knew of my diagnosis). Despite trying to be casual and take a "it's just a card I've been dealt" attitude with a chaser of "lots of people have it worse", few classmates mentioned it. Maybe they did not hear me, as apparently I was reading too quickly in my attempt to keep to my time allotment (something most lawyers find difficult, as was ably demonstrated by others later in the evening). Those that did comment seemed to have difficulty with words (not a common occurrence for members of the legal profession).

It seems to me that dealing with a person who has a disease or disability is difficult, even for my friends. There seems to be helplessness felt that does not sit comfortably with those more at home with corporate mergers, complex court cases or solving problems generally. PD just does not fit. And it cannot be hidden (at least for long) before an explanation needs to be given for the symptoms. So I had concluded that the risk had to be taken.

It may be groundless, and even a touch of paranoia, but I drove home wondering if I had just been labeled by most of my classmates.

Like the bottles of wine we auctioned for a law school scholarship fund, we all seem to want to know names and details so that we can define what, or who, is inside.  But it is time, which ages all things, that will provide proof of character and content.