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.

Bobblehead Sings Karaoke

The Chicago hit, “Just You and Me”, that I dedicated to my wife and sang in the karaoke bar was a little off key and one octave lower than Peter Cetera did it in 1973 (the year before we were married). But that, and the fact that my tremor was accentuated due to being stressed and having forgotten my Parkinson’s medications, didn’t cause me to be embarrassed in front of the entire Kuhn & Company team. They were supportive of and accepted me for who I was, as they have always been (which excuses more than just the bad singing and the shaking).

This scene took place at the "Northern Lights" night club aboard the Holland America ship "Zuiderdam”. It was the 9th Kuhn & Company retreat aboard a cruise ship plying the West Coast waters for a few days of relaxation, teambuilding and continued professional development. These short repositioning cruises that frequently leave from or return to Vancouver in May and September provide an ideal opportunity to express appreciation for our fellow team members, as well as a chance to focus on team issues. This has become a unique highlight of our law firm culture. With the whole team, not just partners or lawyers, and spouses/significant others, it is a hallmark of our non-hierarchical team orientation and core values. But even more importantly, spending three or four days together provides ample evidence for the accepting and caring environment I am honored to work in. And that leads to a bobblehead.

In most law firms no one would risk buying life-like bobblehead dolls as gifts for the partners. Least of all when one of them has Parkinson's, resulting in his head experiencing tremors from time to time. But that is exactly what the Kuhn & Company team did. I was proud of them. Courage and creativity thrive best in an environment where risks are encouraged and people are accepted for who they are.

Despite being the senior partner, I have felt and experienced an incredible amount of support, acceptance and caring since announcing to all members of the team the results of my diagnosis two months after I received it. By that time there were minimal signs of the disease; deteriorating handwriting and some tremor. But I felt I needed to trust my fellow team members with this personal information early on, and well before any of them could ask, "Why did you not tell us sooner?". Of course, there was some risk involved, as some may have interpreted this news as a negative forecast for the future of the firm, but it proved to be just the opposite. No one left, and everyone was fully supportive, understanding and accommodating of the various consequences of the disease.

As my handwriting deteriorated further, a stamp was obtained for my signature, which due to stiffness changes every time I try to make it. When my typing speed deteriorated and sometimes a stiff finger stuck on a key a little too long resulting in some curious, and even laughable, typographical errors (such as the time I sent an e-mail signed "Boob" instead of "Bob"), I converted to voice-recognition software. This demands that I proofread much more carefully, as I am prone to make phonetically correct but embarrassing errors if I am in too much of a hurry, which is often the case.

The lessons I have learned from being in a highly supportive work environment is that having Parkinson's disease need not be a fast-track to retirement or leaving behind the challenging professional arena that I have enjoyed for so many years. I recognize that everyone who contends with PD is not so blessed, but I would urge early disclosure to at least avoid the stress of hiding symptoms from fellow workers and risking the loss of support in the workplace. After all, even a bobblehead can sing karaoke and hear the crowd shout a warm, if somewhat overstated, "Fabulous".