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.