Saturday, February 20, 2010

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.


  1. Great post! I can relate to this very well, as I was diagnosed with PD almost 6 years ago at the age of 39. I have often compared the disease to an out of control bus, and frequently need to remind myself that I have 2 choices: I can either sit in the back cowering with every pothole the bus hits, or I can step up front and drive.

    Thanks for the post.

  2. Joe;

    May your driving amidst the potholes be a model for others and an adventure for you.

    Thanks for the encouragement.


  3. This is the best thing I've ever read about having Parkinson's. I love your sentiment and and your eloquence. Now I know just what to say to my neurologist next month and it's not "I'm getting worse". I'm going to print it out and frame it. God bless.


  4. I can relate very well to your post and find it very encouraging. Diagnosed with PD in 2009, having probably had it for two years, I have a very positive attitude. I am 58 and want to continue working as a nurse until I am 60. I believe exercise, working and a positive attitude go a long way to slowing down the disease. I try and live every day to the full. Marjorie , Scotland.

  5. The "I am better at...." paragraph is awesome and inciteful. When my atheletic son who was being groomed by tennis officials to become a pro, and who enjoyed basketball (more than eating) baseball, softball, etc., and never ate a meal sitting down, but grazed the plate from meal to meal running by on his way from one sport to another, broke his leg in 2 places at the state baseball tournament and had several surgeries and was school shopping at age 13 from a wheelchair, said to me while crying in despair at the problems of angling the mall and aisles from a wheelchair, "Mom, I'll never ever just walk by a wheelchair again and speed by to get through and around. From this point on I'll realize how hard their lives are and have compassion for them." I think it takes being in a somewhat "beaten state" to open our eyes and see really how lucky we've been before and never recognized the fact until the problem hits. The old proverb "Pride goeth before a fall" has a lot of validity. My mother's dementia has opened my eyes so very wide to problems I'd never really noticed before, made me research, blog, do talks, etc., about a subject that prior to 12 months ago had no part of my life.

    You may be "getting worse" in body, but in heart, mind and spirit, you are growing far faster than you know. May God bless you in your journey forward.