reactions can be kind or curt

If you have Parkinson's disease, you find you can bring the best and the worst out in people. All it takes is a walk down a city street.

 Most people are polite and kind when confronted with a writhing, quivering person teetering to keep balance on the sidewalk ahead. Doors are opened for you. People slow down to your pace. Some even make the effort to smile.

 Others, mostly kids but some adults, stare.  Some brush by you in a hurry, just about knocking you off your feet. Then there are those store clerks and customers in line behind you who sigh loudly while you, mumbling apologies, struggle with unco-operative digits to pull cash from your wallet at the check-out.

Walk a mile in my shoes, buddy, and you may learn something, I think, as I complete my business and wobble out the door. Thanks for the sensitive, caring response to my disabilities. You know, I spend most of my waking hours plotting these delays to your all-important VIP life. Excuse me!

Some people are overcome with pity for your plight and while they mean well, they make you feel uncomfortable. Sort of like that aunt who used to hug you too much when you were a kid.

I always try to answer questions people have about PD with honesty. Yes, sometimes now I need my wife to cut my food up when we`re eating. My grip is weak due to peripheral neuropathy, damage to the nerves in my hands. It's a condition that may be the result of my constant efforts to still my shaking head by leaning forward on my elbows. The condition can also be a side effect of the drugs taken to cope with  PD. Next question.

The people I like the most are those who treat you with the same respect and dignity as anyone else. They make you feel comfortable and at ease. They look beyond the damaged shell of your body and connect with the real you. They make allowances for your condition, perhaps quietly ensuring your meeting place is easily accessible, or offering to carry something for you if you're struggling.  

Humor is welcome, too. I was telling one of my doctors how people confronted with my head bobbing and weaving often unconsciously mimic my behaviour. "Boy, you could really mess with some people, think about it," he said.

All I want is to be treated as normally as possible, without a big fuss and yet some consideration of my limitations.

That`s why education about PD is so important. Knowledge leads to understanding. And the more allies we have, the better off we are.

And that's why I admire the efforts of people active in the provincial and national associations  who assist people with PD and raise funds, and those individuals who have drawn attention and research dollars to our cause. 

Let me know what you think.

introduction

Each and every morning of my life for the past seven years, I've participated in a pharmaceutical ritual, a daily rite of passage that prepares me to face another day with Parkinson's disease.

With trembling hands and digits dulled by nerve damage that sometimes accompanies the disease, I fumble to transfer a dozen different types of pills from their containers into the compartments of a plastic sleeve containing the four doses of drugs that I need each day.

I know each drug tablet by its distinctive shape and feel; I could, and have, doled them out with my eyes closed or in the dark. About half of the pills I take help dull the effects of Parkinson's. The remainder deal with other ailments I have accumulated in 60 years of life, such as an irregular heartbeat, high blood pressure and osteoarthritis that led to a hip replacement.

Standing over the kitchen sink, I recheck the handful of pills that is my first dose. I often feel like a diver poised on the edge of a 30-metre high tower, steeling myself for a plunge not into water but another day of wrestling with my increasingly unco-operative body. Most days, the drugs are my deliverance. Some days, I curse their side-effects.

It's hard to believe that just a decade ago, I could cycle long distances and play old-timers hockey. Now, I am what several of my doctors describe as "a mess." It's odd, but that description doesn't bother me. Instead, it has always prompted laughter.

I'm not sure how this all came to happen. I used to be reasonably fit and cycled to work in the summer. I don't drink a lot or smoke. I don't abuse drugs. Doctors have ruled out genetics. I don't recall immersing myself in a pool of PCB-laced waters or a field freshly sprayed with pesticide at some point in my life. Okay, I did ingest a gulp or two of bleach I found in a kitchen cupboard when I was 2 1/2 years old. My alert Mother quickly got me to a hospital where my stomach was pumped. I haven't touched a drop since.

The thing is, I really don't feel as bad as it sounds. Yes, I've been angry and depressed and turned away for a time from a Creator who I blamed for my pain and all the senseless cruelty of our world. I will always be frustrated by the growing limitations this disease imposes.

As time goes by, I've stopped asking why this has all happened to me. It just is, and I accept that as best I can, keeping a positive outlook. I've learned that being a self-pitying victim holds no rewards. My task in the theatre of life is to play the role I've been given as best I can. This deal doesn't come with do-overs.

I can still write and reason.  I can still walk my dog, cane in hand to keep my balance. I can watch my grand daughter figure skating.  I even occasionally golf, after a fashion, with understanding family and friends. Yes, I do miss skating and skiing. But now that I'm fully retired, my wife and I plan to spend winters somewhere sunny and warm.

What my Parkinson's and other health issues have done for me is focus my attention on what is really important to me -- my relationship with God and nurturing the spark of Higher Power we all possess within; time with family and friends; and living in the moment, appreciating the stunning beauty and intricacy of nature and all those spectacular sunsets and sunrises we take for granted.

I'm starting to understand I'm where I am for a reason. Right now, I've been moved to use the skills I have accumulated in a lifetime as a writer, editor and communicator to link those who have Parkinson's together in mutual support and greater understanding of the disease. I also feel I should be helping our caregivers and the rest of the world comprehend the challenges each person with Parkinson's faces daily.

I would like this blog to be about helping you cope with and understand this disease, whatever your perspective. Think of me as a radio phone-in program host who enables all those who want to participate in the discussion to do so.  So I'll share my stories to get the ball rolling.

I invite you to join me on this journey by sharing your thoughts, questions and experiences of Parkinson's on this blog. Until next time, take care.