Monday 27 August 2012

telling others can be tough

One of the most difficult things for a person with Parkinson's Disease is letting loved ones, friends and co-workers know about their diagnosis.
I remember that late summer day in 2005 when a neurologist performed some tests on me and watched me struggle to write my name. I had been to see him a year earlier as I tried to cope with tremors in my left hand and foot, a problem that had dogged me for about three years. My General Practitioner at the time called it "a familial tremor."  At that time, the neurologist wasn't certain what was causing my troubles.
But just 12 months later, he didn't hesitate. "Sure does look like Parkinson's to me now," said the neurologist. "I'm going to refer you to the Motion Disorders Clinic at the Foothills Hospital."
It was like somebody had pulled a dark curtain over what I had envisioned as my future -- about another decade of enjoyable,  rewarding work, followed by a happy retirement with my wife, crammed with travel, golf, friends and other activities.
I remember thinking how damned unfair it was. I had just had a hip replaced earlier that year due to osteoarthritis, and the year prior, had a benign growth removed from a parathyroid gland.  I was taking medication for high blood pressure. Was my body going to betray me completely and begin an irreversible process of decline in my 50s? I was too young for this crap.
I phoned my wife Vicki and told her the news. She came home soon after, reassuring me we would get through this challenge like every other one we had faced.  I remember crying, but most of all I recall being just numb with shock. Even though I had suspected PD was behind my symptoms for several years, confirmation was like a punch in the gut.
As days passed, I began to ponder who and how to tell others of my fate.
It's hard enough coming to personal terms with the life-altering affliction, let alone worrying about what and when to tell others. Experienced medical authorities say that those closest to you, like spouses and children, need to know first. And then when the time is right and you're ready, the wider world should get the news.
Above all, it's most important to keep your own needs at the top of this hierarchy.  You are not responsible for helping other adults who react negatively or angrily to the news. It's not your fault and it's up to them to get help. You can guide them to sources of information. Children deserve special consideration, however, and it's worthwhile to seek professional advice on this point.
I let my two boys know the next time I saw them, assuring them that I would try to determine if my condition was hereditary. Turns out it's not in my case.
At work, my supervisor agreed to my desire to inform my co-workers in individual conversations one-on-one. I encouraged questions, explained how PD could affect my work and received lots of encouragement and support. I think it was a much more effective course of action than letting people know in a group setting.
I let other relatives know as it became practical to do so. 
What about the rest of the world? I explain I have PD if someone notices my tremors, my obvious bobbing and weaving head and the challenges using my hands. This usually is met with gracious gestures and help when I need it.
People have surprised me with the amount of concern and support they have provided. There's more good out there than indifference.
Recently, I was wrestling with my unruly suitcases at the airport after a flight back to Calgary from Ontario, where I visited family and friends.  From seemingly out of nowhere, a smiling, thoughtful gentleman provided me with a luggage cart  and helped me put the bags on it.
He smiled as I thanked him more than once and explained my disability. He seemed just happy to help. And I didn't feel as alone in my fight with this affliction as I might, because he had helped me and I had made an effort to communicate why I needed and appreciated his gesture.