Carnett: Life has been good in the nine years since diagnosis

Nine years ago this spring I was diagnosed with Parkinson’s disease.

I wasn’t exactly gobsmacked by the news. I’d had my suspicions for a long time. But I became aware of the fact that my life, as I knew it, was about to change.

And it did.

I was surprised by my response to my diagnosis. Rather than being devastated, I felt an inner calm that I hadn’t anticipated.

I also never asked, “Why me, God?”

My father died of Parkinson’s. Was I more deserving than he of good health? Certainly not. He accepted with courage and dignity the personal violation and pain of this disease. He became my role model.

Before making my initial appointment with a neurologist, I’d exhibited nagging symptoms for a year or longer. I quietly dismissed them, but they wouldn’t go away. Finally, my answer came, and it wasn’t one I’d hoped for.

Parkinson’s is a progressive neurological disorder with no known cure. It causes nerve cells to die or become impaired, and patients exhibit such symptoms as tremors or shaking, slowness of movement, rigidity or stiffness, loss of facial mobility and balance difficulties. Other signs include a shuffling gait, cognitive problems and muffled speech.

Strangely, my diagnosis brought relief. I could finally acknowledge my affliction. I stopped trying to hide signs of the disease from friends and co-workers. Public presentations had become the bane of my professional existence. I could now put to rest rumors that I was suffering from an anxiety disorder. Nerves didn’t cause my hands to shake. I had Parkinson’s tremors.

Ego reared its ugly head. I didn’t want to be perceived as weak. I especially didn’t want pity. Sorry, no choice in the matter. It embarrasses me now to acknowledge my vanity.

My wife, Hedy, and I hugged when my neurologist broke the news. It could have been much worse: ALS (Lou Gehrig’s disease), MS (multiple sclerosis) or Lewy bodies. We didn’t know what awaited us, but we prepared to face it together.

Two years later I retired.

Hedy too is a Parkinson’s casualty. We go to doctor’s appointments and attend Parkinson’s seminars, classes, support-group meetings and activities together and read the latest literature. She’s more diligent at this than I.

I once asked her, “Honey, did you ever in your wildest dreams think you’d be nurse-maiding a husband with Parkinson’s?”

“Actually, dear,” she teased, “you’re never in my wildest dreams.”

I tell friends that if someone in my family had to have Parkinson’s, I’d willingly take the short straw. I’d make a lousy caregiver. Hedy, on the other hand, is superb.

We’re closer now than ever. God’s ways are not our ways.

At the time of my diagnosis, Dad had had Parkinson’s for 10 years. He died of its complications at age 84 in September 2006, four months after my diagnosis. I never told him I had the disease.

Despite having been exposed to Parkinson’s in my family for years, I knew surprisingly little about it.

“How long do I have (to live)?” was my first question to my doctor.

Several months before the diagnosis, I’d purchased season tickets for my grandson and me to attend University of North Carolina football games. I was planning to spend much of the fall of 2006 at our kids’ residence near Chapel Hill.

After the diagnosis, I second-guessed my decision to attend those games. Could I navigate steep, crowded stadium stairs? What if I fall? Nine years later, I’m still traveling and still climbing stadium stairs.

I’ve put excess caution aside. I hold to the axiom that what’s delayed now may be lost forever.

Since my diagnosis, many good things have happened. Five of my eight grandchildren have arrived. I’ve made at least 100 friends who have Parkinson’s. I’ve taken time to appreciate life’s small blessings. I’ve grown closer to every member of my family. I’ve traveled the world. And I’ve fallen in love with my bride all over again.

April is national Parkinson’s Awareness Month, and I am reminded that I have much to be thankful for.

JIM CARNETT, who lives in Costa Mesa, worked for Orange Coast College for 37 years.