Mesa Musings: Lucky to be so loved

On a couple of occasions I've mentioned in this space that I have Parkinson's disease. I was diagnosed nearly five years ago.

Parkinson's is a brain disorder that manifests itself when certain nerve cells die or become impaired. The cells produce dopamine, a chemical that permits the body fluidity of movement.

Signs of the disease include tremor or shaking, slowness of movement, rigidity or stiffness, and balance problems. It can also reveal itself in a shuffling gate, muffled speech or diction and depression. Cognitive issues may be realized as well, to include dementia.

About 1.5 million Americans have the disease, and 60,000 new cases are diagnosed annually. Chances are you have a family member or friend with Parkinson's.

But it's also understandable if you know little or nothing about the disease. I was clueless when my father was diagnosed with Parkinson's more than 15 years ago. He died in 2006.

I remember once holding open a restaurant door for my dad and several other family members. His progress through the doorway and into the lobby was labored.

A family behind us paused as he made his way. I continued to hold the door for them.

"Parkinson's?" the gentleman inquired as his family entered.

I nodded.

He gave me a look that said, "I'm familiar with what you're going through."

Seems I inherited my father's pronounced forehead, blue eyes and knobby knees. I may also have inherited his Parkinson's, though researchers are not yet completely persuaded. My maternal great grandmother also had the disease. A double whammy. It exists in both branches of my family tree.

But the disease may also have an environmental component.

My best friend from high school and college — who grew up just blocks from me in Costa Mesa — was diagnosed with the disease a year ago. What are the odds of that?

He called me last year and told me that friends and family members had noticed in him some "odd" behaviors. I asked him to describe his symptoms, then urged him to see a neurologist. The disease was confirmed.

We both drank the same Costa Mesa well water in the 1950s. Crop dusting took place in certain areas just outside the city.

Were those contributing factors? Who knows.

It seems that two-thirds of people with Parkinson's are men, so there's another strike against me. Actually, it's probably a blessing that men are more prone to Parkinson's than women.

The Parkinson's support group I belong to has 16 who regularly attend. Our gender ratio mirrors national statistics: 11 men, five women.

The men are fortunate. They have wives. Those wives, possessing palpable love and compassion, serve as magnificent caregivers. Each plays an indispensable role in her husband's well-being, and all the wives faithfully attend our support meetings.

The contrast between female and male caregivers in our group is shocking.

Only one of our group's women with Parkinson's attends with her spouse — and only intermittently. The other women — all of whom are married — come alone or with a professional caregiver. Perhaps some husbands are unable to take time off work.

Several months ago a newly diagnosed woman joined our group and shared her concern that her husband is in total denial. Not surprising. He seems to be masking his anxiety with indifference. She wept as she related her situation.

I know how vulnerable one feels immediately after diagnosis. I told her that men often have no idea what to do in these types of situations. Speaking from personal experience, I said men feel inadequate or even paralyzed at the prospect of providing care.

I must say that I'm grateful that I'm the one in my household with Parkinson's and not my wife, Hedy. If the shoe were on the other foot, frankly, I couldn't measure up to her extraordinary care-giving capacity. She's my rock. I don't have the disease; we have the disease.

I'm concerned for our new female support group member. She needs — and deserves — her husband's best effort! He's not giving it.

Sometimes, guys, we just need to man-up!

JIM CARNETT lives in Costa Mesa. His column runs Wednesdays.

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