Goldberg: Parkinson’s disease: No walk in the park

A later trip to the neurology office (after I received a battery of tests from other providers to rule things out) began with a list of questions about my symptoms:

Do you have tremors?

Do you have muscle cramps?

Have you lost your sense of smell?

Do you have trouble sleeping?

Do you thrash around in bed or act out dreams?

Do you have a soft or low voice?

Do you have trouble with balance?

Do your legs feel leaden and weak?

Do you have “mask face”?

Do you have constipation?

Did you suddenly sing like Ethel Merman?

Did you suddenly start wearing your underwear on the outside?

You probably already guessed that I am kidding about the last two questions. But I am deadly serious about constipation, which affects most PD sufferers. Never have I wanted to vanquish a foe more. Bring on the magnesium citrate, bring on the prune juice, pull out the heavy guns. Unfortunately, we’re all stuck with it.

PD is a progressive disease. The symptoms vary for everyone, also in degree. It is an elusive and powerful disease, hard to pin down, difficult to diagnose. Although primarily a movement disorder, PD is also linked to depression, anxiety, cognitive decline and other conditions. There is no cure. The PD medication I take is called carbidopa-levodopa, but I prefer my name, lopa dopa, which rolls off the tongue better, is easier to spell, and, let’s face it, is a lot more fun.

Medications and various treatments (especially exercise) can slow it down, make the symptoms more manageable. There are many organizations you can go to for help that are far more expert than me, like, for example, The Michael J. Fox Foundation (www.michaeljfox.org). Talk to your medical professionals for medical advice about PD, not to old duffers like me who happen to have the disease.

Before I go off on another tangent, I want you to know that I answered yes to every question at the neurology office. There were also definite signs of possible PD, confirmed by the neurological test I was then given. I was shocked, rendered numb by the diagnosis, my mind racing.

Well, there are worse things than Parkinson’s. If you’ve ever spent an evening with an insurance agent, you know what I mean.

I always try to be optimistic (that’s very important). But sometimes I have dark thoughts about my envisioned eventual deterioration, perhaps an untimely death — but these thoughts pass quickly, my anxiety tempers, my reasoning rights itself and I feel like my old self again, whole and present in the moment.

Still, one nightmare remains, which I experienced a few months ago. In the middle of the night, an immovable force is trying to break into my bedroom through a locked door. I hear crashing sounds and wonder if it’s a savage animal. I block the door and brace myself against it with all my might. The door is cracking apart with every thud from the force. I strain against the door, trying to hold it back, but it is just too powerful and gradually I start to lose ground. Then I wake in a cold sweat, breathing hard and scream “get out of here.”

On days when you don’t feel like doing anything and getting out of bed takes supreme effort, try to hold onto the feeling you get from the simple moments in life: A walk with a friend in the sunshine; hugging your spouse, children and grandchildren; petting your dog; doing one-handed pushups; and so on. Try to sustain that feeling when darker thoughts intervene. You’d be surprised at what can happen. No matter what, don’t give up, never surrender.

Best of all, I have my wonderful wife, Kate, who supports me and loves me, and somehow puts up with me. Kate, I say, do you ever ask yourself why you married me? I kiss the ground she walks on. I also have a supportive family and friends, and the whole community of Dubuque, who watch over me. I must be living a charmed life.

In the fall, I’m sitting on a bench on Heritage Trail, my eyes shut, taking in the warm sun on my face. The trees shimmer, leaves in full color, the brightness of the sun more intense, decreasing as clouds move in, creating a welcome coolness. All is quiet, just me and the trail. I’m suddenly filled with energy, rising from the bench and begin what the physical therapy professionals call the “BIG walk,” arms moving in an exaggerated swing, long strides, in perfect rhythm, straight as an arrow but gradually I start veering to the left, wobbling a little, but I strain every muscle to try and right my course. Sometimes I do, and sometimes I don’t.

I continue to walk. I feel strong. I waiver. I fall. I rise. I walk again.