Category: Parkinson’s


One of the hardest things about having a life-threatening disease is determining when to tell family. As many of you know, I’ve been hiding Parkinson’s and my cancer for some time, having told roughly nine people. And when you do, the thought of what to say is on the forethought of the brain. “Hey, the weather is going to be great this weekend. Daily high temperatures will be 84 degrees. And, oh, by the way, I have cancer. So, wanna grab a cheeseburger? There’s a great palce down the road?”

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We Don’t Know

“We don’t know” comes in many forms. For example, the car mechanic quizzed about a part failure often states they don’t know why it failed. The heater-air conditioner technician told me two weeks ago that he did not know why the blower motor was leaking oil. “It’s old.” Children who spray-painted the car are asked why often retort with “I don’t know.” Then there are medical doctors.

“Doctor, I was cutting vegetables. My right wrist, elbow, and shoulder hurt painfully with each cut. So much so that I had to stop.” The doctor looked at his computer, “That’s a great question.” The comment ‘that’s a great question’ is like, “We don’t know.” Of course, the pain could be tendinitis, Carpal Tunnel Syndrome, or “You sleepwalk and play drums all night.” A lot of times, doctors don’t know.

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A New Normal

Eventually, everything in the body becomes unreliable,” my neuro stated. It’s a hidden truth of nature. In our teen’s we laugh at it. In our twenties, any notion of time is philosophized over during bartender’s last call. In our thirties, the term slowing down was bantered watching old geezers struggle playing softball at company games. In our forties, we begin to struggle when a few kick the bucket, usually due to cancer or maybe a car wreck. It hits home in our sixties when were told we’re the one dying.

Your body is becoming unreliable,” I repeated walking to my car. “I cannot change that,”  I repeated to myself. Only then do you see the elders of yesteryear stare you in the face and hear the laughter. I swear I heard them. I swear I did. “Sucks to be you,” they snerted (a word my ex invented) at me as I drove drove home. Pulling into my underground parking space, I turn the car off. Pausing for a moment as my hands rested on the steering wheel, I reflected. I have no problem distinguishing the past from the present as Rod Serling narrates, ‘There’s signpost up ahead. Your next stop, the Twilight Zone!’ in my mind.

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As new Parkinson’s symptoms peel back any notion that my body can live in some delicate truce, I continue to reassess what I can and cannot do. For example, an Arizona State University study of Muhammad Ali’s public speaking revealed Ali exhibited symptoms of slowed and slurred speech several years before diagnosis. Researchers determined that Ali’s syllables per second slowed by 26 percent over thirteen years. But slurred speech was never my symptom, at least at this moment.

This week, left-hand tremor has become more prominent with the hands at the sides. A ‘Keyesence Detection’ test revealed, “The person has characteristics in their typing similar to people with early to mild Parkinson’s Disease. Tremor and movement exceeded normal ranges. An asymmetrical tremor of 4-6 Hz suggests Parkinson’s Tremor.’ But I already knew this. A tremor while typing has been the bane of my existence for several years. Tremor with the hand at my side has not. That’s new. That means Parkinson’s has progressed, even if ever so slightly.

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So, you might ask, “What the hell happened to you?” It’s a fair question. Yes, I know. Disappearing for 28 days is not something friends do to friends. Not even a peep. Honestly, I could have said, “Damn those extra shifts at the office.” Or, “Hey, I tripped down a set of stairs and wrecked my knee while attempting to avoid the leopard sleeping on the first floor.” Great story. Not true. I could have stated that I volunteered in some exotic land, assisting clinicians battling COVID. Another great story. All fiction. Instead, my excuse comes down to something easily stated but damn hard to combat: Brain Fog.

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The first time ‘If you don’t complete this, there will be changes’ was spoken was last week. Then, seven days later, the exact phrase was uttered again. So, in essence, my new boss threatened me. And even though I excelled at every performance review since starting with the company, working onsite through COVID, through my father’s death, two days post-tumor surgery, through Parkinson’s, through significant arthritis pain, that God-forbid that this one project, should it not be performed to perfection could end it all. So I wouldn’t say I like theoretical, but that’s what I think about.

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Chopsticks

“Chopsticks,” I murmured to myself. Six months ago, I could use chopsticks so well no one would have known I had medical issues. However, last Friday, I could barely manage to hold and align chopsticks. Everyone looked at me out of the corner of their eye. Smiling embarrassing so, I shifted to laugh it off, “Chopsticks.” Chopsticks wasn’t the word I wanted to use: I wanted to cuss. I wanted to shout, “F**k it” or “God damn it.” However, in the civility of dinner, I muttered, “Chopsticks.”

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Parkinson’s scared me more than cancer. Those words bored through my thinking in late February 2020 and remain persistent now. Unfortunately, nearly every terminal patient who’s taken a stoic stance (remaining in control), there comes the point in time during the disease when you lose control. I remember watching Ted Koppel’s Nightline program when Morris Schwartz (Tuesdays with Morrie) talked to Nightline host Ted Koppel. “Well, Ted, one day soon, someone’s gonna have to wipe my ass. It’s the ultimate sign of dependency. Someone wiping your bottom. But I’m working on it.”

Control. I thought of the word ‘control’ when my Neurologist informed me I moved from Parkinson’s Stage 1 to Parkinson’s Stage 2. In Stage 2, Symptoms start getting worse. Tremor, rigidity, and other movement symptoms affect both sides of the body. One can remain independent, but daily tasks become more difficult. And that’s where I’m at: Life is more difficult, more complicated, and more painful in the ass.

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About Luck

A few hours ago, I found a box of old pictures. The first picture had to be twenty years old and looked like someone else. “Wow, I’ll never be that person again.” Followed by, “Yeah, that person does not have death shadowing my every movement.” Still, when others are seen enjoying activities without reservation, I do not become overly nostalgic. Sure, I once enjoyed running, playing football, or swimming, but I know those I see will one day be like me, someone for whom the bells have either tolled or will toll.

Admittedly, I have thrived where others have not. (Or, I have thrived up to this point.) I could claim that my ability was due to modern medicine or that I was such a physical specimen that my body was bound to overcome anything thrown at it. But the reality is likely to involve a good dose of luck. I hear this all the time when walking the ICU. If one dies, a lack of luck is blamed. “Ma’am, we did our best, but his luck ran out.” If one survives, ‘luck’ is stated differently, “Ma’am, we’re unsure why he survived, but a lot of things worked in his favor.”

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Except for Aleve and Tylenol, this past week has been living medication-free. However, the deceptive nature of living with Parkinson’s, Multiple Sclerosis, Arthritis, and tumors percolate inside. If you look at me, you’d be convinced by how I look like the picture of health. However, there have been nights when I cheated on my vow of medication-free. For example, last night, I had to sleep in my recliner for two two-hour periods due to pain by downing a single tablet of Tylenol #3 (300 mg of Acetaminophen and 60 mg of Codeine). I guess medication-free is not medication-free when one has to sneak in 30 mg of Codeine now and then, but when your body gets to this stage of pain, many will do what they have to do.

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