Tag Archive: Parkinson’s


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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Trying CBD

I finally got weeded off a ton of medication. I dropped three-quarters of Gabapentin, halved the Zanaflex, Celebrex (to which I wonder if it works and that some guy stuck a placebo in the casing), and all of the Carbidopa-Levodopa. In theory, Carbidopa-Levodopa has withdrawal symptoms if one reduces too quickly but suffice only one night and one day; I experienced no significant issues. In truth, I experience fewer Parkinson’s problems without Carbidopa-Levodopa than I did with it. Now I am down to several 220mg of Aleve and 2ml of CBD Oil purchased from Medterra. (No, I do not receive any royalties.)

The CDB Oil was new for me. I’ve never been known to shove ‘alternative’ medications down my throat but became intrigued by CBD Oil after watching the Larry Smith (aka ‘Ride with Larry’) YouTube video. Mr. Smith was a former police captain who had Parkinson’s. In the 2012 video, Mr. Smith’s symptoms abated within a few minutes of inhaling some form of cannabis (maybe a vaping type instrument). Unfortunately, eight years later, Smith passed away, but I wonder if cannabis treatment assisted him or not. So, after about 80 hours of research, l ordered some CBD from Medterra. When asked if I could be monitored through my Neuro’s office staff and expertise, I was kindly instructed not to return – that I would be alone.

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Ice Cream and Anhedonia

Sorry I have been offline for several weeks. It’s not that I’ve been medically indisposed. And while the pain did follow me, I remained upright and above ground. Instead, I travel to Tucson to collect my father’s remains, spend time with my mother, and worked remotely as though I were in the Central Time zone. 

Working under Central Time while in Tucson presents challenges. No matter what you do, you must plan two hours ahead. For instance, for an 8:00 AM meeting, you must be prepared at 6:00 AM. For me, the alarm rang early – like really, really early. Some days, I found myself sliding out of bed at 4:00 AM, calling it a night by 8:00 – 8:30 PM. The schedule was extraordinary.

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Since Sunday, I have been feeling fatigued. It is simple to describe: On and off feelings of profound fatigue or weariness. That description does not include mental fatigue, the type where I sit at work and ask what I am doing? I have compared such fatigue to being listless, drained, too tired to walk, and too tired to think. A cancer patient was so lethargic that she sent an email canceling her treatment appointment, to which her physician called, stating her body required fluids. “Ah,” I wondered aloud, “Maybe I require fluids.” However, upon seeing several empty bottles of ‘Ice Mountain’ natural spring water (or so they say), I quickly doubted my conclusion. I know what ‘it’ (the symptoms) meant, but I have been so adept at postponing anything relating to dying that I put it out of my mind.

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The company completed its reorganization this week. Company management phrased the downsizing as a ‘proactive initiative.’ Downsizing has many different names and acronyms: realignment, restructuring, resource allocation, employee assessment, redundancy reduction, organizational shifting, transformational initiatives, future position, planned efficiency, and workstream synergies. The list is endless. Our CEO (who already makes 25 million a year) secured a couple extra million dollars for his trouble. And those receiving the ‘pink slip’ secured a few additional weeks of pay, a smidge more healthcare coverage, and an escort to the door by company security. I didn’t get kicked to the curb and appeared steadfast through it all. But no one knew I was in ‘brain fog.’

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