Category: Parkinson’s


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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It was late summer of 2010 while walking near the Hudson River shoreline when I heard Chris Carter talk about his retirement. Carter was on the Mike & Mike Show when a host asked Carter how he knew it was time to retire. “Mentally, I was still sharp. I could read the defense, understand the play, and mentally perform. Unfortunately, my body was no longer responding to what I was telling it to do. There was a delay, a gap, or in some cases, an inability to perform. That’s when I knew it was time.” I couldn’t relate. And for the better part of a decade, I never understood what Carter meant. Very few will ever experience a mind-body relationship like professional athletes. But these past ten days have provided one hell of an education. 

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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 day-in-day-out process of Parkinson’s decline is slow and methodical. Parkinson’s is a slow progressive pain in the behind. The stage at which the symptoms appear, progress, and develop is tedious. Last week, brain fog. This week, not so much. However, this week, my hands’ fumble. Next week, maybe they will not.

My case manager got to the heart of the situation, “As you experience your body declining, ‘What are your thoughts?'”

“It’s confirmation my body is dying.”

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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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There are times I wish I could go to sleep and not wake up. Not that I overtly want death, but rather, some days I am so tired to get up. Many days are rarely the same. I feel great by day. By night, my knee and Sigmoid Colon ache, and a rush of blood oozes forth that’s accompanied by a continuous backache. All of which forces surrender by 8:30 PM with a silent scream, “Fuck it.” Yet, the weird or odd timing of statements between friends compound these endless cycles. 

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Nearly every person with a significant disease experiences peaks and valleys. One is likely to have weeks or months when everything is fantastic, bringing some level of normalcy. There are other times when you understand what’s coming is damn serious. I would categorize this past Thursday [February 11] as ‘other.’

I had been on a plateau for weeks, a state of neither God awful nor wonderfully great. Suddenly, I felt wet. It turns out I was bleeding. I had uncontrolled rectum bleeding oozed from the rectum and a dull pain emanated from the lower left part of the abdomen, probably either in or near the sigmoid colon. Diverticular bleeding occurs in the colon and produces bright red or maroon bowel movements.

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Here’s the deal. I have a conundrum of thoughts. These thoughts are in no particular order. As a result, my readers will have to accept a free form of ‘whatever’ today. Blog writer Julie Williams once said she felt brokenly alive. If two words ever summarized my life at this moment, ‘brokenly alive’ would be them.

I know it’s only February, but 2021 has been a crappy year. Not only was I was extremely ill for a large portion of January, but several people I have known and loved have died: My father, several coworkers, and my first wife (whom I loved dearly). And then my ex-mother-in-law suffered a catastrophic stroke. My ex-wife’s death hit hard. So hard that although I am supposed to be dying, I keep living. Survivor’s guilt is shredding my soul. 

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And Your Dream Is?

When you are a walking medical wonder, you tend to take every day as an adventure. Some days will suck; other days do not. I don’t wallow in pain. Most never know I have a specific medical issue, let alone a sandlot’s worth. Flippant of medical problems plaguing my body, I placed a ‘GoFundMe’ request that would allow me to hike both the Appalachian Trail and Continental Divide Trail in consecutive years.

After watching ‘A Walk in the Woods’ and ‘Wild’, I was convinced many would contribute to a self-imposed work sabbatical, fund my opportunity to hike both trails, and allow me the opportunity to write books or articles. A teeny-weeny part even envisioned a blockbuster movie deal. Sixty days later and zero donations, I realized many considered my request akin to the ‘Powerball Reimbursement Fund’ or ‘Let’s Buy The Loin’s’ [as in Detroit Loins]. Having no desire to purchase an NFL team, I do think of those who did something similar.

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To New Years

“God,” I sighed. “The office doesn’t return from remote work until April 2021 (if we’re lucky). Why drop off dry cleaning?” I muttered as I pounded the steering wheel. I remind myself of where I am on the road to eternity, especially when my heart gives small instantaneous pains. In seconds, they come and go. Each trigger (event) reminds me there is no end. There is no respite. And that’s the crux; five years post-osteoarthritis diagnosis, nearly two years into a tumor diagnosis, almost a year into Parkinson’s, and barely a couple of weeks into heart disease, I remain cloudy upon what precisely ‘new year’ means.

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