Category: Parkinson’s


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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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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Eighty percent (80%) of those impacted by osteoarthritis experience pain. The most common symptom is acute pain – often deep-searing pain. For the longest time, it was hard to relate. Sure, my muscles exploded in pain, frequently from the simplest of movement. The most extreme form of osteoarthritis pain I experience comes from walking when the pain becomes so significant that the body stops whatever it is doing and says, “F*** it. We’re done. I am done until everything calms down.” I have always been grateful my body has down in the middle of a New York City crosswalk during rush hour, running from an avalanche, or just as a tsunami approaches. (Although sitting on a toilet during a Los Angeles earthquake was my biggest fear). I always presumed I experienced ‘maxed out.’ I was wrong.

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Dying is hard. The body refuses to give up. For others, the physical part of death is not the barrier. Instead, information processing is the hardest culprit. There are too many issues to address before the end. In other words, we run out of time. ‘Death’ grabs us when least expected and refuses to release us. Describing my process is like being in the grip of a boa constrictor.

Boa constrictors are not venomous. Instead, they squeeze the victim to death. The squeezing overwhelms the circulatory system, and the prey dies from ischemia. And therein I lay. I came to the acknowledgment this week that my body is slowly giving way. Life a slow-motion film, the amount of dizziness, the pain just below my rib cage, and the persistent fatigue slowly crept in each subsequent week. I sense it. No. Correction. It squeezes. I feel it. There are some days when I wish to fall asleep and call it a life.

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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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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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