Tag Archive: 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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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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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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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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A week has phased since my last blog post. I could have generated a few excuses, but none fit. I awoke Thursday morning stiff. Friday through Saturday, my neck felt like a volcano near eruption. I couldn’t hold a thing, had a hard time moving, and every muscle in my body regurgitated at the thought of moving, anything. Staying awake was difficult. Awake one moment, drowsy the next, then awake again.

Sleeping provided respite. I slept ten hours from Friday night through Saturday morning. Saturday to Sunday, thirteen hours. I felt comfortable enough not to use the restroom, though I did. When the act of laying down caused more grief than getting up, I nudged to the bed’s edge and stood. Shuffling over the cold hardwood floor provided momentary relief as I stood under a hot shower and wondered, “What the f***?”

I debated whether the Parkinson’s or osteoarthritis was the cause. Rigidity is seen in many Parkinson’s patients. Though not entirely understood, researchers believe stiffness is associated with the reduction of dopamine. If that is the case, then my Carbidopa-Levodopa failed and I should demand a refund. However, osteoarthritis pain can occur at either rest or night. In my case, nearly every part of my body was on fire, and more than once, I wished a ‘water scooper’ (aircraft that drops water on a forest fire) would drown me in Aquafina (purified water). Having inside knowledge of medical science, I know osteoarthritis usually does not affect the wrists, elbows, or shoulders. In the end, neither argument won.

Like many suffering in major illness, I am left with daily challenges. Whatever body part that’s inflamed today may not be tomorrow. Others experience it differently. Buddhists believe suffering is part of life. Pain is expected. Therefore, if a person experiences pain calmly, he can attain higher states of being without becoming emotionally distressed. At 2:26 AM, not sure I can buy Into that argument while every limb screams, “Holy Mary, Mother of God.” A pancreatic cancer patient once described abdominal and back pain, “I had woken up in the middle of the night screaming because of the pain, terrified to move because each time I did, it hurt more. It felt as if someone was stabbing my lung over and over again.” Such stories are not uncommon, and it’s hard to neatly fit spirituality when nature Is gnawing upon the body.

Even though I didn’t complain, the prospect of living under this type of pain is hard to fathom. I know pain is part of our human living experience. There is no way to escape and we often feel victimized. Being in pain also makes one anticipate further discomfort in the future and reminds us how finite our life is and of our fragility. Therefore, I chose my pain to be ‘teacher.’

My educator will help me to prepare for the pain that might be present as I die. Given a chance, I will try to explore whatever lessons that bring my life into greater focus and meaning, teaching me strength, patience, and giving me compassion and humility. Of course, I will take whatever medication is prescribed. Yet, maybe this pain level will allow me insights to endure, make me more mindful, and see the road ahead. Like others, I might even view it as a gift, like many of those dying realized their pain and suffering made their relationships more valuable and helped them reorder priorities.

There are numerous spiritual and psychological approaches to pain management. Medications make it possible to manage pain without diminishing awareness and provide one time to strengthen practice, be with others, and not have pain or be of an unclear mind. In such ways, I often say to myself: “I am in pain, but I am not suffering.” I say this to remind myself not to amplify the pain by building Some grand story. Rather, I can become ‘friend’ to my pain. Reach out to it. See what it needs. I may not know what to do, but the pain might. I can give it latitude, and try to see what it may teach. Therefore, I can use the experience of suffering to develop compassion for the lives of others who have pain like me.

Parkinson’s and constipation are brethren. These brethren dance hand-in-hand, just like that couple’s wedding you attended, knowing all the while of the painful divorce forthcoming. In theory, not all Parkinson’s victims experience constipation. I often reflect on this medical tidbit while sitting on the toilet as my body tries to crap the life out of me. Over the months, I’ve experienced dark blood, red blood, little blood, and no blood. I never thought of dancing after a bowel movement, but do when experiencing any movement without blood. My doctor grimaces at my descriptions and reverts to recounting protracted dissertation learned from some medical textbook seventeen years prior.

Common in Parkinson’s, constipation results from the slowness of movement (bradykinesia) and muscle rigidity. My physician noted 65% of Parkinson’s patients get this condition. “Not me,” I retorted. “I have it 100%.” This bit of levity goes unnoticed as she regurgitates a litany of god awful suggestions guaranteed to improve my situation. Recommendations included a dietician to advise on diet and fluids, a physiotherapist to help with abdominal exercises for passing stools, a speech therapist for any swallowing problems, and an occupational therapist who can suggest ways to overcome eating and drinking difficulties.
I’ve neither experienced any problem consuming kettle chips nor beer. Both go down easy. I am unsold on a physiotherapist, as I can barely walk 60 yards without extreme pain. My speech appears solid, “Hey, bartender? Draw me another brew.” I could swallow a laxative, but my only real experience with laxatives occurred in the military watching Calvin (whom we loathed) shit all night after consuming ninety percent of a brownie pan laced with Exlax. Therefore, I consulted my help desk: Google. When in doubt, ‘Google.’

Google tips were undesirable. First, relax. When on the toilet, it’s essential to relax. Don’t become preoccupied with your movement’s process. However, it’s hard not to be preoccupied when you can’t shit. Not sure about anyone else, but at 1:00 AM, sitting on the toilet, one gets somewhat preoccupied. Secondly, avoid medicines such as narcotic pain relievers, antidepressants, aluminum-containing antacids, blood pressure medications, drugs for Parkinson’s disease, and iron supplements can also cause problems. (No Sh**!) Avoiding them would kill me. The only medicine I’m not ingesting is antidepressants.

I wish I could have seen the clinician’s face upon reading my 140 character (or less) text via the healthcare app. “Request antidepressant. Thus, I won’t feel depressed about not being able to sh**.” I received a one-word response, “No.” They were kind to include a ‘cut and paste’ diatribe on “… drinking at least four to six glasses of fluids a day. Water and fruit juices are best for preventing constipation.” I wanted to reply, “What about beer? Beer has water?” However, I remember Christ stipulating not to put the lord to the test and turned to a better path.

I contacted a former Buddhist teacher in San Francisco. After the usual pleasantries, I asked about her natural remedies to treat constipation. “Buddha was considered a great physician and psychotherapist due to his compassion and wisdom,” she reflected, seemingly lost in the moment. “Therefore, you must know the suffering, abandon the cause, obtain cessation, and follow the path.” (Goddammit. I just need to sh**.)

In my physician’s waiting room, someone highlighted Anthony de Mello. It was placed on old Gideon’s Bible, you know the book all suddenly searched before receiving the “you’re pretty screwed” diagnosis. Highlighted in yellow, de Mello said, “Most of us suffer in the spiritual life because we do not accept ourselves. Maybe this is the biggest obstacle to the spiritual life. We cannot see our beauty or our power unless we see it against the backdrop of god’s loving us.” I’ve never considered my 1:00 AM toilet sessions as a failure to accept myself. Should I accept the fact that I can shit, can’t shit, or could shit? Certainly, most feel more power post-movement as opposed to pre-movement. Ugh … this is insufferable.

I decided to return to drinking, which eliminates suffering (albeit temporarily). “Hey, bartender. Draw another brew. I’ll be right back … Have to hit the room.” And, “Can I get an order of kettle chips?”

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