Tag Archive: 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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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?”

On an early weekend morning, I rolled over to the edge of the bed and realized I couldn’t get up. (At least initially I couldn’t get up.) “F●●●,” my body groaned. I reached for my cane, pulled myself upright, steadied on the bed’s edge.” I am getting old. Quickly. There’s a sobering likelihood that I will be one of the seven 65-year-olds who will be disabled before death. I’m not looking forward to it, but I find myself continually negotiating with ‘Father Time’ for a snippet’s reprieve.

Nora Ephron wrote, “What I believe … is that at a certain point in life, whether or not you’ve been diagnosed with an illness, you enter into a conscious, ongoing … negotiation between the two … This negotiation often includes decisions as trivial as whether to eat the second piece of pie as important as whether to have medical treatment that may or may not prolong your life.” I’m at a point where second helpings are intolerable. I know it. My body knows it. Call it intuition. Call it the ‘sixth sense.’ Call it, ‘Joe.’ Call it whimsical. Doesn’t matter. Most dying can name the time, and date life shifted.

July 15th, my body shifted. My back, stomach, intestines, and right hip awoke pissed off, as if to say, “We’re in charge, Obiwan. And we decided to drive off that cliff in the near horizon.” My former sister-in-law described a similar feeling. She awoke one morning, feeling something wasn’t right. “It was an ominous feeling,’ she casually noted during an afternoon lunch. A little over a year later, cancer claimed her life. Therefore, any notion that “70 is the new 50” never occurred to me, as I never expected to get to 70. My physician will test whether ‘60’ is my never ‘70.’

Several tests, including complete blood count and tumor marker, have been ordered. I won’t stumble into the results. I won’t get to read it online before hearing from my doctor. Post-results, I will hit ‘pause’ to wait and see what happens. I’ll internalize everything until I know just how true this ‘intuition’ (my decline) turns out, for I do not want to claim to be a victim. 

I never thought that anyone would be sorting through my life history 30 years ago. And at this point, there’s no optional editing that can be performed. History is written. I know how the scales of justice both God and man weigh each detail on trial. Afterward, everyone alive will understand I was no victim. It’s unavoidable. Accept it and move on. 

Moving forward is an interesting concept. Buddhists believe most illnesses are primarily karma’s negative energy-consuming the sufferer. If so, I have acquired a s●●●load of it. Such karma stems from greed, anger, and stupidity, including eating pizza, beer, and onion rings. I suppose a lot of cancer is avoidable. Not smoking reduces lung cancer significantly. Avoiding red meat reduces other forms of cancer. Protection from sun exposure reduces skin cancer. For me, cancer is … cancer. Just is. It’s part of life (at least mine anyway). I will take this situation like others and make it part of the path. The path is exclusive. It’s not filled with only right situations, but any situation. Fortunately, I have time to prepare. 

When told of the odds of my survival (a couple of good years), I instructed my physicians I was not interested in hearing about weird drug trials, new medications, or life-saving operations. What good would it do me? I decided to live until death. I refuse to get waylaid by the kind of emotional baggage that frequently accompanies others. Life is short. Admit your wrongs, make amends when you can, and live until death.

After learning being diagnosed with “high-functioning” autism, writer Helen Hoang never told her mother. “I hadn’t really known how to tell her. More than that, I’d feared her reaction, so I’d simply avoided the topic around her altogether.” When I was diagnosed with a tumor last year and Parkinson’s this year, only five knew of my tumor, and only three (my doctor, my case manager, and a friend) knew of the Parkinson’s. Only three knew both, those being my doctor, my case manager, and a friend. Avoidance will either be my enemy or friend.

My doctor has routinely asked why I haven’t told any relatives. Chagdud Tulku Rinpoche said, “Death and dying is a subject that evokes such deep and disturbing emotions that we usually try to live in denial of death.” My brother is not particularly adept at dealing with it. And to be fair, most of us aren’t. Dealing with a terminal illness is hard enough without family instructing me to suck it up, swallow some Vitamin C, or work it out. Such a pronouncement would change every interaction; none of them are genuine. When I told my brother about the tumor, he was driving on the highway after flying lessons. Rather than waiting for a more suitable time, he listened to my diagnosis, demanded a second and third opinion, complete several other medical tests, and get back to him. He never called again, even when the date of the surgery came and went. The process of hiding or masking fits better in America’s society.

My military call-sign was ‘Chameleon,’ meaning I could almost on cue, adapt to any situation. I’m very good at it. I learned to blend as a kid because I saw people treated me, ‘different,’ ‘not socially adept,’ etc. Underneath that easygoing facade, was a soul struggling and found the minutiae of social interaction draining. The military changed that and trained me to adapt. It’s an acquired skill I continue to leverage and flawlessly execute.

I’ll admit, for months, I have considered coming clean. I almost came clean to my boss at work about the Parkinson’s diagnosis, but I know its impact on my career, for he was the second person informed of the tumor. Beyond that, I don’t want to have my illness define me, turning every conversation into a series of “how are you?” and every email into “here’s the latest cure you must investigate.” Nor do I want someone telling me to suck it up. Such conversations would provide neither meaning nor purpose. I aim to find out what the truth is for me and to live without vulnerability.

Vulnerability mustn’t be turned against me. It’s bad enough to battle a tumor Parkinson’s at the same time. I am unsure if I can fend off youth’s naysayers, demanding I fit into their mold. I don’t want to be the guy who seeks every nuanced therapy that provides marginal to no benefit. I want to live but live under my control, not under another’s umbrella.

Before the end of the year, I will tell my family. In subsequent days, conversations will become harder, and silences will grow. Relatives living in Chicago, Wisconsin, Florida, and elsewhere will email and either express regret or outrage at being uninformed. The ultimate question for every conversation will be, “Why?” And, it’s a fair question.

I have read many blogs where readers posed such philosophical questions of determining the proper moment to inform others of their terminal illness. Blogger Molly Kochan stated, “I have chosen to navigate this journey privately, with a handful of supportive friends and family. It was important to me to not be seen as a “patient” or as cancer.” I do wonder if my selfishness would impact others to such a degree that those affected would never move on. And so I say, “Yes. Eventually, they would find it within themselves to move on.” Therefore, I hope everyone focuses not on my final days (or year(s)), but rather upon leading the kind of life that will impact others. And should that be the result, then I would be truly inspired.

Almost everything in Buddhism boils down to fear. Suffering is caused by fear, and either panic or freezing stops us from speaking up against injustice and often causes people to leave the path of goodness (i.e., the universal truth). When we get too deep, fear smacks us across the face and says, “This is no longer good.”

In meeting my case manager for the first time since March, I admitted to a host of fears: mainly losing my compass (i.e., the fear of the unknown); that I hadn’t processed my Parkinson’s Diagnosis; the fear of being unable to work; and, (after seeing many COVID-19 patients) the fear of dying a long and painful death (as opposed to quick and easy).

The compass throughout this ordeal was Ms. K. I have been successfully able to communicate clearly and thoughtfully since early 2019. As advancing pain presses, I fall asleep during meditation and fail to seize the opportunity for reflection of world’s events. (Ok. Maybe it’s about my circumstances.) 

“I know she’s still there,” I told my case manager. “. . . but I can’t communicate as clearly as I could before. I want her to know that I miss her and our conversations. However, it seems I’ve misplaced the phone number.”

In M*A*S*Hs’ “Pressure Points” episode, Sidney Freedman claims he’s conducting fact-finding medical research on stress. After making the rounds, Freedman meets Col. Potter. 

Truthfully, Potter called Sidney. Potter shares his feelings that his surgical skills are “. . . a lot less perfect than I can accept.” He’s worried but insists nothing’s wrong and wished to vent. Near the episode’s end, Potter tells Freedman he’s anxious about losing his touch (as a surgeon), and the idea of performing surgery fills him with terror. 

I’ve joked to colleagues and friends how surprised I am that my employee badge still works.

“Hey. How was your weekend?”

“Great,” I noted.

“Anything new or exciting?”

“Well, my badge worked.”

As M*A*S*H’s “Pressure Points” episode concludes, Sidney reminds Potter that someday he will get too old to be a surgeon. At this moment, the fear of failing has taken precedence. Whether or not that affects him is purely under Potter’s control.

My world is not as nuanced as a surgical room, for it is abundantly clear people are unobservant and aren’t paying that much attention. I come and go, and any notation of a trembling hand can quickly be dismissed to a remote COVID shift work or lack of sleep. When my work starts going downhill, I’ll have to recognize that the time has come to discuss the issue. I know that as time goes on, it’s going to get tougher to do the job. However, fear cannot be the driver of that moment.

As noted, there are other issues besides work that require my attention. However, it’s essential to remember Buddhism 101: fear must never be the driver of anything.

~ Fear does not prevent death. It prevents life. ~

Buddhist Teaching

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