Category: Parkinson’s


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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I described the transient ischemic attack (TIA), arriving like a freight train and departing before dawn (see I Am Dying). Instinctively, I knew this was a warning shot, an enormous detonation. As a former medic, I knew of strokes. I now understand a lot about TIAs but knew nothing relatively several years ago. There are moments when I felt as though I am the only one taking it seriously. Getting medical professionals to understand a patient’s concern can be challenging. A Stroke Association survey concluded 16% of TIA victims didn’t feel taken seriously, and 25% reported that health professionals didn’t realize that they had had a TIA. If a TIA occurs, the patient is likely to be prescribed aspirin, receive a pat on the shoulder, and an escort out the door with a recommendation for a further clinical study. 

Unlike my father, I consider my events with mixed emotions as my cognitive skills and memory were not affected during the October episode. Still, research suggests more TIAs are in my future. Some patients realize they had suffered a TIA when reading medical notes with no clinician confirmation of the diagnosis. My experience was similar, as I read my tumor diagnosis via an online patient visit summary posted 21 months ago. Only when pressed did I confirm ‘prognosis was poor.’

TIAs are hard to diagnose. Symptoms vary. Facial weakness, drooping mouth, arm or leg weakness, speech difficulty, blurred vision, and dizziness can occur. Each TIA tends to be specific to the individual, and not all symptoms arise. Initially, my neurologist kind of dismissed my concern. Should the TIA occur again, ‘… we’ll review.’ However, out of caution (since I kept asking inquisitive questions), ‘we’ll schedule an echocardiogram.’

Upon arrival, the echocardiologist greeted, “You’re here today for an echocardiogram because your doctor diagnosed you experienced a TIA.” “Fantastic,” I quipped. Forty-six days later, it was the echocardiologist who stated the obvious, something I already knew but couldn’t receive confirmation. Undoubtedly someone will ask how I know when everyone else cannot. After completing the medical summary (discussed in the post Lists), my intrinsic gut feeling became clearer. My first TIA occurred in March 2019, with loss of vision, foggy sight. Although I improved throughout the following day, the impact lasted three days. My second TIA occurred in May 2019, with left side facial paralysis and mouth drooping. The effect lasted six days. During the third week in October 2020, my third TIA produced no coordinated functionality in arms or legs, no balance, could not stand, unable to lift myself, foggy. The impact was significant and lasted over six days. Should something in the heart be amiss, an echocardiogram will help detect cardiac sources of stroke or TIAs.

The echocardiologist performed a transthoracic echocardiography (TTE) using an ultrasound imaging technique that allows the heart structures to be seen. A hand-held wand placed on the chest provides pictures of the heart’s valves, chambers, and helps the clinician evaluate the heart’s pumping action. It was a ‘matter of fact’ test procedure. A ‘no biggie’ I’m told. ‘Good I thought. At least I didn’t hear, ‘I’m not used to this version of the software. Do you know what this message [Not Currently Recording] means?’ Results come in a week.

Wait another week? I envision doctors talking after my death, “He was in his usual state of humor — right up until his heart quit. Damn. That’s gotta suck.” But here I am. Two days post test, I am still alive. Still kicking. The Chinese Book of Changes (I Ching) states, ‘Waiting is not mere empty hoping. It has the inner certainty of reaching the goal.’ Goal? I have no plan. At this point in my life, if I had dreams, they were created by comedian George Carlin, “… get up, work eight hours, eat three meals, take one good shit and go back to bed.” The mind hates uncertainty, and living in a state of “not knowing” is intolerable.

To understand how inharmoniousness waiting is, I remember working in the emergency room one night listening to one friend comforting another. “You know, Mike; we give ourselves no credit for taking time to be present. The doctor’s said there’s just a few others ahead of you. How about if we pass the time thinking of things we can do in a week or two?” Horridly, Mike stares as if a flamethrower was pulverizing his friend, “F*** that s***.”

To counter such emotions, I become more aware of my feelings and come into the present moment, where everyday activities still take on a joyful, miraculous quality. If I am mindful or fully present in the here and now, anxiety disappears, and a sense of timelessness takes hold, allowing the best highest qualities, such as kindness and compassion, to emerge. And most of the time, it works. Other days, I want to say, “F*** that s***!”

I told my case worker I had several dreams of telling people I was dying. I am not sure if the prognosis of dying actually initiates such ‘death’ type of dreams or not. However, having worked in a hospital I have encountered terminal patients who shared that their dreams and visions felt realistic. Many related visions of past meaningful experiences and reunions with loved ones, and those who reassured and guided them. Others reported feeling as if they were preparing to go somewhere.  My dreams fell into the second category.

One dream seemed appeared like walking through a black fog. There was no light (maybe enough light to understand I was walking through fog), no pain, no hatred, no hell, no fire. Just a dark fog. I did not envision life was going to be destroyed. Nor did I fear death. I was sort of assessing the fog, the steps required to exit it, that I should follow this ‘intuitively’ known path. If I did, I would exit and move on to whatever was next. This intuitively known path offers much insight. All dreams offered a similar message: time is short.

I noted one particular dream of interest. I followed a child, who held a letter proclaiming life would end six weeks later. The child did not walk in fear but busied himself by looking for the room to report. When experiencing such dreams, many claim it is the internal soul processing all the events occurring. Others turn to Internet dream analysis and equate some deeper meaning. And many might roll over and slumber out some words, “That was weird,” drink some water, and go back to sleep for another round. I took all of it as a message.

Up front, there’s no indication that I am going to die within six weeks. There is also no indication I won’t die in six weeks either. If I did there was only six weeks, I have five left, for the dream of the child occurred last weekend. Since I am a walking timebomb (my non-medical techie word), that could check out (blow-up) at any moment, I must be prepared. I have to understand that my family needs to know my finances, where to get access, where can one store documentation, etc. Therefore, this week has been a non-stop action of lists. Even in death, life is a list.

There are lists for everything: pre-flight checklists, project checklists, camping lists, grocery lists, bucket lists, start of school lists, moving lists, packing lists, medication lists, household todo lists, babysitting lists, and so on. Preparing to die has a list. Once I started, my list grew exponentially as the  week evolved. I started with a simple Internet list of 7 things needed when you learn you’re terminally ill. Some things included a second opinion, treatment options, disease course, symptom management, bucket lists, hospice and how I would like to die. Here’s the additions:

  • Health Insurance coverage and details;
  • Printed Health Summary (list of your medical infirmities) ;
  • Last will and testament (Don’t have one? Get one.);
  • Work transition list;
  • List of contact numbers, including work, Human Resources, and supervisors;
  • Storage location for scanned files that can be accessed by my executor;
  • List of passwords for key accounts;
  • Last Letter (The Stanford Letter Project) to loved ones;
  • Last blog post;
  • Medical consent list, including a sub-list of Do Not Resuscitate (DNR), living will, no code treatment, spiritual counseling (last rites), plan of care, etc.;
  • Bill Payment list, including credit cards, utilities, bank account passwords, account key questions, special PINs, and copies of statements;
  • List of turn off auto-refills or auto subscriptions;
  • Car maintenance schedule list;
  • Veterans Benefit changes;
  • Change property title transfer to beneficiary (If you rent, lease information);
  • List of drafted letters to all credit bureaus;
  • Letters to credit card companies terminating accounts (to let them know you’re dead and that Platinum Amex card is not accepted in heaven);
  • List on securing Passports, ID Cards, Driver’s License and other ID materials;
  • Turbo Tax passwords and past five years of taxes;
  • Car Title transfer;
  • List of email accounts/services to cancel, Facebook, and other online services to cancel;
  • Social Security Administration Information;
  • List of E-Trade accounts and other relevant information, listing statements, ensure beneficiaries are properly stated and net worth (which either shows you’re beneficiaries will adore you or confirm you’re worth the paper the statement was printed on);
  • List of any 401K plans and beneficiary information;
  • Deferred compensation and beneficiary information;
  • List of local Hospice information and basic interviewing of hospice; and
  • List of cremation services;
  • List of items for storage, selling, or donation; and
  • Lists of people to inform I am terminal (nah)

I admit, as of today, I have 90% of the above list(s) complete. I feel terrific. The lists of life are not easy, but they must be checked off. Get prepared. Live your life like you’ll die tomorrow, but build a document repository that will help your benefactors. Then plan your life as though you’ll be here for another 50 years.

Did He See That?

Stuck in bed from excessive pain and excessive blood loss, l watched the world from a window. Laying horizontally, one views a different perspective of the world, its beauty, frailties, and trivialities. In the hours, and the hours after that, life’s opportunities are thrown to viewers to ponder, but only those who see.

I was taught God knows us. And, in an ideal world, not one shall fall ‘cept by His will. Christ said so. “Yet not one of them (sparrow) will fall to the ground without the will of your father.” Am I afforded the same? Does God willfully wish me to die painfully, either from a tumor or Parkinson’s like a multitude of others? If God sees sparrows fall, does He see all animals? How about cats?

A cat died today crossing the street. Naively darting into traffic to cross the street, its hind legs were trapped under a tire. In excruciating pain, it tried to maneuver back to safety, but could no longer function and finally succumbing to fate’s last breath. We were both unable to move: the cat and I, helpless, and unable to move. Hours later, the moment we both participated remain frozen. My only words, “Dear God!”

“Dear God? Did you will that? Was that YOUR will?” The driver who saw the cat drove on. Other vehicles passing by looked at the struggle and simply passed by. “Not my job,” one might say. “No time,” another may claim. In 2018, Five teenagers who taunted a drowning man while recording his death. Did God see it? George Floyd died with an officer kneeling on his neck. Was that God’s will? Jacob Blake was shot seven times in the back. As Blake was shot, did Christ believe the will of YOUR Father was completed? What the hell was He thinking?

When an Antioch, Illinois teenager shot protesters in Kenosha, WI, was HE good with that? If Trump refused to condemn the shooter (and the act), was that God’s will? When Trump plays golf while many painfully die from COVID, are we good with that?  If God does nothing, should we? If our leadership willfully throws children in cages on America’s southern border, is that the type of tough love God condones? If we remove the Affordable Care Act and thousands die, does Christ say, “Cool.” I come to ask these questions because I know of no better forum to bring such grief. As the Apostle Peter once said to Jesus, at a moment of confusion and doubt, “Lord, to whom else can we go?”

During my incapacitation, In Fakebook’s show Sorry For Your Loss, the lead character typed a deep heart penetrating comment. “Everyone says it’s not the end of the world. That’s because it’s not the end of THEIR world.” I truly believe our world no longer feels grief because we no longer experience connection.  I had no close ties to the cat, but in a searing single moment, part of us shared a body of pain. As the cat suffered, I suffered.

Many of us will succumb similarly to the cat. We come. We live. We get ill. We succumb. However, in order for us to get past the ideology of the day (whether Trump, QAnon, GOP, Democrat, whatever), we’ll need to feel scars, In the presence of Jesus’ scars, Jesus instructed Thomas to “Feel my hands” and “Touch my side.” In a flash of revelation, Thomas saw the wonder of a God who in some way, stooped to take on our pain. In that sense, I can attest that where there is misery, there is Love (God).

In moments of pain, I want answers. “(Looking at Trump’s antics) Like God, why?” Yet God appears to remain aloof. Or does He? Frederick Buechner said, “I am not the Almighty God, but if I were, maybe I would in mercy either heal the unutterable pain of the world or in mercy kick the world to pieces in its pain.” God did neither. He sent love (Christ). God joined our world in all its unutterable pain to set in motion a slower, less dramatic solution … one that involves us.

All that has happened in these past four years demonstrates that your life—the decisions you make, the kind of person you are—matters now. Neither the cat nor I have a future. I would like to promise an end to pain and grief, and that one will suffer again. I cannot. I can, however, stand behind the promise that all things are redeemable, and can work together to a greater good. It’s a lesson God, Kanako, and that cat taught.

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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