Tag Archive: Parkinson’s


Watching Chris Cuomo last night work through his Coronavirus diagnosis and displaying his chest x-ray was amazing. In some ways, Cuomo became a folk hero of sorts, battling adversity to keep the public informed and outlining his self-quarantine modeling. However well-intentioned he was, Cuomo’s bravado perpetuates an ongoing problem: to stay employed, you must work through illness.

My company issued an internal employee policy that provides an additional amount of time off for COVID-19 recovery. All that’s required is the willingness to ‘self-disclose.’ They created a self-disclosure button in the HR portal. It’s easy. Click that ‘self-reporting’ button, enter the information, and submit. 

In my world, any 60-year-old would likely not choose to self-report. For those in my age bracket, self-reporting It’s just another opportunity to eviscerate yourself to the sidelines, an exit to unemployment.

My Parkinson’s was diagnosed 45 days ago. Feels like a 1,000. I spent the first two weeks in a fog-just reading anything possible about Parkinson’s. Not usually a movie star biography reader, I read every word of Michael J. Fox’s autobiography in two days. However, outside of my doctor and case manager, I haven’t told a soul.

I experienced two weeks of reflection, then Coronavirus exploded. It feels 9,000 miles an hour since. Good or bad, there’s been no time to think about Parkinson’s. Neither have I thought of my normal daily position, the pain of dealing with loss, nor coping with demanding people who filter in and out of everyday life. What living with Parkinson’s has allowed me to d is notice something important. Just like pre-COVID, some days are good, some days are bad. Some days, the tremors were noticeable. Other days, it wasn’t. For four days, no Parkinson’s symptoms. Today? Bam. Back with a vengeance. No matter what I did, tremors rumbled. 

Like Tom Hanks’ character in Cast Away talking to Wilson (a volleyball), I sometimes find myself talking to Parkinson’s as if it were real.

God damn it. Not today. I have too much shit going on to deal with you.”

I am unfamiliar with this new world. I am lost. So, I read of a blogger who suggested I find celebrities living with Parkinson’s. My first search found Michael J. Fox, Muhammad Ali, Janet Reno, Charles Schulz, Linda Ronstadt, Johnny Isakson, and Billy Graham. Not that their stories aren’t compelling, it’s just that only three remain alive.

Another interesting thought about post-Parkinson’s diagnosis is cadence. The rhythm of 5 AM, 1 PM, and 9 PM Carbidopa/Levodopa ensures interrupted sleep. And even then, I sometimes wake at 2:00 AM, stiff. Afterwhich, I stumble to the recliner with the best intention of meditating, only to promptly fall asleep. I often wake exhausted.

Unlike Chris Cuomo, I will not publicly announce either Parkinson’s or COVID. I will never click that ‘self-report’ button. Sure, it’s probably the right thing to do, for both coworkers and me. But if I were working from home (being a member of the 55+ club), I’d likely mark my door with blood, keep working remote, and hope for a passover by the God of COVID.

The impulse to work through an illness is crushing, especially now, when workers with truly essential jobs face pressure to do likewise. In my career, I’ve never received a message saying, ‘You’re so important, we have to make sure you take care of yourself and your loved ones.’ Not once. Rather, my career was filled the mantra that devotion to retaining a job, meant personal sacrifice, for the workplace was the ultimate value.

As Joanna Wiess noted, “The impulse to prove an uncommon work ethic isn’t limited to pandemics. It’s on display when Elon Musk brags about working 120 hours a week, or when a high-powered female executive goes back to work within days or weeks of delivering a baby.

I don’t like it. But’s that’s where America is. 

It’s not some mythical inner spirit that helps me overcome an encroaching disease. It’s neither a Buddhist nor Christian philosophy. There’s not even a personal mission to the greater glory. For me, it’s the ‘stupid philosophy’ that allows me to retain employment. With over 10 million unemployment claims over the past several weeks, that’s important.

I don’t like it. I don’t want to have to work through the pain, but that’s where many of us are.

Because It’s Wednesday

Understanding ‘down days’ has been easy. I ignored them. For the past five or six years, I never understood why I felt great one day while stuck in second the next. Since doctors readily dismissed my symptoms, the only avenue left was ‘out of sight, out of mind.’

Yeah. I get it. The approach wasn’t the best plausible approach, but it was the most effective.

How do you feel today?”
I am feeling slower,” I’d respond.
Any idea why?
Hell, I don’t know. It’s Wednesday.

I’ve written about this before: For close to a decade, pain has been a companion. Legs were stiff as far back as 2010; neck stiffness graced my presence in 2014; neck and shoulder pain announced itself in 2016; and arm spasticity followed in 2019, with on and off twinges of the foot, hand and finger issues. During such times, mental fortitude and daily, a multi-daily dose of pain medications were downed like M&M peanuts in a snack bowl.

As the years drifted by, and while doctors could detect the problem, fortitude and drugs allowed to forget. With them, I was equal. No one knew.

A year ago, I was informed that only two good years remained. “Prognosis is poor,” the report stated. Post-surgery, I thought the surgeon might have bought additional time. Last Friday’s Parkinson’s diagnosis was a shot across the bow, a reminder to accept the frailty, the beauty, and the levity of life.

The tumor was my blessing. Maybe via that and Parkinson’s, I can relearn the opportunities of profound growth and how to access gifts untapped. Maybe in the next year, I get more family photographs, visit Zion and Bryce Canyon, and walk along the Snake River Canyon.

I know there will be some dark days, some scary twists and turns. And I will find comfort in the kindness of others. They will be my angels along the highway – never forgotten. God and Ms. K. will provide strength and support from which I always drew.
Lastly, there’s my internal staff: Fortitude. Always had it, always will.

In whatever you do, I wish everyone health and an appreciation for all that life offers.

If that doesn’t work, blame it on Wednesday.

Silence

Parkinson’s. … Parkinson’s. Another crossroad of life – my life. Four days post-Parkinson’s, I remain quiet. Not a word. Not a soul. And unlike my tumor, to which I told only a selected few, nothing.
Like my tumor, I don’t want Parkinson’s to by my identity. I know it will (eventually), but not now. Not yet. I can’t handle this being the forefront of life. Just can’t.
I don’t want to be dependent. In Tuesdays with Morrie, author Mitch Albom noted the loss of control that leads people to rely upon others unconditionally. For me, Parkinson’s represents a loss of self. Maybe it’s the fact someone gets to wipe your a••. Not sure if that’s good or bad.

Albom’s work was about his conversations with a former professor, Morris “Morrie” S. Schwartz. One night, Schwartz was talking 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.”

In my way, Parkinson’s scares me more than my tumor. Depending upon the story, Parkinson’s is slow. And while cancer can be as well, the thought of losing my mind, my thoughts, my most inner secret is worrisome.

The good news is that I know I will die. I have too much negativity in this old body to make it too much farther down the road—arthritis, Cervical Stenosis, a tumor, and now Parkinson’s. But dying is more than negativity; it’s about the positivity that I understand my death, and that to live better despite it.

A significant part of me is not to whither against the hard rain darting past my hat. I aim not to disappear. The key for me is the daily query of one repetitive question, “How do I make the best of it?” I believe in the life hereafter. I believe Ms. K., will meet me. I believe in a spiritual force. I believe in God. I believe in love.

And that’s where I want to live. And that’s why I will probably say zilch until I absolutely must. I prefer to live in the center of those items just listed then in Parkinson’s. I should have done that all along.

Lies We Believe

The two days post-Parkinson’s diagnosis was spent reflecting. Admittedly, I accomplished little. Yeah, 2019 taxes remain partially complete, but there’s laundry, mail, and several medical bills. Prima facially, I accomplished little, but inwardly, I accomplished much. 

Much like my tumor, I’ve told no one of my Parkinson’s diagnosis. If revealed, one would probably curse my doctors, tell me to sue or at least write a well-thought nasty letter. Sure, I could spit in my original neuro’s face. Yeah. That doctor who blatantly told me in April 2015 told me to see a psychiatrist. I could have done that. I didn’t.

I could have attempted an angle. As a former rescueman who risked his, I effectively calculated all aspects. I was known for quickly summarizing the best outcome, and often, beat back the face of death. Doing such was a lie I told myself and others.

Such lies bring comfort. If you’re dying, you want comfort God will dispatch angels to comfort and carry you. A young mother wants to believe doctors will heal their child or husband. If you lost your medical insurance, you’ll gladly listen to and swallow a politicians’ lure’ of free health care.

I could blame my neuro for all my ills. I could. I won’t. Why? Because I was the lie, I told myself. I’ve known for years my back was stiff, stiff leg muscles and pain, a left stiff arm, bad dreams, the nights I couldn’t sleep, and the ever so slight internal and left-hand tremor. I dropped more coffee cups and glasses than I could count. I just lied.

You need to see a neurologist,” She urged.

Ah, I don’t want to waste anyone’s time. They’ll tell me nothing’s wrong.”

I don’t know,” she frowned. “There’s something about your symptoms that don’t make sense.

I relied on my ability to elude danger. Like forty years prior, Celecoxib, Gabapentine, Tizanidine, Tylenol 1, and Tylenol 3 were my lies. Arthritis drugs killed the pain but didn’t treat the disease. The tumor forced me to address the pain. 

I didn’t have much choice. The surgeon who removed my tumor stated I required a neuro eval. And coming full-circle, I returned to the very clinic that ignored me years prior. In less than an hour, I went from viewing doctors’ confusion to hear, “We believe you have Parkinson’s.;” to hearing, “You have Parkinson’s;” to “I’m sorry.”

William Shakespeare said, “All the world’s a stage, and all the men and women merely players: they have their exits and their entrances; and one man in his time plays many parts, his acts being seven ages.What Shakespeare is referencing is the drama everyone lives throughout their lives. He reduces life to performance or acting. To which, oftentimes looks ridiculous.

Is there some connection between truthfulness and personal integrity? Possibly. Spiritual men and women often had a disdain for lies. In fact, “not lying” one of the fundamental training practices of his path of self-transformation. “Not lying” might raise some ethical issues. For instance, what if a Nazi guard asked if Anne Frank was in our attic? Would I have lied? Of course.

The practice of deceiving with myself of true inner healing via false medication was like a sailboat anchored to the shore. I had a role in my own lie. I lived to the act, and my decision making was ridiculous. All of us need to focus on good days – living as many good ones as possible. Tomorrow, I promise to have a good day. 

Promise me you’ll live only good days.

 

“It is in the nature of medicine that you are gonna screw up. You are gonna kill someone. If you can’t handle that reality, pick another profession. Or finish medical school and teach.”

~ Gregory House ~

Dr. House’s comment while substituting as a guest lecturer. Unfortunately, Dr. House’s statement to the interns occurs all too often. It happened to me this past Friday. I likened it to something out of Charles Dickinson’s Tale of Two Cities.

“It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair . . .”

I returned for my post-operation evaluation. Good News. The operation was successful. Bad News. The symptoms remained relatively the same. My neuro was positive that removing the tumor would make some positive impact.

Studying the medical history, a sharp, bright, neurological nurse looked at my medical history, then she squinted and studied further. Her first poke went unacknowledged. With careful forethought, she grabbed a piece of the neuro’s flesh, twisted slightly. Turning to look where she pointed, the neuro read. He read again. And again. He pulled up the MRI from 2015. And he read. Read again. And again.

They excused themselves.

Ten minutes later, several doctors, en mass, poked and prodded. They left, leaving the neurological nurse and me to kill time quietly. After eons of seconds, she sympathetically smiled me. “We believe you have Parkinson’s.”

Pause . . . Long pause. 

I must have had this WTF expression, but just as she was about to follow-up, the flock of physicians returned.

“In 2015, the MRI we performed indicated over seven supratentorial FLAIR hyperintense lesions or plaques. We should have noted these. We misread the MRI. While there is no one single test that can verify Parkinson’s, this finding and your symptoms demonstrate the diagnosis. Unfortunately, your Parkinson’s has been untreated for at least five years.”

“All this time I was told, ‘nothing to be done,’ we recommend a psychiatrist…”

“Was awful,” he interrupted. Soulfully searching for the right words, “I am sorry.”

The tumor still had to come out. The remaining portion of the tumor still residing in my neck still remains. All the while, physicians had either denied my symptoms or attributed to the tumor was wrong. All those years of pain and suffering. All it took was for a twenty-year veteran neurological nurse to read the chart and connect the dots. 

I am still processing, but I left in peace. “Why?” one would wonder. Well, I found some level of peace in the doctor’s words.

“Better than a thousand hollow words is one word that brings peace.”

~ Buddha ~

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