Category: 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.

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