Month: October 2020

The Washington Post has a new feature: “What Day Is It?”

The Post said it is “to help you redefine and regain control of your week…March feels like yesterday, doesn’t it? It pains us, dear reader, to tell you that March was more than six months ago.”

I read those words while thinking about another related, time metaphor. Time had flatlined for me in 2020.

My usual calendar anchors had evaporated. Easter customarily marked the start of planning for our annual Thelen family gathering at New Smyrna Beach, FL. This year Beach Week didn’t happen. Covid-19 nixed it.

July 4^th this year didn’t foreshadow special Labor Day doings, which used to slide into planning for Thanksgiving and Christmas get togethers. Not this year. 

Leisure travel vanished. Covid-19 gave us quarantines, social distancing and masks. Our feet were nailed to the ground.

Living with Parkinson’s makes time uncertainty an even harder problem than it is  for “civilians.“ We Parkies need hand holes to anchor our lives. 

We fight to retain memories and mental habits (handholds) that Parkinson’s is determined to erase. Flattened time only adds stress, which is Ol’ Doc Parkinson’s sidekick.

The old normal of our lives is gone. The new challenge is finding behavioral norms and purpose that keep us engaged in service to others. “Making God’s Love Real, “ as my Methodist church of old put it.

Instead of feeling acted upon, I need to drive action in a vital cause, one within my reach. That cause is the wellbeing of my fellow Parkinson’s disease sufferers.

I’ve developed a swallowing problem over the past year. It’s a big deal.

I trace some of my 40-pound weight loss to diminished appetite tied to how slowly I now eat. Increased drooling has not been fun either.

Worst case, swallowing disability can result in aspiration pneumonia, one of the two leading causes of death for Parkinson’s sufferers. (The other is falls secondary to balance and equilibrium deficits.)

I have added an ace speech therapist to my health care team. Her grocery list of mouth exercises has significantly improved my symptoms

Dr. Michael Okun has a blog post this week that explores in exquisite detail the spectrum of swallowing problems.

Find it at http://parkinsonsecrets.com/blog/2020/9/26/7qedam0quxrto7qrafbg4i2d70g51x

Back at the turn of the century, I was a small-bore “King” of media convergence.  Or maybe I was only a Duke. (Go Blue Devils!)

Our big convergence deal in Tampa was building the News Center in 2000. It housed WFLA-TV, TBO.com and TheTampa Tribune newsroom. 

Journalists migrated to our “Mecca” to observe how once-cutthroat competitors “made nice.”  Reporters delivered news on the “first available platform,” no matter the medium that signed their paycheck.  Radical idea then. Common practice today.

I retired as President and Publisher of the Tribune in 2006. A new convergence model was sprouting then. Its name: podcasting.

I entered the academic religious order for the next decade, never engaging and using this new media platform. I was unaware of the reach and power of podcasting. ( A podcast is an episodic series of spoken word and digital files that a user downloads to a personal device for later listening.)

Larry Gifford, co-founder of PD Avengers, introduced me to the podcast experience last month. PD Avengers is a global alliance of people with Parkinson’s standing together to demand change in how the condition is seen and treated. I am an Avenger in training. (See http://www.PDAvengers.com)

Larry is national director of Talk Radio for Corus Entertainment in Canada. He hosts the podcast “When Life Gives You Parkinson’s.”

After a Zoom meeting where I mentioned the topic, he invited me to discuss “When You Know It’s Time To Fire Your Neurologist.” I’ve done so twice.

It was a terrific experience.  “I see now that they are very effective, new journalism form,” I wrote Larry about podcasts. “In essence you and Rebecca (his wife and co-host) created a warm and harmonious space where a number of voices were connected into a very well told story.”

In researching this post, I encountered Andrea Bernstein, an accomplished and versatile investigative reporter.

“I adore audio,” she said. “The pauses, the breaths, the catches, the little inflections that can say so much more than hundreds of words on a page. Finding a perfect piece of tape is like summiting a mountain, the whole world just opens up before you.”

“When You Know It’s Time To Fire Your Neurologist.”

You can listen and download from here: https://t.co/HDIHuT0u2m

Will I never get it?
Suddenly my Parkinson’s symptoms spike through the roof. I get pain in weird places. My meds wear off super fast.
I wander around in a fog.  I can’t mentally connect to changed circumstances. 
Have I suddenly had a falling-off the-cliff moment with my PD progression?  What did I do wrong?
DUH!
It’s the news thing again. It’s Trump madness, this time his Covid-19 diagnosis and hospitalization.

Stress am I, which is Ol’ Doc Parkinson’s helpmate in bringing out my worst PD symptoms.How can I forget my recent blog on the connection, ‘The Clarifying Power of What Next.” (Sept. 14)

I care deeply about what’s happening to my country. It’s tearing itself apart. The 2020 presidential campaign is a scene from “One Flew Over The Cuckoo’s Nest.”

I have to bloody remember that stress fries my autonomic nervous system.  I need to go to my “Happy Place” where a Perdomo 20th Anniversary awaits lighting and a glass of Merlot is being poured.