Month: May 2018

Parkinson’s wants control of us.

That’s a great lesson I first encountered reading Thomas Graboys’ magnificent autobiography of his inner life with Parkinson’s and Lewy Body Dementia,  “Life in the Balance.”

Bowels, bladder, equilibrium, balance,sleep,mood, memory, energy, intimacy.

Parkinson’s demands control of all we are and value.

Not just the Parkinson’s person is in this struggle. So are loved ones in countless ways.

The care partner might ask:

How do I engage this person who is different than before?

What about heir new mobility limitations? Their inwardness or outwardness? Their emotional disengagement? Their discomfort with showing their symptoms in public?

Their masked face? Their difficulty finding words to describe what’s happening to them? Their frustration with new limitations?

Their slowness? Their indecision? Their memory lapses? Their mood swings.? Their unpredictability in multiple ways.?

The Parkinson’s person is similarly conflicted:

How do I describe the life taken from me?

How do I adjust to a condition weakening my well-being?

How do I find common ground with my intimates who want the old me back?

What’s the new contract with them and can I meet it?

How do I live with daily changes in my condition–good days/bad days? What about on/off times with my meds?

Fighting for control, everyday and always.

Our greatest challenge.

 

Scene: Late Saturday AM at the Macon home of me — the Shuffling Editor (license plate SHFL ED) — and spouse Struby, The Great Copy Editor.

Shuffle and Great are finishing a two-hour conversation with three Parkie couples about the struggle for control of your lifeamidst Parkinson’s many curve balls.

The front door bursts open.

It’s Chuck and Shirley. “Are we late for the Pot Luck lunch?” Chuck asks, waving two bags of fried chicken.

Great and Shuffle are stunned.

Chuck and Shirley are members of the earlier PD Study/Action Group.

Well, no, they are not late for the Potluck scheduled for the followingSaturday.

“I was certain it was today,“ Chuck says.

Shirley rolls her eyes.

It’s a Parkinson’s thing, this mental confusion about dates and times.

(Another member of the first Study/Action Group appeared a day late for a breakfast meeting of Shuffle’s unrelated First Amendment Tribe (FAT) group.)

 

Twelve pieces of chicken and two beers later for the four of us, Chuck says they will return the following Saturday for the potluck

Just another day with Parkinson’s, the Great Disrupter.

Too funny!

An unusual type of colitis struck me in 2006. It mysteriously disappeared in 2014, the year I was diagnosed with Parkinson’s disease.

What was the connection between my Lymphocytic Colitis and PD? My physicians were mystified.

Recent research is identifying the gastrointestinal tract, as a probable starting place for PD. It’s quite an unfolding story.

Players include benign bacteria, inflammatory reaction, misfolded protein, and travel of a prion-like element from the gut to the brain along the vagus nerve.

This quite readable Scientific American article tells it well:

https://www.scientificamerican.com/article/does-parkinsons-begin-in-the-gut/

 

Perseverance centers a life of meaning. People with Parkinson’s know that well.

What follows is perseverance in a different realm, a gifted young athlete’s hard-fought journey to the top of his sport, lacrosse. The athlete is our youngest son, Jonathan (“JT”) Thelen, #8.

It rained sporadically Saturday night at Mustang Stadium, home of the Stevenson University lacrosse program. The place: Owings Mills, MD, a northwest exurb of Baltimore.

JT likes rain with his lacrosse, the more and the better. He’s been that way since he started playing at age 10.

It’s Stevenson against Widener (Chester, PA) for the MAC Commonwealth Championship. Winner receives an automatic bid to the NCAA D-III championship playoffs.

Also at stake is #8 JT– MAC  Offensive Player of the Year—rematched against Widener’s #41, John Ferguson– MAC DefensivePlayer of the Year.

This game is for revenge — Stevenson’s for the physical pummeling it took from Widener a week earlier. Stevenson overcame a four-goal deficit to edge Widener, 11-10 in the final regular season game for each.

Widener is by reputation aggressive, very aggressive. They were in the week-earlier game. The refs stood by as Widener’s defense repeatedly pole-axed Stevenson attackers, hitting them in the helmet and driving them to the turf.

Nonetheless,  JT had 4 goals, 1 assist.

This night, Stevenson’s blew Widener’s doors off. At half, Stevenson 6, Widener 0.

JT, #8, had 3 goals after 30 minutes. The game ended 12-6 with #8 accounting for 5 goals and 1assist.

The outplayed Widener #41 ended his game ignominiously. He was ejected for unsportsman-like conduct in the final period.

JT finished with 95 points for the season to date, a conference high and  second most ever by a player in the storied Stevenson lacrosse program.

JT is gifted at lacrosse. Academics come hard.

He struggles with ADHD.

He has worked very hard at lacrosse to become the player he is today: commanding on field; graceful and spontaneously creative; uncanny in his full field of vision; a great passer who assists teammates make goals.

Stevenson coach Paul Cantabene refers to JT “doing his thing,” sometimes with a note of criticism for his risk-taking style of play.

JT’s “thing” has propelled Stevenson to a 12-6 record, after starting 0-5 against a killer’s row of opponents and season loss of  two-thirds of the first defensive line.

Jonathan (JT) Thelen preservers with a huge heart and complete commitment to his teammates.

His mother and I could not be any prouder of his achievements than we are today.