Parkinson’s Scrambles My Thinking Life
Nothing prepared me for the Parkinson’s experience “inside” me, the under-the-skin disruptions.
I prided myself, before PD, on my self-awareness. I understood my stream of consciousness and my sometimes-turbulent emotions. Or so I thought.
My Parkinson’s is predominantly the non-motor kind, centering on the autonomic nervous system. That means most of my bodily functions are affected at one time or another. Dr. David Riley talked about those in Chapter 4:
“Major responsibilities of the autonomic nervous system areregulation of blood pressure and heart rate, bladder and sexual function, digestive and bowel function, and control of perspiration and body temperature. PD potentially disrupts all those.
“The most common symptom of autonomic impairment is constipation. The two autonomic problems causing the most disability are inability to maintain blood pressure, resulting in lightheadedness and fainting, and loss of bladder control.
“Sleep disorders in PD include insomnia, excessive daytime sleepiness, and a tendency to act out dreams — known as REM-sleep behavior disorder.”
Awareness of inner fluctuations matters. The fluctuations often signal needed medication adjustments.
Too frequent peeing? Take a salt pill for water retention. Hot or cold flashes? Adjust my Sinemet dosage or timing intervals.
Constipation? Take an additional laxative capsule. Sleep interruptions? Increase my Trazidone dosage before bed.
Stiffness and pain in my back? Get my physical trainer to provide remedial exercise.
Heightened consciousness of inner doings led me to a closer examination of my psychological needs and behaviors.
The 800-pound gorilla was my marriage.
I met my future wife Cynthia Jane Struby atTheCharlotte Observer, where we were both sub-editors in the late 1970s.
She went by the handle Struby, not Cynthia. “I don’t see myself as a Cynthia,” she has often said.
She is tall (just shy of 5’10”), statuesque, composed, smartly dressed, personable, attentive, detailed, athletic and quite smart. The room pays attention when she enters.
Struby was a journalist from birth. Her late father, Bert Struby, was the longtime president and publisher of The Macon Telegraphin Central Georgia.
She grew to share many of his strongest traits. He was cautious, precise, quantitative, explicit, principled, devout, rule-driven, predictable, steady and inward. What you saw was what you got.
First-child daughter started newspapering after graduation from Furman, a demanding university in South Carolina. By age 24 she had meteorically risen to managing editor of a small daily in Virginia.
It wasn’t hard to fall for Struby, for all the right reasons.
We were bookends.
Me: driven, extroverted (in public settings), passionate to a fault, big-picture guy, conceptual. Myers-Brigg personality type E/INTJ.
(After PD, I added rule breaker — on occasion and when the rule is stupid. My bumper sticker reads ”Obedience School Dropout.”)
Struby: Deeply introverted (while seemingly not), detailed, quantitative, cautious, future focused, rule maker and rule follower. (If there were such a bumper sticker, hers would be “Obedience School Honor Graduate.”) Her Myers-Brigg type is ISFJ.
The onset of Parkinson’s dealt our marriage a staggering blow.
Over time — we later realized with outside help — we were meeting too many personal needs through others, not one another.
Struby drew support from her wide network of friends: tennis, PTA, social organizations, neighborhood, Scouts, school, professional, lacrosse parents.
I drew support through my profession, Rotary International, church, golf –and cigar buddies (See Appendix xxxx for the story of Tampa Humidorcamaraderie.)
PD ripped off our marital Band-Aids. Struby correctly refers to those as heavy-duty, duct-tape patches.
For our marriage to survive, we had to dig deep to establish new connections and partnerships with one another
A no-nonsense therapist pointed the way. I treasure Mindy for her uncanny insights and pivotal guidance.
My therapeutic breakthrough came when I related my childhood to my subsequent life with women.
I love the company of women. But I harbor mistrust, always.
My mother, Violet Okonn Thelen, was a promoter of her self-importance. Always center stage. Always demanding attention and adulation. How many times she would recount triumphs such as:
High school girl friend of Johhny “Tarzan” Weismuller. Check.
Pioneering female realtor in Milwaukee. Check.
Owner (and grand hostess) of a successful gift shop in Richmond, VA. Check.
My brother Neil and I were her stagehands.
Our role was to win academic and sports honors that she would display on her massive charm bracelet. (All-conference football and track. Phi Beta Kappa and Omicron Delta Kappa keys, to name jut a few.)
Vi had a devastating way of controlling her eager to please and emotionally needy sons. Displease her and she would ice us emotionally, withdrawing her affection.
That experience carried forward.
I am always on guard about women pulling the emotional rug from under me.
I have never been able to trust fully any woman, including those I loved and love. (That’s you, Struby Thelen.)
A second impediment in our marriage was my adjustment to Parkinson’s unpredictability and randomness. I could not count on anything about tomorrow, including being alive to see it.
Today is all I have. Past and future matter much less than they did pre-PD.
My stream of consciousness is “in the now.” I live as if today were my last on earth.
The oddity of PD symptoms draws me closer to fellow Parkies. They don’t need elaborate explanation of our shared disabilities, the kind where there is no real answer to the question “why.”
Talk is easy among Parkies. Personal ties are quite “tribal,” using Davis Phinney’s lovely phrase for the Parkie People in his orbit.
I increasingly had cut my wife out of my deepest engagement with Parkinson’s. I thought she didn’t get the randomness, the ambiguity, the non-linearity.
Struby wanted “why” answers where there were none.
Our differing needs put us on a crash course.
Struby demanded precise detail of my every thought and move. Or so I felt.
I believed she wanted to control whatever freedom was left to me after PD had taken its gigantic bite.
I remembered Tom Graboys’ wonderful line about how the Beast relentlessly diminishes our powers and saps our personal control.
Three contenders pulled at my sense of control: my malady, my mate and me. I was deeply torn.
Struby and I needed common ground, more meeting in the middle of our differing personal needs.
For me that meant supplying the detailed information Struby needed about my thoughts and actions. It was her psychic oxygen.
I would share my daily encounters more completely and with precise details.
Struby hates “messes” in her environment. I would redouble efforts to avoid cluttering our household.
Bradykinesia is a Biggie for us, especially with its ugly twin, Bradyphrenia. Bradykinesia is slowed movement. Bradyphrenia is slowed thought processes and responses.
I am not any more stupid with PD, just slower in knitting my thoughts together in concrete words and coherent sentences.
Bradyphrenia includes impatience with details and diminished executive function capacity, such as multi-tasking and juggling. I have to do things one-step at a time and keep them simple (KISS principle).
Read on in the next two chapters to learn Struby’s take on managing the peculiarities of a Parkie husband. Me.
Lessons Learned: Parkinson’s is an inner journey of new awareness, much of it positive. It is disastrous to cut your life partner out of details about that journey. Communicate. Communicate. Communicate. Bradyphrenia can be a bigger challenge than Bradykinesia.