Chapter 5: The Stress Villain
“God has abandoned me,” I said.
“Never,” The Rev. Jim Harnish answered. “Not you. Not anyone. Never.”
Two years later, I had a conversation that oddly connected to the one with Jim.
“Please, nurse, help me fill out this form,” I said. “I cannot do it myself. I can no longer write legibly.”
Stress connects the two conversations . Stress big and small. Existential stress and mundane stress. God and handwriting.
Stress is this Parkie’s supreme challenge. It brings on or amplifies other symptoms. It accelerates PD’s relentless march to diminish my powers and my sense of control.
Nothing in my life is natural and easy any longer: Not walking, talking, eating, peeing, defecating, bathing, dressing, sleeping, driving, planning, remembering, making love, making do.
Parkinson’s blows demand retaliation: ankle-biting insurrections. I call them my workarounds – ploys that take back some lost ground.
What were my major stresses, outside the obvious ones of having PD?
My daily energy was less. So why was I still investing in people and activities that were peripheral to the needs of my new life? I was hanging on to responsibilities from my pre-Parkinson life.
I have an emotionally demanding loved one who has barraged me with countless and endless phone calls for decades. I did not cut the calls off.
Now, there’s a boundary about when and how long I will talk. When the time I allot is up, I end the call.
I also decided to stop wasting time with people who do not challenge, nourish or really matter to me.
Hear the words of Mario de Andrade from “The Valuable Time of Maturity.”(13) He is a Brazilian poet, novelist, musicologist, art historian and photographer.
I want to live close to humane, very humane people, who laugh at their own stumbles … close to those who do not run away from their responsibilities, who defend human dignity and who only want to walk on the side of truth and honesty…
The essential is what makes life worthwhile. I want to surround myself with people who know how to touch the hearts of people; people whom the hard knocks of life taught to grow with softness in their soul.
I am in a hurry … to live with the intensity that only maturity can bring.
My goal is to arrive at the end satisfied and in peace with my loved ones and my conscience.
It was time to cut away myclutter and focus my agenda.
I chose two commitments: advocacy for Parkinson’s patients and advocacy for the betterment of my community.
I take very seriously my church’s activist directive of “Making God’s Love Real.” I enlisted in the effort to start a downtown out-reach ministry, The Portico.
My current Hyde Park Methodist senior minister, Magrey deVega, describes The Portico this way: “It takes the DNA of this church and expresses it in a worship style that is participatory, spontaneous and organic, with weekly communion and quiet moments of meditation. It places Hyde Park on the front porch of spiritually seeking individuals who are looking for a community to converse, connect and help change the (larger) community.”
I extended my Rotary pledge of “Service Above Self” by starting a Meals On Wheels route for the club.
I competed to make Tampa a test site for the powerful PD SELF patient empowerment program. We won. (I write much more about PD SELF in Chapter 8).
I promised to share my Ankle Biter retaliations for Parkinson’s nasty punches. I list the infirmities, then my counter jabs called workarounds.
Memory: I haveultra-short-term memory problems. Where are the keys? Cell phone? Cigar lighter? Remembering my plan for the day still works.
Workarounds:Everything has its designated bag. Keys, wallet, reading glasses, pill case, business cards in my small, leather “Boy Bag.” Boy Bag goes inside my leather shoulder bag/purse – my “Man Bag,” which also contains cigar accessories, business cards, small electronics. Man Bag goes inside my backpack. Backpack contains other bags for electronics, headphones and cigar accessories.
I seed the house with duplicates of needed items easily misplaced: reading glasses, styluses for computer screens, pens and pencils. Consider the clutter necessary, please Dear Wife.
Clothes: I have gained 30 pounds and pee constantly.
Workarounds:Buy waist expanders for too-small pants. Buy new pants with elastic waistbands for quick exits. Wear exercise pants for same reason.
For car trips consider pants two sizes too large and adult diapers. Pride is a luxury with PD. To avoid morning choke-up on what to wear, set clothes out the day before — when your head is clear and dopamine is “on.”
Get a 36” shoehorn. Takes the muscle strain out of putting on shoes.
Loss of feeling in fingers: Mine is 95% gone in my once-dominant right hand; 80% gone in the left.
Workarounds: I am training my left hand to be dominant – eating utensils, cup holding, stylus use. (Neuroplasticity, neuroregeneration at work.)
Use only cups and glasses with handles to avoid “dropsies.” Eat shamelessly with a spoon where a fork used to serve.
Emotional volatility: “Emotional incontinence,” in a Parkie friend’s unforgettable rendering.
Workaround: Think twice (maybe 10 times), before acting on impulse (binge shopping, gambling, etc.). One of my former agonists gave me a wandering eye, to my wife’s chagrin. That agonist is very much gone.
Multi-tasking kaput: I can no longer perform multiple tasks at once.
Workaround:KISS principle always. (Keep it simple, stupid) Rely on care partner for help.
Bradykinesia:Life in the slow lane. Slow walking. Slow talking. Slow thinking.
Workaround: Add 30 minutes (or more) to the time of a planned task (packing for trip, gym date, doctor visit).
Balance: Tipsy walking.
Workaround: Forget a cane or walker; use walking sticks for balance. Sexy and pleasantly eye-catching (“Cross country skiing in Florida! How neat.”)
Around the house: Add or get rid of things around the house that can trip you up or send you down.
Workarounds: Install grab bars in the shower. Put in comfort-height toilets or booster seats. Ditch scatter rugs that constantly get tripped over.
Car: Leaving stuff in and around car.
Workaround: Rigid discipline to ALWAYS check roof, door locks, rear hatch and ground around vehicle. Open the garage door FIRST.
Driving uncertainty: The BIG issue for many.
Workarounds: If feasible, get a technology-loaded car (GPS, blind spot displays, radar and cameras everywhere); stick to middle lane; U-turns rather than left turns into four-lane roads; care partner drives in unfamiliar areas. Increase normal number of side-to-side and straight ahead eye sweeps to gain more information. Use computer program to increase peripheral vision. Take driving test offered by AAA/AARP. If a physician qualifies you, get a handicapped parking mirror-hanger or license plate. It gives you additional door-opening space and room to park straight, rather than Parkie-crooked.
Recall that Dr. David Riley (Chapter 4) listed visuospatial deficits as a higher order mental function problem in PD. Those deficits link to driving problems like lane drifting, driving too close to other cars, hitting curbs and crooked parking. Visuospatial disruption is why I almost ran off the road after the PD Lightning strike in the Carolinas.
They also explain why I often bump into furniture and aim wrong in reaching to pick up objects, such as wine glasses. Bad aim can put, aargh, red wine on the floor.
Stress is PD’s ally. Reduce it to live better. Use counter punches to regain lost ground from PD’s ravages.