Living with Parkinson’s for 20 Years: A Retired Teacher’s Diary of Defiance

Living with Parkinson’s for 20 Years: A Retired Teacher’s Diary of Defiance

At 68, I taught my last high school history class. At 70, I was diagnosed with Parkinson’s disease. Now, at 90, I still tend my rose garden, play chess with my grandchildren, and write daily in my journal—shaky handwriting and all. Parkinson’s has been my uninvited companion for two decades, but it hasn’t stopped me from finding joy, purpose, and even humor in this journey. If you’re newly diagnosed or feeling defeated, let me share the hard-earned lessons that keep me thriving.

1. Movement Is Medicine – But Make It Fun

Parkinson’s stiffens muscles and slows steps, but surrendering to stillness accelerates decline. The key? Turn exercise into play.

My Routine:

  • Morning Dance Party: I blast 1950s rock ’n’ roll (Elvis gets me moving!) and sway for 15 minutes. It eases rigidity better than pills.

  • Garden Tai Chi: Slow-motion watering and weeding double as balance practice.

  • Grandkid Games: Hide-and-seek (they “find” me quickly), balloon volleyball, and sidewalk chalk art.

Science Backs This: Studies show rhythmic activities like dancing improve gait and reduce freezing episodes.

Pro Tip: Use a metronome app ([MedTimer]) to retrain your brain’s timing during walks.

Amazon Must-Have: [Sturdy Walking Cane with LED Light] – Helps navigation and lights up night paths.

2. Outsmart Tremors with Adaptive Tools

Tremors made me drop teacups and miss buttons—until I hacked daily tasks.

My Life-Savers:

  • Weighted Utensils: Steady my hands during meals. [Kraftware Adaptive Silverware] works best.

  • Voice Assistant: Alexa reminds me to take meds and reads my audiobooks aloud.

  • Magnetic Shirts: No buttons! [Silverts Adaptive Clothing] lets me dress independently.

DIY Hack: Slide rubber grips (cut from old bike tires) onto pens, toothbrushes, and combs.

3. Protect Your Voice – Before It Fades

Parkinson’s often weakens speech, but I preserved mine through daily practice.

My Vocal Workouts:

  • Sing in the Shower: Belt out show tunes—volume matters more than pitch.

  • Read Aloud to Pets: My cat tolerates Shakespeare; my parrot mimics vowel sounds.

  • LSVT LOUD Therapy: Medicare-covered speech therapy that taught me to “over-articulate.”

Key: Record your voice monthly to track progress.

Amazon Helpers:

  • [Personal Voice Amplifier] – Clip-on mic for clearer conversations.

  • [Hydration Tumbler with Straw] – Prevents dry mouth during talks.

4. Laugh at the Chaos (Yes, Really)

Parkinson’s serves up daily absurdities. Laughter disarms frustration.

My “Parkie Moments” Diary:

  • The day I accidentally threw my dentures in the trash (retrieved by a very confused neighbor).

  • When my tremor made me “applaud” during a funeral.

  • Mistaking cayenne pepper for cinnamon in my oatmeal (a fiery breakfast surprise).

Why It Works: Laughter releases dopamine—the very neurotransmitter Parkinson’s depletes.

Tool: [Laughter Yoga DVD] – Guided exercises to boost mood.

5. Build a “Parkinson’s Posse”

Isolation worsens symptoms; community is curative.

My Support Network:

  • Local Rock Steady Boxing Class: Punching bags with fellow Parkies builds strength and camaraderie.

  • Online Forum Friends: The [Parkinson’s Reddit group] shares 24/7 tips and dark humor.

  • Family “Parkinson’s Nights”: Monthly dinners where grandkids imitate my dance moves (we award prizes).

Pro Tip: Ask your neurologist about Medicare-covered group therapy.

6. Track Symptoms Like a Detective

Early intervention prevents crises. I’ve logged symptoms for 15 years—here’s how:

My Tracking System:

  • Color-Coded Journal: Blue = mobility issues, Red = medication side effects, Green = good days.

  • Monthly Video Diary: I film myself walking and speaking to spot subtle changes.

  • Medication Alarms: Pill reminders on my watch and fridge.

Game Changer: [Parky App] – Tracks tremors, sleep, and meds in one place.

7. Plan for the Future – Without Dread

Parkinson’s is progressive, but advance planning preserves dignity and control.

My Preparedness Checklist:

  • Legal Docs: Updated will, healthcare proxy, and POLST form.

  • Home Modifications: Grab bars, stairlift, and non-slip floors installed early.

  • Memory Books: I’ve written letters for future grandkids’ milestones (birthdays, graduations).

Peace of Mind: Discuss care preferences with family now—not during a crisis.

Tool: [The Parkinson’s Care Partner Notebook] – Organizes medical info in one spot.

Amazon Products That Empower My Journey

These affordable tools help me live boldly:

  1. Tremor-Friendly Writing Aid [Weighted Pen]

    – Lets me journal without scribbles.

  2. Heated Massage Gloves [Thermotex]

    – Eases stiff fingers and improves circulation.

  3. Medication Dispenser with Alarms [Hero]

    – Automates pill schedules and alerts caregivers if missed.

  4. Balance Board [Yes4All Wooden Board]

    – Improves stability during commercial breaks.

  5. Adaptive Gardening Tools [Radius Ergonomic Set]

    – Arthritis-friendly pruners and padded kneeler.

Final Wisdom: Parkinson’s Is a Chapter – Not Your Whole Story

Twenty years with this disease have taught me that resilience isn’t about defying limits—it’s about redefining what’s possible. I’ve buried friends who surrendered to despair and celebrated others who danced at their own pace.

Your Turn: Plant a seed today—literally or metaphorically. Write one sentence in a journal. Hum a tune. Parkinson’s may shape your days, but it doesn’t own your spirit.

Last Line in My Diary: “Today, I fed the roses and forgot my pills twice. Still, the sun was warm, the bees buzzed, and I laughed. Call that a win.”