Reflections on 5 Year Parkinson’s Anniversary

Far away there in the sunshine are my highest aspirations. I may not reach them, but I can look up and see their beauty, believe in them, and try to follow where they lead. ~ Louisa Mae Alcott

Five years ago on an ordinary beautiful South Florida day, May 13, 2014, I left my neurologist’s office going down an unpredictable extraordinary path. I had just been diagnosed with Parkinson’s disease. Signs popped up as early as 2011. However, until enough symptoms surfaced for the right doctor to observe, I thought my challenges were due to growing older.

What has my life been like the past five years? What have I given up? How have I adapted? To reflect on these questions, I turned to my lifelong personal values of helping people learn, continuing my education, preserving moments in time, expressing gratitude and having faith.

I value helping people learn.

I launched Parkinson’s My Way website, blog and Facebook page in 2018 to help people live quality lives and to showcase their creative side. Before PD, my personal mission was “to make a heartfelt difference” and that is unchanged. Through my sharing in Parkinson’s My Way, the intent is to educate, to inspire, and to give hope. Five artists and poets have been interviewed, and it’s been my honor to meet these incredible creative people with Parkinson’s and to share their talent and determination with the world.  Although I retired from a full-time career in education in 2013, I am blessed to continue teaching strategic management online for Northwood University—Michigan. In this senior capstone course, I am also my students’ loudest cheerleader to help them cross the finish line.

I value continuing my lifelong education.

The World Parkinson Congress took me to Portland, Oregon in 2016. My love of poetry was discovered after PD diagnosis and led me to study under the presidential inaugural poet Richard Blanco at Omega Institute in 2016. I was honored with a Cat Writers’ Association Muse Medallion for a cat poem The Morning Visitor in 2016. I studied English Country Houses at Oxford University in 2017 residing on the Christ Church campus and dining in the Great Hall. I was selected to attend the Palm Beach Poetry Festival in 2018 and studied under Mississippi state poet laureate Beth Ann Fennelly.

I value preserving moments in time.

I have been a top rated eBay seller since 2015 of anything vintage—from buttons to books. My writing is published in twelve anthologies, seven journals and one cat book. Nine of those publications have been in the past five years. I photograph cats, country scenes and abandoned houses. I have collected brooches for 40 years and still add favorites such as Christmas trees, women’s faces and cats to my collection when I travel.

I value expressing gratitude.

Every morning before I get out of bed I express one gratitude. Today it is living my best life the past five years with Parkinson’s. Every evening before I drift off to sleep, I count ten blessings for the day. Since 2010, I have created My ABCs of Gratitude in November to represent the current year.  A sample is as follows:

2014 Lexie Lee…our 12 years together
2015 Weinberg…a special healer
2016 Tai Chi…class 2 minutes from house
2017 Knight…picture with Coach Knight & brothers
2018 Yellowstone National Park…trip with Joe for memory bank

I know I am incredibly blessed in thousands of ways. I’ll always be in gratitude to  my dentist. In 2015, I fell on my face (nothing to do with PD) but due to a poorly maintained village sidewalk near my home. An ambulance took me to the emergency room where I had x-rays and was released with my two front teeth sticking straight out. My private driver took me to Dr. David Podbielski and with phone coaching from an oral surgeon, he popped my teeth back into place without them breaking off. I was a mess for several months. My jaw was broken and eating was difficult. I cancelled Christmas travel to the farm. The stress brought out the worst in PD and my medications were adjusted.

I value faith in God.

Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul.  Psalm 143:8

Rather than asking why do I have Parkinson’s, I ask why not me? I believe I have been given all the time I need to fulfill my life’s purpose.

How has Parkinson’s changed my life the past five years?

Before Parkinson’s,  medical appointments were routine and preventive, and the pills I took were vitamins. Now I spend over twenty hours a week on Parkinson’s self-care such as doctor’s appointments, physical therapy, support groups, exercise, tai chi, yoga, social media, reading, researching, writing and blogging. I am blessed to have Dr. Michael Okun at the University of Florida’s  Center for Movement Disorders and Neurorestoration  become one of my doctors in 2018. Having this world renowned movement disorder specialist on my care team is worth the five-hour drive and over-night stay.

I am in better physical condition than I was five years ago. Although my brain is short on dopamine, it is stuffed with PD knowledge.  Chemistry keeps me going. I take a baker’s dozen of pills a day to manage symptoms. Gotta love chemistry! Although I have excellent insurance, not all needs are covered, so I have to budget a hefty amount each year. I have learned to be mindful of the moment and to breathe through the pain. Dr. Adam Holleman, my physical therapist taught me to rub a tennis ball on stiff muscles or ones stuck in contracted state. In most instances, I can manage the pain and trust that I will be better in fifteen minutes! I wear a Lifeline necklace  for peace of mind and flat shoes for safety and comfort.

Suffering from Rapid Eye Sleep Behavior Disorder (RBD), I acted out  many terrifying dreams. I was chased, stabbed, drowned, robbed and even attended my funeral in these vivid and violent dreams. I screamed and talked out loud. When a jet plane landed in my bed, I was ready for medication. My last RBD dream was August 19, 2018 as  I started a bedtime pill the next night to shut down the disturbing drama.

In 2014-2016, I served as vice-regent of Daughters of the American Revolution of Seminole Chapter. DAR is near and dear to my heart and also represents my values of education, historical preservation and patriotism. I was on track to be on Seminole’s slate of officers as regent for 2016-2018. But due to PD, I withdrew. Two perfect trade-offs were waiting for me. In 2018, I was ask to serve on executive board as advisor to regent. I was also appointed chair of DAR School Committee and created an award winning project for Crossnore School in North Carolina.

How has Parkinson’s not changed my life the past five years?

PD has not changed the core of who I am or the essence of my soul. My longtime values still guide me in how I live and what I say “yes” to doing. A variety of interests still add richness to my life including antiques, travel, baking, animals, nature, reading, photography, poetry, family farm visits, education and DAR.

According to Danny Kaye,” life is a great big canvas and you should throw all the paint on it you can.” I keep a watchful eye on my yearning list and checked off five yearnings in the past five years. These included getting another cat (in reality the backyard stray Tortie adopted me!), returning to London for tenth time, staying in Mayfair Chesterfield, being an Oxford student for The Summer Experience and going to Omega Institute. I still go and do—but at a slower pace.

When my life gets too whacky

I do my best and forget the rest. I watch I Love Lucy and laugh until my stomach hurts. Or I make my signature dessert from the 1990s–Baked Alaska. In spite of Parkinson’s, some of my interests will never change!



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