Parkinson's: Life Lessons Five Years into the Journey

By Gerry Hill

At age forty-eight, my life changed dramatically when I received my diagnosis of early onset Parkinson's disease. How could this be possible? I'm not an old man! This diagnosis has placed me at the starting line of a difficult journey. Looking back at the first five years of my Parkinson's life, I can see a bit more clearly now how this all came together. I have learned about the disease, but I have also, more importantly, learned from the disease. This book is my story of how my diagnosis was reached and how I started on my Parkinson's journey. I have learned many lessons along the way, and I have passed along my most important discoveries in this book. It is my hope that those who read it will get a better perspective of the daily life of a Parkinson's patient as well as see that successes can be reached along the way. Enjoy the journey!

• Language: English
• Publisher: Fulton Books, Inc.
• Release date: Aug 9, 2021
• ISBN: 9781637108093

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Parkinson's: Life Lessons Five Years into the Journey

Gerry Hill

Copyright © 2021 Gerry Hill

All rights reserved

First Edition

Fulton Books, Inc.

Meadville, PA

Published by Fulton Books 2021

ISBN 978-1-63710-808-6 (paperback)

ISBN 978-1-63710-809-3 (digital)

Printed in the United States of America

Table of Contents

Golf Can Be a Real Pain

What Are You Afraid Of?

Tests and Other Examinations

Moments of Truth

Life Lesson 1—Mind over Matter

Life Lesson 2—It’s All a Matter of Perspective

Life Lesson 3—the Pillars of the Parkinson’s Pathway

Foreword

In October of 2016, I received life-changing news. I had been diagnosed with early onset Parkinson’s disease at age forty-eight. In the past five years, I feel as if I have been on a unique journey. This journey has had many pitfalls and challenges, but it has also contained memorable experiences through which I have learned how to better handle my circumstances as a Parkinson’s patient and work to maintain a high quality of life. I have also learned to appreciate those around me more than I have in years past. My family has been an amazing source of support through these first five years of my diagnosis, and I am blessed to work in a school containing some of the most caring and compassionate faculty and staff members anywhere.

In October 2020, I began to get the idea to write this book. I wanted it to be a record of my journey and a detailed account of my diagnosis. Since starting this book back then, it has evolved into something else. I have found the writing to be quite therapeutic for me. It has helped me come to grips with my own failures and missteps along the way in these past few years. As I finish with this project, I know my journey with Parkinson’s will continue. It is my sincere hope that I have learned something through these writings that will keep me centered and on track for a successful life in the years to come. I also hope that others who either have Parkinson’s or support someone who does can take some encouragement from my experiences and apply some of the lessons I have learned to their own lives. If my story helps at least one other person have a more comfortable and productive journey, then I will consider this project a rousing success. Even if that does not happen, I can still appreciate what I have learned and work to make the next five years even better than my first five!

Part 1

The Backstory

Chapter 1

Golf Can Be a Real Pain

You have early onset Parkinson’s.

Stunned silence and disbelief followed those words from Dr. Dinesh Raju, a neurologist at the Gwinnett Clinic in Lawrenceville, Georgia. Did I really just hear that? There must be some kind of mistake. I’m only forty-eight years old! Parkinson’s is what seventy- and eighty-year-olds get. Not me!

I’ll give you some time to talk things over with your wife, and then we’ll discuss what things will be like going forward.

With those simple words, Dr. Raju stepped out into the hallway, closing the door behind him but ushering a new life scenario into my existence. Going forward, he said? I guess that is better than going backward!

I still could not believe what I had just heard. The tears found their way out as my newly revealed neurologically challenged brain was spinning in the small medical room. How could this be? What have I done wrong? All these questions would be dealt with over time, but at the moment, they seemed almost as unsolvable as a million-piece jigsaw puzzle of a picture of the calm Atlantic Ocean—with maybe a few hundred pieces missing. I guess I had to start somewhere, so in my best find the edge pieces first mentality, I started thinking about how this all started and how I had come to this stunning revelation in a small medical exam room in Georgia. I hoped that by looking back, this would all make a bit more sense. In the end, it probably did help to look back and see the journey that I had traveled as well as the new and more challenging journey that was ahead of me.

*****

Decisions, decisions. Hit the driver? Be safe with a 3-wood? Challenge the water hazard? Normally, an established golfer would engage in these very mental gymnastics as they stand on the first tee box ready for competition. Let’s be perfectly clear…these are not an issue for me on the golf course as I can only dream of calling myself an established golfer. My decisions are more along the lines of, Do I want to shank this drive into the woods on the right or duck hook this one into the tall weeds on the left? While these are different decisions, they must still be made while on the opening tee box of the 2016 Blackberry Cobbler Open at Apple Valley Golf Club in Lake Lure, North Carolina, on a beautiful June day.

I guess a little context would be appropriate at this point, lest you begin to think you have started reading the wrong book. My Parkinson’s adventure began on the first tee box of an annual golf outing contested between Cliff Shelton, Tim Vick, Jerry Spiceland, and me—the Blackberry Cobbler Open. This nonprofessional (understatement of the year) golf event featured teams of Mr. Spiceland and me taking on Coach Shelton and Coach Vick in a three-day golf extravaganza in which the stakes were critical—the losing team had to buy the winning team servings of the world’s best blackberry cobbler and ice cream at a local restaurant on the banks of a beautiful river flowing through the laid-back downtown portion of Lake Lure.

After struggling through the opening thirty-six holes on day 1, Team Hill-Spiceland trailed by a fairly massive fifteen points (using a modified scoring system awarding different levels of points for varying scores on a hole), but we were determined to make a dramatic comeback on day 2 as we headed over from the Rumbling Bald Resort course to the Apple Valley course. Today, we had decided, would be different. Of course, different could mean something as simple as making contact with the golf ball in such a way as to be able to locate it without an organized search party.

How about a little inspiration off the first tee? Mr. Spiceland joked, channeling his inner Jack Nicklaus.

Age before beauty!

And with that, we were underway, after a brief search for a golf ball (or two) in the rough along the right-hand side of the opening fairway. The round was progressing nicely as Team Hill-Spiceland began to slowly chip away at the Team Shelton-Vick lead through the opening nine holes. We headed to the back nine with a sense of growing confidence, praying that this was not just false bravado but, instead, an actual comeback. Then it came, the moment of truth, a dynamic moment that rings clearly in my mind even all these years later.

After a decent drive (defined as one that was over two hundred yards and findable rather quickly), I was faced with a fairly simple layup shot on this long par-5 tenth hole. Grabbing my 3-wood, I aimed for a clear spot down the left side of the fairway, hoping to just have a wedge into a rather large green. In my state of delirium from having hit the fairway for once, did I dare even consider the possibility of making a legitimate birdie or, worst-case scenario, a par?

At the moment of contact, instead of experiencing the expected joy of striking a golf ball cleanly and crisply and on line, a twinge of pain gripped my left shoulder, causing an immediate release of the club as it went sailing a few yards to the left, much to the delight and entertainment of my playing opponents. As I recall, this was the first time I had cursed in front of colleagues. Instead of changing the mood, I think the choice words caused both Coach Shelton and Coach Vick to double over with laughter, at least at first.

That might be the farthest your 3-wood has ever gone! chirped Coach Shelton.

"You got all of that one!" chimed in Coach Vick.

Even I brushed it off with as much of a calm, cool, and collected veneer as I could muster and even got a bit of a laugh out of it as the initial shock of the pain subsided some over the next few minutes. While trying to get through the experience, my golf game suffered a bit. There would be no miraculous tenth-hole birdie or even a par, as the shanked 3-wood did not serve me well. I considered myself lucky to have gotten a double bogey 7 on that turning point of a hole.

Considering the circumstances, the rest of the back nine was fairly tolerable. After starting the day with such a deficit, my team had made some progress. Instead of being fifteen points behind, we were only nine points behind after the first eighteen holes of the day. Round 2 and the continuation of our planned staggering comeback were still to come. My body, though, had other plans in mind.

Upon arriving back at our condo after a grueling thirty-six-hole day, we all crashed and got ready for dinner. Steaks would soon be on the grill, and the world’s largest baked potatoes were soon ready for consumption. The grilling, though, was not just limited to the steak preparation. Coaches Vick and Shelton made sure to remind Mr. Spiceland and me about the scores on the course for the day and the commanding twelve-point lead they had going into the final day of competition—thirty-six holes to decide the championship of the open. Trying to be a good sport about it all (especially after the colorful tenth-hole commentary I provided), I took the jabs in stride but began paying more attention to the jabs I was experiencing in my shoulder. The pain was coming back, and my left arm seemed a bit jittery. That was the word I used that night while talking to my wife on the phone. We were both convinced that it was not really a big deal and that it was just a strain or something. Looking back at those moments with around four or five years of advanced perspective, I can see more clearly now that this was probably the first manifestation of something that was about to come into my life and change my perspective on a lot more things than just my golf game and an occasional shoulder pain.

It was decided that I would simply try to take it easy on the final day of the trip and not make things any worse. As I saw it, at least I now had a built-in excuse for the failed state of my golf game. While the validity of that excuse was challenged by my opponents in the pen, at least I would know going in that if I played badly (a likely scenario considering my overwhelming lack of talent, even in a fully healthy state), I could blame my inadequacies on some external factor beyond my control. Of course, had I gone out the next morning and fired a career-best round in the first eighteen holes of the day, then what would I say? Maybe I should injure myself more often? Needless to say, I was spared from solving that predicament.

While the prize for the champions of the outing was delicious blackberry cobbler (made even more delicious, according to Coach Shelton, by the fact that I paid for his enormous serving), the final rounds on the course brought me a heaping helping of humble pie as our deficit grew throughout the day. Twelve points became seventeen…then twenty…then… Well, I stopped counting when I ran out of fingers and toes. My shoulder did not react well to the two rounds of golf, and I was convinced that the likelihood of some kind of injury was increasing. I even tried to use a sore shoulder as an excuse to not