Living with Young Onset Parkinson’s disease has been an amazing life journey of lost and found. For me, undiagnosed Parkinson's brought with it confusion, compromised coordination, less energy, sleepless nights, uncontrollable shaking, susceptibility to stress and career transition. Upon diagnosis, Parkinson’s motivated my resolve to live with Parkinson’s in ways that inspire. I am hopeful my story can inspire your resiliency and journey with Parkinson’s.
Seeing Parkinson’s as an Opportunity
Facing compromised physical, mental and neurological health and an uncertain future, I was bewildered searching for answers to what I later came to understand was Parkinson’s gone undiagnosed for more than five years. Before diagnosis, I learned I couldn’t handle my condition alone.
Thankfully, I leaned into sources of strength, gifts in my life. Faith in God and a loving family. Upon diagnosis, I also came to better appreciate the vital importance of caring friends, playtime, attitude, community and expert medical care. I learned to lose stoicism, avoid playing victim and rather find opportunity, find grace.
My Parkinson’s diagnosis lifted a veil of uncertainty. It identified a condition I have, not who I am. It provided certainty even while Parkinson’s impact in my life ahead is uncertain. I was relieved. I understood Parkinson’s is a condition I can live with. And by sharing my condition with family and friends and reaching out to our Parkinson’s community, I knew I wasn’t alone.
Leaning into Faith – Giving Up
Overwhelmed and confused by Parkinson’s, I chose to “give up.” I found giving up control in life to God’s loving care lightens my journey. I found leaning into my faith in God has been vital to my attitude, outlook and resolve living with Parkinson’s. Amidst life-shaking confusion pre-diagnosis, I reminded myself life is not a sprint it’s more like a marathon.
Parkinson’s meant I needed to transform my work life. Professionally, I enjoyed a 30 year media and magazine publishing career in leadership roles with several of America’s largest magazines. When my undiagnosed Parkinson’s emerged, it handicapped my ability to meet the pace.
Lost in career uncertainty and transition, I motivated to find a second career where I could make a difference for communities in need at a pace I could handle, I discovered joy in fundraising for causes important to me. The pace is more manageable, the work is mission inspired and the friendships made are a blessing.
Learning to Walk Again
Parkinson’s has me learning new ways to enjoy my favorite athletic activities by adapting my game plan and the way I play. For example, the year after finishing the 2011 New York City Marathon, I lost my ability to run distances. My left side began shutting down after a half mile or so of running. This ended the jogs I enjoyed most with my teenage daughter Anna. It also shelved, or so I thought, my hope for doing more marathons.
Adapting to circumstances, I figured that I can enjoy walking them. I did twice last year rediscovering Chicago’s beautiful Lake Front. Most gratifying, was the marathon walk I enjoyed with Anna during her stay with us last summer. One day this spring, I walked six consecutive “rounds" on our local golf course, which had been closed to golfers because of COVID-19. The six rounds equaled a marathon.
Joyfully, my wife Terry, Anna and sister Mary each joined for a round cheering me on. Parkinson’s showed me new joys to savor with family. My loving parents had often encouraged me to slow down my, at times, hyper active pace in life. Recognizing their encouragement and an unexpected gift from Parkinson’s, I have learned to walk again.
Moved to hear his story about completing several Ironman races with Parkinson’s, I met Chris Dell last fall during a Young Onset PD educational event at Northwestern University Medicine, a Parkinson’s Foundation Center of Excellence. Chris inspires with his upbeat, can-do attitude. He invited us train with him. After our first training session together, I returned home and shared my enthusiasm with Terry, my loving and patient wife of 30 years, about the fun Chris and I had doing track sprints together.
I began thinking about completing an Ironman, but Terry was understandably reluctant. My doctor approved training, provided that the training strengthens rather than weakens me. I was training for Ironman this November in Cozumel, Mexico. Ironman participants are required to finish in 17 hours. God willing, I would swim 2.4 miles within 90 minutes, bike 112 miles within eight hours and speed walk the marathon in seven hours; and along the journey, inspire myself and hopefully others.
Instead, during bike training, my left side began to weaken significantly and became uncoordinated. The bike portion didn’t seem achievable. Meanwhile, most Ironman events were cancelled due to COVID. So I pivoted to do my own half Ironman. I adapted my journey and my goals. I swam 1.2 miles in Lake Michigan, biked 56 miles and walked 13.1 miles with my training partner Chris cheering me on. What a thrill.
Playing a New Way
In my younger years I had been a competition-level golfer. My love for the game was life-long, until Parkinson's disabled my playing. I went five years without making a single birdie, something I had routinely done prior. Frustrated, and unwilling to throw in the towel, I noticed my Parkinson’s did not adversely affect my backhand movements. I eventually discovered one handed lefty putting. I now putt much better. I began chipping lefty, too. I reshaped my golf swing to accent a backhand motion.
After five years of making no birdies, I now usually make one or two a round. Once a low handicap golfer, I now enjoy golf with a handicap by adapting the way I play. I enjoy playing again with friends and most of all my son Joe resuming our father-son golf adventures. More recently, Peter and Anna discovered fun playing the game together too.
On Court Resiliency
On the tennis court, I had been a competitive player using an unconventional forehand, which I now attribute to early signs of Parkinson’s. In more recent years, I could no longer consistently toss the tennis ball or coordinate my body to hit a tennis serve. An opponent asked if I had had a stroke.
I went from having endurance for three hour matches to having my legs deadened after 20 minutes. Two years ago my doctor and I shifted my medicine to Levidopa. My coordination improved enough to serve better and have enough energy to last 40 minutes with new tennis playing friends. Parkinson’s, tennis friends and expert medical care fuel my ambition.
For years my sons, Peter and Joe, and I would enjoy half day and full day trail hikes together, scaling mile high mountains in the Adirondacks of New York, the White Mountains of New Hampshire and National Parks out West. When my PD symptoms developed, scaling boulder fields and navigating mountain cliffs together became past memories.
Instead, we now enjoy flatter trail hikes gazing up at nature's beauty which Peter, his girlfriend Lydia, Anna and I did together last summer in the Grand Tetons. By changing altitudes and enjoying the view gazing up rather than down, Parkinson’s showed me where to re-look at the world together with my children in amazing journeys. Terry and I are now planning our next mountain lake trek to the Grand Tetons and Yellowstone.
Enjoying the Journey
Once ultra-focused on life goals, I’ve learned to slow down and enjoy life’s journey. I’ve learned to pay more attention to people and places I encounter day to day in the moment. I am learning that the better things in life sometimes come as interruptions to my plans.
I am learning that living with Parkinson’s inspires my faith and invites gratitude for loving, caring people in life; sharpens my empathy towards others who face challenges in life too; encourages patience to savor life’s joys; and find new ways to play favorite activities. Maybe living with Parkinson’s isn’t such a bad thing after all.
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