Living with early onset Parkinson’s 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 over 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.” Yes, give up.  Not quit.  Rather, 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.  I trust God is for me, with me, by me and never against me.  Amidst life-shaking confusion pre-diagnosis, I reminded myself life is not a sprint it’s more like a marathon. I have come to recognize Parkinson’s gifts in my slower pace, savoring the daily joys encountered in life and seeing God in others.  Paradoxically, Parkinson’s hardship brought peace.

Career Transition

Parkinson’s meant I needed to transform my work life.  Professionally, I enjoyed a thirty year media and magazine publishing career in leadership roles with several of America’s largest magazines during their peak years including TV Guide, Condé Nast and Parade Magazine, America’s most circulated and read magazine at the time.  When my undiagnosed Parkinson’s emerged and disrupted my life, it handicapped my ability to meet the pace of dynamic leadership roles I had held.  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 while I can no longer run a marathon, 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 the virus yet open for walkers. The six walking rounds equaled a marathon. Joyfully, my wife Terry, daughter 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.

Inspiring Friendship

 Moved to hear his story about completing several Iron Mans with Parkinson’s, I met Chris Dell last fall in a talk among those of us with early onset Parkinson’s coordinated by our common caregiver, Northwestern University Medicine.  Chris inspires with his upbeat, can do attitude.  He invited us to join him in his training workouts.  After our first training session together, I returned home and shared my enthusiasm with Terry, my loving and patient wife of thirty years, about the fun Chris and I had doing track sprints together.  Terry knew instantly it had me thinking about doing an Iron Man too.  Terry was understandably reluctant.  We agreed to move forward only if my doctor approved (she did) and providing the training strengthens rather than weakens me.  I had my site set on the Iron Man this November in Cozumel Mexico.  Chris is an encouraging, ideally suited training partner. Iron Man participants are required to finish in 17 hours. God willing, I would open water swim 2.4 miles within an hour and a half, 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.  Completing 112 miles by bike didn’t seem achievable.  Meanwhile, most if not all organized Iron Man events are cancelled or postponed this year due to COVID.  So I pivoted to do my own untimed half Iron Man in my home area.  I adapted my journey and my goals to fit conditions swimming 1.2 miles in Lake Michigan, biking 56 miles up and down the scenic lakefront and walking 13.1 miles with Parkinson’s friend and training partner Chris cheering me on by my side.  What a thrill.  What a friend.