A friend from our years living in suburban New York City with common media careers and a liking for golf, Dave and family moved to the Chicago area fifteen years before Terry and I did seven years ago. In reconnecting, we learned we each share something else in common. Parkinson’s Disease. Unknowingly, we each signed up for the same PD support group at Northwestern Medicine greeting each other by asking “What are you doing here?” and meeting each other where we are in life. During our first “Par for Parkinson’s” golf event, where over 1000 holes were played for Parkinson’s mostly by friends without Parkinson’s, it was Dave’s shot that was the closest to the pin for the day finishing three inches from a hole-in-one. Chalk one up for resiliency and adapting to play activities we enjoy. Dave’s motto is “Live, Laugh, Love and Last!”

“I am so pissed off.” Such was friend Mary Ann’s battle cry when diagnosed with Parkinson’s Disease.   Mary Ann was a consummate fighter which is to be expected from a twenty-two-year former alderwoman in the rough and tumble world of Chicago politics.  A life-long activist, Mary Ann channeled her anger about having Parkinson’s into constructive action by customizing an action plan for her treatment and helping communities - neighborhoods, family, the Village committee she advised - learn about Parkinson’s.

Some years ago, my Dad invited me to attend a support group discussion with him held monthly at the Covenant retirement community where my parents live.  Dad didn’t get out much at the time and increasingly relied on a wheelchair. I was uncertain about how sharing my younger life stage expression of Parkinson’s might be relevant for those who are elderly and more advanced with the disease. Yet since it was an opportunity to get Dad moving on a topic dear to us, I enthusiastically agreed. We arrived with me wheeling Dad into the conference room among elderly residents with Parkinson’s and their caregivers. Kathleen, the moderator, turned to Dad first for his story. The assembled group must have expected to hear Dad talk about his living with Parkinson’s.  Instead, Dad humorously flipped the script saying three words, “I’m with him.”  My being the one of us with Parkinson’s surprised the group seeing how we arrived.

Our experience teaches each of us to listen and learn from who this condition puts in front of us. I learned that while we are all at various life and condition stages there is opportunity to support and inspire each other towards joy and friendship in the adversity and challenges we face. Dad has since passed. Gratefully, I take inspiration from his lasting three words, “I’m with him.”

Ed is my father’s best and life-long friend born to Italian immigrants in common heritage from the same town in Italy.  Ed is a person of high character, an Evans Scholar at Northwestern University where he excelled in study and playing collegiate baseball. Ed is a family man who lives life with a zest inspired by his Italian heritage. Diagnosed eight years ago at age eighty-five, Ed advocates for staying active reminding me and us that “motion is the lotion.” Ed finds it important to have a day at a time attitude, do daily exercises with enthusiasm, accept his condition, not feel sorry for himself, and most importantly continuously thank God for an abundance of gifts, especially family and friends.

Ed is pictured above with John, a dear friend of his and my dad. John had Parkinson’s and is my godfather.

Joyce fell at midnight on a dark trail we were traversing together in the swamps of central Florida during a two hundred mile relay event.  Our leaders, Bill and Joe, organized us into a team of eleven newly made friends all with Parkinson’s Disease.  There were one hundred teams in the event. We were the one comprised of athletes with a disability.

Together we ran, walked and traversed the trail course day and night over thirty consecutive hours.  Each of us did three trail segments, five to seven miles each in length.  We enthusiastically cheered one another on throughout.  Several of us fell, more often during our nighttime shifts due to unseen trail fall offs, exposed tree roots and sizable rocks enlightened only by our head lamps.  Lurking in our minds was the possibility of encountering an alligator or rattlesnake. 

Twice Joyce stumbled and fell when tripping on unseen tree roots. Seeing Joyce courageously get up from bruising falls and carry on reminds us the significance of our journey isn’t that we stumble and fall, rather it’s that we get up and carry on.

My friend Jacob noticed a bulletin board advertisement in his town for fishing lessons given by a ten-year old boy at a community pond. In accompanying his five-year old daughter to her first fishing lesson, Jacob met the boy’s father, named Peter, who shared with Jacob that he has Parkinson’s.  Jacob subsequently introduced Peter and me in common friendship. Remarkably, a ten-year old boy giving fishing lessons to a five-year old girl united two men with Parkinson’s in friendship. It’s another example of finding good people who care when we share, this time inspired by children. Good things happen when we share – and go fishing.

Debbie asked, is this the Mike DeBartolo who worked with her at J. Walter Thompson thirty-five years ago?  I replied, “yes it is.”  My lost and found story posted on the Parkinson’s Foundation website caught the eye of my former colleague and friend. I had lost contact with Debbie when she moved overseas, and my wife and I moved to Detroit.  In renewed friendship, we learned our fathers live with debilitating health conditions. Debbie’s father struggles with his health exasperated by Parkinson’s. Parkinson’s reunited us in friendship inspiring each of us in care for our fathers. We now call each other in care and prayer for our dads. By sharing we can make new friends in the community and renew friendships like Debbie and I have.

Friend to the Parkinson’s community, Gregg hosts a weekly radio show called Veterans Voice listened to by thousands of veterans in the Boston area and New England region. The show shares information about benefits, programs and resources available to veterans as well as stories of encouragement and inspiration. Featured guests often include senior officials from the VA and various veterans care organizations. Gregg is devoting increasing attention to Veterans with Parkinson’s recognizing veterans are ten times more likely to have Parkinson’s, presumably due to toxic exposure and traumatic head injuries.  Veterans focused team members with The Michael J Fox Foundation appear from time to time on Veteran’s Voice.   We can be grateful friends like Gregg bring our community together for each other including the needs of our veterans with Parkinson’s.

Many of us are grateful The Michael J Fox Foundation has created a service for those of us seeking connectivity and understanding among our Parkinson’s community, one person at a time. It’s called the Buddy Network which utilizes filtering software to connect those of us in similar journeys living with Parkinson’s by common interests, condition, and life stage. It’s where I made friends with Patrick and Andrea.  Each are challenged like me in fitness activities we like to do, notably running longer distances. Through correspondence, phone conversations and in person visits we cheer each other on and share ways we adapt our workouts and enjoy our playtime. It’s been inspiring to lean on each other and a healthy reminder we are not alone.

What’s going on here?  People with Parkinson’s, a disease we know can bring with it life shaking confusion, uncoordinated movement and compromised cognition, are smiling, laughing and having fun playing together each week.  What are we playing?  Golf, tennis and a nearly forgotten childhood pastime. Ping pong. 

People with Parkinson’s are finding therapeutic value, joy and friendship playing in the program we call Parkinson’s Players, co-founded by Linda, a caring woman who leads Northwestern Medicine health and fitness programming for those of us with Parkinson’s.  Since launching last summer, there are now over one hundred people with Parkinson’s registered and enjoying Parkinson’s Players in the Chicago area. 

Parkinson’s Players show us Parkinson’s Disease is not a death sentence rather it can be a life story; a grace filled journey, complete with making new friends and playing activities we enjoy together.  

Amid Michael J Fox’s amazing mission and messaging for our community, what I hear most from him is gratitude. How can we who are dealt a tough, life altering hand in life be grateful?  Or how can we not?

Wouldn’t gratitude for the caring people in our life, for the joy in life, for what we can do in life, for beauty we can see in life be a healthier way to live than being angry or defeatist about what we can’t do. No wonder Michael J Fox is so grateful. I can be too.

Pope John Paul II and Billy Graham each persevered living with Parkinson’s later in life inspired by faith in God and their calling to lead the flock. Each showed us spiritual hope and resolve in our human condition through faith in God’s grace and love.

Five years ago, when about to post “My Lost and Found Story, Living with Parkinson’s Disease,” my wife Terry insisted, “you can’t tell that story leaving out all the bad stuff.”  Terry could readily see I had drafted my Parkinson’s story without citing the hardship, anxiety, and life shaking disruption that Parkinson’s brings with it. 

Terry’s insistence reminds me she lives with Parkinson’s as much as I do.  This isn’t just my Parkinson’s. It is hers too. It is ours to share. The good, the bad, the joys, the challenges.  Day by day.  Thank God our love for one another shows me with Terry, more than anyone, I am not alone.

For me, I see Parkinson’s as an opportunity, an invitation to inspire myself and inspire others. I live with Parkinson’s, emphasis on the living. I am grateful for loving family and caring friends. I see our Parkinson’s community as living proof we are not alone. I lean into faith in God, giving it up knowing we can always choose hope.