CHAMPs > Parkinson's CHAMP
March 2014 - Jersey Bouncers
My wife, Ronnie, was diagnosed with Parkinson's in 1989 at the age of 46. She kept working for five more years post diagnosis, but the stress of sales presentations and travel exacerbated her symptoms so much that she had to retire on disability. Those were difficult years for Ronnie, as she was forced to confront the harsh reality of the Illness that was degrading her life.
Partly by strength of character and partly by denial, Ronnie refused to surrender to the physical limitations imposed by Parkinson's. Sadly, over the years, several auto accidents, many falls with head trauma and broken bones, and numerous trips to the emergency room resulted. We attended a few support group meetings, but, for Ronnie, those experiences seemed to produce more, not less, anxiety. It was very difficult emotionally for Ronnie to accept Parkinson's as part of her reality.
One of Ronnie's first truly public outings as a person with Parkinson's was our attendance at the 1997 Parkinson's Unity Walk, the 4th annual PUW, and our first. We attended with Ronnie's mother, sister, and our daughters, unaffiliated with a team. It was a day of tears, but also a day of exhilaration, as the optimism, friendship and feelings of community infected us all. We learned more about PD and its treatments, and left with information about resources that we could avail ourselves of in the future. And Ronnie's emotions were buoyed by the support of her family and the knowledge that she wasn't facing this illness alone.
After that Walk, Ronnie and I explored several different support groups in New Jersey until we settled on the Parkinson's Support Group of the Greater Ridgewood Area (PSGGRA), which meets in Wyckoff, New Jersey. The PSGGRA had monthly meetings with a speaker on topics of interest to the Parkinson's community. By our frequent attendance at these support group meetings, Ronnie and I felt more and more a part of the Parkinson's community. Not only did our understanding of Parkinson's grow, but in addition, we made friends with others who were experiencing the same struggles as we were, and consequently felt less alone in our own struggles.
About eight years ago, the founder of the PSGGRA retired, and I and another caregiver took up the mantle of leading the support group. We initiated an additional monthly meeting in which those with Parkinson's and their caregivers meet separately for a confidential, more intimate sharing of experiences, feelings, and information. The need for these meetings is evident. As Parkinson's progresses and new motor and non-motor symptoms appear, the need for information and new coping strategies continues. And patients and caregivers are in constant need of emotional support, as they grieve for the losses each suffer as this ruthless illness progresses. At the PSGGRA patient and caregiver groups, we laugh together and cry together. Each meeting helps restore our emotional resources. I am reminded of a Swedish proverb: "shared joy is twice the joy; and shared grief is half the grief." With the assistance of others, I have been leading the PSGGRA myself for the past four years.
Since 2006, one of my greatest pleasures has been to lead a team representing our support group at the Parkinson's Unity Walk. First named the North Jersey Walkers, and now the Jersey Bouncers Stronger, we will be walking again this year. Since the 2007 Walk, the PSGGRA has annually sponsored a bus to the Walk, transporting not only the Jersey Bouncers team, but also members of other teams such as the Dreamwalkers and Miracle Marvins.
It is no surprise that those who have participated in the Parkinson's Unity Walk return to walk again and again. The Walk itself is a joyous affair, filled with hope, friendship and camaraderie. All of us want to do something about Parkinson's disease, to relieve the suffering of our loved ones. As a caregiver for 24 years watching Ronnie gradually succumb to this relentless disease, I have too often felt helpless. To me, the most special thing about the Walk is the opportunity it provides to actually do something about Parkinson's.
Ronnie died in August 2013 at 70 years of age. My family and I will continue to walk to honor Ronnie's memory, and help find a cure for Parkinson's.
Team Captain, Jersey Bouncers Stronger