“But I have young children.” These five words quietly left my mouth before any others when Dr. T shared his startling news, “What worries me is that I think you are in the early stages of Parkinson’s disease.”
At 48 years old, with daughters aged 10 and 8, the shock of a diagnosis collided in that small exam room with immediate fears tied to uncertainty. These fears related to many aspects of my life — physical health and functioning, career and social networks, marriage and family — but my immediate, raw, unreflective response to Dr. T centered on my children and their wellbeing. As Anne Lamott noted, “There really are places in the heart you don’t even know exist until you have a child.” [i]
In the coming weeks and months, my fears began to give way to resolve, and my naivety about Parkinson’s disease, to greater awareness and knowledge. Still, I had loads of questions; many of them pertained to being the best father I could be. Would I watch my daughters grow into adulthood? Would I be able to remain an active part of their lives, doing physical things we enjoy such as swimming, basketball, and running? Would their concerns about my health rob them of childhood freedom and joy?
Since that moment in the exam room four years ago, I have learned a great deal about Parkinson’s, myself, and my parenting. Among the unanticipated discoveries is that parenting with Parkinson’s provides more opportunities than losses and a chance to offer children life lessons that you might not otherwise offer them because you do not understand these lessons yourself.
These lessons include facing life’s hardships, finding joy, and pivoting toward open doors when those previously open begin to shut. I have also learned that our children can teach us to live well with Parkinson’s through their own personal examples of determination and resilience, but also through their immeasurable joy over life’s simplest moments: looking at a vivid harvest moon, skipping rocks across a glassy lake, or laughing with friends or family gathered for a meal.
Which brings me to another realization. Parents of younger children who face the rude interruption of Parkinson’s in mid-life suddenly have two enormous responsibilities. The first is continuing to be the parent you want to be, and that your children need you to be. The second is to take care of yourself, physically, emotionally, even spiritually, so that you can thrive in parenting and life.
I have found it helpful to build friendships with others who are striving, and sometimes, struggling, to meet these two responsibilities. These relationships offer opportunities for shared learning, mutual support and encouragement, and allied efforts to step with both feet into the turbulent, sometimes scary, but also replenishing waters of parenting with a chronic illness.
In this spirit of friendship and solidarity, I invite you to learn more about my journey with Parkinson’s and parenting, which I write about in three pieces for PDWise, a hub for sharing personal stories, experiences, and wisdom gained from living with Parkinson’s disease. The pieces include A Letter to My Daughter on Determination; A Letter to My Daughter on Resilience; and A Parkinson’s Anniversary Letter to My Daughters.
I also welcome hearing from you, so that my daughters and I may learn from your experiences, too. Email me at firstname.lastname@example.org.
We are on this journey together.
For more information, read The Michael J. Fox Foundation's guide on Talking to Children and Teens About Parkinson's.
Allan Cole is a professor in The Steve Hicks School of Social Work at The University of Texas at Austin and, by courtesy, professor of psychiatry in the Dell Medical School. Diagnosed with Parkinson’s in 2016, at the age of 48, he serves on the Board of Directors at Power for Parkinson’s, a non-profit organization that provides free exercise, dance, and singing classes for people living with Parkinson’s disease in Central Texas, and globally via instructional videos. He also serves as a Community Advocate for ParkinsonsDisease.net, writing columns about living well with Parkinson’s. He is author or editor of 12 books on a range of topics related to bereavement, anxiety, and spirituality. His two forthcoming books (2021) are Counseling Persons with Parkinson’s Disease (Oxford University Press) and Discerning the Way: Lessons from Parkinson’s Disease (Cascade). Follow him on Twitter @PDWise.
[i] Anne Lamott, Operating Instructions: A Journal of My Son's First Year, New York: Anchor, 1993.