My PD Story

John Foley and family
People with PD

John Foley

My journey with Parkinson’s disease (PD) began at age 65, when I received a PD diagnosis. Doctors believe I had Parkinson’s for about four years prior to diagnosis. One chapter of my PD journey concluded with deep brain stimulation (DBS) surgery followed by programming and meeting with my neurosurgeon. My goal is to continue to enjoy adventure travel, cycling, photography and playing music with friends for as long as possible. There’s no doubt that DBS will add years of quality time to my life.

I began writing poetry as a catharsis for dealing with the disease and treatments. Up until my diagnosis, I had never written or even been particularly interested in poetry. Looking back, my brain’s response to the stress and adversity emerged in the form of poems that created an emotional vocabulary to express the disease at a visceral level. I never intended to share these poems with anyone.

Having come through the other side of the DBS process, and at the request of my neurosurgeon Dr. Kendall Lee, I felt it was important to share my work to give others a real understanding of the process of treating Parkinson’s with deep brain stimulation. This experience inspired me to write a book titled No Turning Back: Journey from PD Diagnosis to DBS Surgery. The goal of the book is to change antiquated perceptions about DBS as a treatment of last resort for people with PD.

I had the good fortune of working with Mary GrandPré, whose talent and artistry interpreted my words and infused a level of visual emotion beyond my imagination. I hope you will find this writing to be honest, raw, vulnerable and accessible. This is one patient’s experience with DBS.

I have also connected with the PD community through volunteering for the Parkinson’s Foundation. My daughter, wife and I volunteered for Moving Day Twin Cities in Minnesota. It was a great experience that we plan to repeat for years to come. We are also hosting a No Turning Back book launch event at the Walker Art Center in Minneapolis, with all ticket and book sale proceeds going to the Parkinson's Foundation.

Download a copy of No Turning Back

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