My Parkinson's Story

My Parkinson's story begins in the Mekong Delta in '69-'70. That was the year I served with the 162nd AHC (Assault Helicopter Co). While in Vietnam, I flew as a door gunner on combat missions, did things I am not proud of, and saw things that no 18-year-old should ever have to see. I also remember the days the flight crews sprayed Agent Orange around the base in specially modified helicopters to clear the perimeter's defensive zone of the foliage that would sprout up. I recall breathing deeply of the vapers that would waft over our tent city, "Hell, this doesn't smell so bad!" I remember thinking.

Even so, for me personally, the worst horrors that I would witness in Vietnam would come twenty years later when I returned to the Socialist Republic of Vietnam on a USAID mission. The mission's purpose was to assess the effects that Agent Orange had upon the next generation of children- after the war. It was this generation that endured the worst of the consequences of a decade of widespread use of the toxic defoliant. The United States sprayed 19.5 million gallons of Agent Orange throughout the Vietnam War. The goal was to deny Vietcong fighters and North Vietnamese troops forest cover and food supplies. "The Vietnam Red Cross estimates that three million Vietnamese have been affected by dioxin, including at least 150,000 children born after the war with serious birth defects," said Andrew Wells-Dang, referring to the toxic chemical in Agent Orange. Hundreds of thousands of U.S. soldiers were also exposed. Our small assessment team crisscrossed the country, still in the early stages of rebuilding infrastructure after the war years. We were taken to scores of specially adapted homes for children, many of whom had unspeakable deformities. Despite the enormity of the situation, the authorities managed the houses clean and dignified. Since that trip in 1991, more than $125 million in assistance has been provided to persons with disabilities in Vietnam.

My body started to change

During the next 25 years, I continued my career in the humanitarian sector, specializing in cross-cultural leadership and disaster response. My wife and I were privileged to serve those in needy situations in Asia, Africa, and the Middle East. I traveled to more than 80 countries, and we set up households in 12 during those years. As my career began to wind down, I started to look for short-term assignments. It had long been my dream to continue my career well into my seventies. But life got in the way when I was engaged in a five-month, unaccompanied stint in Liberia. I was providing interim leadership to a Dutch NGO during the final stages of a nationwide outbreak of Ebola. I was walking down the street when I had an odd sensation that I was ten feet tall; my gait was changing. I also noticed a bizarre tremor in my right index finger, and then one day, when I was visiting a village where we had constructed some clean water wells, my voice ultimately failed me.

My Parkinson's diagnosis

Returning home to the USA, I went through six months of uncertainty, seeing first my GP, then a neurologist, and then a battery of tests that included an MRI, a DAT scan, and an EEG. They confirmed what I had suspected long before. I had P.D. At the time of my diagnosis, I was serving as a resident chaplain at Hoag Presbyterian Memorial Hospital in Newport Beach, CA. The diagnosis hit me philosophically more than it did emotionally. "Was this a karmic payback for the sins of my youth while I was in Vietnam? Did I deserve this?" I wondered. Whatever the cause of my affliction, one thing was clear: what I once saw as an abstract, I now had it in my body.

Chaplains have a maxim repeated in training and practice: "You will face your fears in the rounds." In the rounds, I learned to face the fear of what a future with Parkinson's might hold for me. It was almost shocking to see the number of people diagnosed with Parkinson's disease in the wards. Before each patient's visit, I read their chart to prepare for the visit. Some patients were very upbeat and kept a positive outlook despite the diagnosis. While others appeared that they were entirely overcome by the disease. Without judgment, I entered the rooms with a kind of awe. On the one hand, I went in to minister peace. On the other hand, I was a kind of voyeur seeking a glimpse into my future. Now, seven years after my diagnosis, I am still vertical, which is something I am thankful for!