In the summer of 2014, at the age of 66, it came as a shock that I was diagnosed with Parkinson’s disease (PD), a progressive neurological disorder with no cure. One million Americans live with Parkinson’s, and I believe many more have it and don’t know it.
PD causes motor symptoms like tremor and stiffness and many non-motor problems like sleep disturbance, anxiety, constipation, pain, depression, loss of focus and a myriad of other woes. And it almost always gets worse over time.
I had experienced a number of these signs and symptoms for more than 20 years, but none of my caregivers pieced it together. I was in reasonably good shape, ran several marathons, including Boston twice, so I wrote off the stiffness in my legs as not doing enough stretching. I told myself rest was part of getting older. My daughter, a nurse, noticed the tremor, and made me get it checked out.
Before my diagnosis, I was really slowing down. I had shifted from an active retirement as environmental activist, tree steward, and gardener, with lots of traveling, hiking and exercise, to a couch potato. By the summer of my diagnosis, I had slowed down like my battery needed charging, which it did. I was spending hours just sitting. My wife has since told me that she was very worried about the changes in my behavior.
I was blessed to be referred to a prominent Movement Disorder Neurologist, who put me through a battery of tests, including six weeks on a dopaminergic medication to counteract the loss of my dopamine-producing neurons. At that point, I was in no condition to judge whether this helped or not. Thankfully, my wonderful wife Carolyn, was a better observer. She clearly saw that I had more energy, focus, and mental clarity, as well as was more active, so she told the doctor that we had a significant improvement.
I knew of the VA benefits for disabled veterans, having coordinated my Dad’s care. He was an army officer, serving from WWII, thru Vietnam. I also served in Vietnam, in the 25th Infantry. It turns out that the neurotoxin Agent Orange, which we both were exposed to in Vietnam, is a presumptive cause of PD for veterans who served there. I found out that I was eligible for VA benefits.
I went to the VA Medical Center in Richmond, VA, to a specialty center for PD, called the PADRECC, which stands for the Parkinson’s Disease Research, Education, and Care Center. Working with the PADRECC changed the trajectory of my life. I immediately felt that I was welcomed, experienced the comradeship of fellow vets, and received personalized care. I felt that these practitioners cared about me as a person and not just another patient they needed to work on.
I was lucky to meet Lynn, a nurse educator. She gave me lots of reading material to learn what PD is, and what I could do for myself. She enrolled me and Carolyn in a nine-month class, PD Self, which included workshops by PD experts and social support. She showed me how to get involved as an advocate ― to go on the offensive!
Additionally, I benefited from a clinic designed for veterans with chronic pain. They have practitioners who employ non-traditional and holistic approaches such as acupuncture, biofeedback, meditation, Tai Chi and even music therapy (e.g. drumming). This has made a huge difference to me in managing anxiety, pain and insomnia.
I have been in about 15 clinical trials, to help find new treatments for this awful disease. It gives me a real shot in the arm when I show up and meet the front-line researchers who are racing to find a cure or at least a treatment to slow the progression.
All the efforts, exercise, trials, nutrition, meditation, attitude, have paid off. I am active and feel much better than before I was diagnosed. My life is going well.
I now have one more reason to help find a cure. My two daughters’ mother has just been diagnosed with PD. We also know that the daughters’ grandmother had Lewy Body Dementia, a form of PD. Each of my daughters has exhibited a few of the Prodromal symptoms of PD, so I want to find this cure more than ever now.
My wife Carolyn and I have a new focus in our lives. She is a retired systems engineer who went back to school and is now a nutritionist. We speak to newly diagnosed patients and support groups on self-care that we have learned. I especially enjoy working with newly diagnosed vets and helping them understand what benefits are available to them.
Carolyn and I are traveling a lot. We went to the World Parkinson Congress in Kyoto, Japan, last summer and met some amazing people, all united with the purpose of overcoming PD. I recently joined a Sierra Club seven-day hike in the Cascade Mountains in Washington state, a demanding and exhilarating experience.
I also advocate for research funding and serve on the Army’s Medical Research Agency Parkinson’s Program. I help review grant applications as a “lay consumer” to represent the PD community.
I am grateful to my support team: my wife and care partner, my daughters (who, as nurses, are learning about PD to help their patients), the VA providers, my private doctors and fellow vets and my support groups.
There is an old Native American saying, “If you want to go fast, go alone. If you want to go long, go with your tribe.” My advice to fellow persons with Parkinson’s is to find your tribe. Your tribe should give you and your partner medicine, counseling and social support. We need all three.
So, I’ve adopted as my motto the army code words “Charlie Mike,” Continue the Mission.