Leon is the therapist who leads the Parkinson's disease support group meetings I've been attending since shortly after my diagnosis in 2009. He is a talented group therapist, but his effectiveness is greatly enhanced because we know that Leon -- who looks to be in excellent health -- was diagnosed with PD in 1987 when he was age 43. That's almost 30 years ago.
Two years ago, I reported on an interview I had with Leon. But here we are rewarded with Leon's own open and honest sharing of his struggles to deal with both his Parkinson's and his over-protective parents. Leon's reflections were occasioned by the death earlier this year of his mother at age 96.
An important early-life experience exemplifies and shaped my response to health concerns. It was my mother’s extreme reaction (over-emotional) to a baseball accident when I was eight years old. In my mind, the trauma of the accident will always be with me, both physically and psychologically. From it (besides losing two front teeth), I learned to hide, deny and minimize any and all injuries and sickness in order to counteract my mother’s anticipated fear and reactions.
In general, my family was very health conscious. My father, a physical education teacher, was an advocate (before it was popular) of natural food diets, and he strongly reinforced my athletic pursuits and healthy living. My mother was an excellent, health-conscious cook.
After college, intensely striving toward independence, I left home, moved to DC, got married and divorced, finished graduate school and began to establish my professional career. There were many hurdles to face along the way, for which I sought psychotherapy. Among them were authority issues and the Vietnam war, and psychosocial concerns related to marriage failure and depression.
I was ambivalent about entry into psychotherapy as a patient, although it was consistent with my preparation and desire to be a psychotherapist. Also, it provided my parents reassurance that I was taking responsibility for my struggles and receiving help. On the other hand, it exposed vulnerabilities that were embarrassing and led me to think my parents were right to worry. There was something wrong with me. I wasn’t able to be independent. Ultimately, psychotherapy was very helpful.
My symptoms of Parkinson’s began early (mid-thirties) and have extended through most of my adult life (age 71). Initially, when diagnosed with “essential tremor,” I sought various kinds of alternative care, including acupuncture, biofeedback, diet change, meditation, yoga and chanting. Finally, at age 43, in 1987, I was diagnosed with Parkinson’s disease.
This was not really a surprise because some of my symptoms matched those that I had read about in Parkinson’s literature. However, a number of neurologists were puzzled due to my young age. Since most of the alternative care treatments were ineffective, I was relieved when I began levodopa therapy and was able to resume my usual schedule of activities and was fortunate to be able to continue my work as a private practice therapist.
Twelve years later, my professional experience as a group psychotherapist and the diagnosis of Parkinson’s disease gained me entry into the Parkinson’s community. In 1999, I was hired by the Parkinson Foundation of the National Capital Area to initiate and lead support groups. This opportunity was fortunate and led to other achievements. Most notable was an academic publication about my work with Parkinson’s groups. ("Group Psychotherapy and Parkinson's Disease: When Therapist and Members Share the Diagnosis")
Over the years, my parents had mild to moderate health problems, yet each had been able to care for the other when needed. However, in the last few years, my mother had become more challenged with emergent health risks, needing hospitalization and rehabilitation services. Sadly, she passed away January 9th of this year at the age of 96. Today, my father is 98 years old and still living independently in the home in which I grew up in Rhode Island. There, he is supported by my sister's tenacious pursuit of health care service and extended family members as well as paid assistants who help maintain the household environment.
My parents have been pleased and proud of how well I've been doing despite the observable, inconsistent and intermittent symptoms of Parkinson’s. Now with my mother gone, I’m still striving to reassure her (in my mind) that I am okay as I grieve her loss, defend against family protective tendencies and maintain my independence.
These tendencies include their expressed worry about the uncertainties of my future. Questions arise about my retirement, ability to function and when I will return to live in Rhode Island. Admittedly, these concerns resonate within me as I confront them on a daily basis in my personal and work life.
In terms of my health care, I am a minimalist, I try to keep it as simple as possible. As I see it, I'm capable of evaluating (with help from professional and support resources), the realities of my health and determine the best choices of care.
At the same time, I understand the unpredictability that occurs with Parkinson’s and related health issues due to aging that continually need assessing. It is for this reason I wish to keep communication open and not cut off dialogue with my father, family and friends.
Living Life with Purpose and Passion
A group member, John Schappi who writes an excellent blog, "Aging and Parkinson's and Me," interviewed me in June 2014. He was interested in determining the secret of my being a high-functioning person with Parkinson's disease. In his blog, he refers to a New York Times blog post by Paula Span titled "Living on Purpose." She states, "Purpose reflects a commitment to broader life goals that help organize your day-to-day activities." Researchers have found that having a purpose in life is associated with satisfaction, happiness and better physical functioning.
Generally, other studies in health and wellness have found that purposeful people are less likely to develop disabilities and less likely to die.
According to my group member, he saw another factor beyond purpose that enhances my life........."passion." He continued, "All of our group members sense Leon's passion for helping people with Parkinson's." Also, John learned from the interview that I was passionate about singing, taking sight-singing classes, voice lessons and singing with several groups. In addition, he reported accurately that my skill as a group therapist seemed to come naturally while singing is more of a challenge, particularly for someone with Parkinson's. "But Leon seems to thrive on overcoming challenges."
Striving to overcome challenges—those imposed on me such as Parkinson’s disease, or those I choose, such as singing—do help motivate and drive me every day. However, being a professional group psychotherapist for more than 40 years also has given me a wealth of experience and substantial opportunities to contribute in a very meaningful way to the Parkinson's community. I believe these opportunities and the feedback I have received from many individuals about the value of the groups I lead in their lives has also contributed to making a difference in my health in a life-sustaining way.