January 18, 2012

Health, Parents, and Parkinson’s: Guest Post from Leon Paparella

Leon is the treasured moderator of my Parkinson's disease support group. He has a special talent for making sure everyone in the group is involved. He also keeps us focused on how we're feeling, so that our discussions don't simply become commentaries about pills and exercises. Leon has been dealing with PD since 1987, and his experience with the disease is invaluable to our group.

Leon's reflection below first appeared in the fall 2010 issue of the Parkinson's Update of the Parkinson's Foundation of the National Capital Area. I asked his permission to share it -- an interesting example of how mind-body connections play out in our lives.

Health, Parents, and Parkinson’s: A Historical Perspective
by Leon Paparella
In my nuclear Italian-American family, I am the youngest and only son, having an older sister (two and a half years). Throughout my childhood and early life I seemed to have been the focus of excessive concern and worry. Over-protectiveness would be an apt description of my parents’ response to my well-being. I resented this.

Historically, an important experience exemplifies and shaped my response to health concerns. It was my mother’s extreme reaction to a baseball accident when I was eight years old. In my mind, the trauma will always be with me. 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. He strongly reinforced my athletic pursuits and healthy living.

After college, I intensely strived toward independence: I left home, moved to Washington, DC, got married and divorced, finished graduate school, and began to establish my professional career. There were a number of hurdles to face along the way, for which I sought psychotherapy. Among them were authority issues and the Viet Nam war, 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. Was there something wrong with me? I wasn’t able to be independent (or dependent). Ultimately, psychotherapy was very helpful.

Symptoms of Parkinson’s disease occurred early for me (mid-thirties) and have extended through most of my adult life (age 65). 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 because of my young age. Since most of the alternative care treatments were ineffective, I was relieved when I began levadopa therapy and was able to resume my regular schedule of activities, and also 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’s Foundation of the National Capital Area to initiate and lead groups. The opportunity was fortunate and led to other achievements, the most notable among them being an academic publication about my work with Parkinson’s groups.

Today, both of my parents are 91 years of age and living independently in their home in Rhode Island. Each of them has had mild to moderate health problems over the years. Each has been able to care for the other when needed.

They are pleased and proud of how well I’m doing despite the symptoms of Parkinson’s. However, I’m still striving to reassure them and defend against their over-protective tendencies as I maintain my independence. These tendencies include their expressed worry about the uncertainty of my future. Admittedly, I am very sensitive to their observations and resistant to insistent recommendations about my health care.

Although I have not expressed anger openly or directly related to my struggle with Parkinson’s, I believe I hold within myself an attitude that strongly resists the effects of the progression of illness. Perhaps, it is my way to counter my parents’ over-protectiveness and the perception of others who may stereotype, misperceive or underestimate my abilities.

Giving credence to the connection between mind and body, I wonder to what extent my initial resistant attitude to parental care and determined independence has contributed to my inner strength (or fighting spirit) and helped me to become a high-functioning person with PD.

As I see it now, I’m capable of evaluating (with help from professionals and support resources) the realities of my health and life-style to determine the best choices of care. At the same time, I understand the ongoing unpredictability that occurs with health and illness that continually needs assessing. It is for this reason I wish to always keep open communication with my parents, family and friends.

1 comment:

Bartogirl said...

My husband is in-between stage 4 and 5 and we have been through a rough couple of weeks.A friend sent me an article about the benefits and as the both of you were diagnosed around the same age I thought it cannot hurt,I also found out he had been playing with his meds,in other words if he started out as havin a good day then no meds.He recently fell a couple of times and as I have an autoimmune disease called Antiphospholipid Antibody Syndrome/Giant C cell Ateritis polymyalgia I was wondering if you had found any research for that in connection with this spice.Does it take the place of the drugs that extend the shelf life of drugs such as sinemet?