April 7, 2014

Uncertainty, Parkinson's and the Support Group: Guest Post from Leon Paparella

Leon is the treasured moderator of my Parkinson's disease support group. He has a special talent for getting everyone in the group involved. He keeps us focused on how we're feeling, not on our our pills or pains. Leon has had PD since 1987, and his experience with the disease is invaluable to our group.

At our regular group meeting last Friday, Leon read the paper, below. I asked him if I could share it on this blog, and he kindly agreed.

An earlier paper of Leon's became a very popular guest post. In that piece, he asked an interesting question: Did his overprotective parents -- and his consequent struggle for independence -- contribute to his inner strength and "fighting spirit," thus making him a high-functioning person with PD through all these years?

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Uncertainty, Parkinson’s and the Group (2014)

--Leon R. Paparella, MSW, CGP

The subject of my last newsletter article was reaching a milestone of 650 sessions and the value of a long-term support group to face the challenges of Parkinson’s disease. This article takes a closer look at the issue of “uncertainty” and the psychosocial challenges with which PD sufferers contend through their journey.

“Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious ambiguity” --Gilda Radner

This quotation represents a reality for all people. In truth, the very nature of our human existence is forever in flux. Despite our efforts to find constancy, consistency and lasting security, the fact is we are part of a dynamic and ever-changing process. The challenge we confront daily is to live fully in the face of uncertainty, unpredictability and impermanence, knowing that one day we are going to die.

In addition, the challenge becomes palpable in a powerful way when diagnosed with a chronic condition, such as Parkinson’s. Confronted more sharply with the awareness that life is finite, the prospect of facing real and imagined “uncertain” limitations is daunting.

Parkinson’s disease is a complex, slowly progressive illness that includes a myriad of physical, psychological and social changes. It is diagnosed by observable symptoms such as tremor, stiffness, slowness and loss of balance. While the average age of onset is sixty years old, about 15 percent of people are diagnosed prior to age fifty. Although it is medically treatable and doesn’t change life expectancy, there is no cure for Parkinson’s disease.

Because there is no cure, once the diagnosis of Parkinson’s is established, it is a life-enduring experience. Most members of my long-term weekly groups are not newcomers to the various stressors characteristic of Parkinson’s, but have lived with the illness for many years. Although the shock of their initial diagnosis is past, members still contend on a daily basis with the uncertainties and vagaries of Parkinson’s, not knowing what the future holds for them.

The most prominent psychosocial concern described in groups is everyday functioning and the potential loss of personal effectiveness. Now, faced with the complexity of daily tasks, unexpected events, emergencies, transitions and travel can cause increased anxiety and overwhelming stress. This encompasses the ability to manage and maintain responsibilities with family, friends, employers and the public. Congruent with this concern are an increased sense of vulnerability, loss of confidence and a diminishing sense of personal vibrancy.

A support group has the potential to help alleviate the suffering of its members. It can protect, insulate and absorb individual feelings of anxiety, confusion and chaos. In the group, I try to keep my mind open to new possibilities of discovery and coping as I listen to members describe stressful events. I encourage members to identify and share with each other to broaden awareness of others’ struggles.

Ultimately, my effort as a facilitator is to strengthen the supportive capacity of the group and increase group members’ ability to accept and tolerate uncertainties and the reality of not knowing what fate will bring.

Despite this reality, the challenge to all of us in the Parkinson community is to care for our lives and the lives of others, with commitment, passion and the wisest judgment we can muster.

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