Parkinson's Disease - incurable, chronic, and progressive. The "What Ifs" can be a lot to worry about - body failure, job loss, financial ruin, vivorce, dying in a nursing home. Looking like one of those people in the neurologist's waiting room,...
The Summer 2010 issue of the Young Parkinson's Newsletter begins a new series on networking with an article about finding a support group. The article focuses on the mechanics of searching for and evaluating a support group to determine if it is a good fit. However, the newsletter format is too brief to address a more fundamental question: What is support supposed to look like?
I want to begin my new blog by thanking Julie Sacks and the APDA for inviting me to participate in this forum. Those of you who have followed my blog on the www.pdfso.org and www.yourparkinsonsfamily.com Web sites are aware that it has never been my intention to redefine the disease itself. Rather, my hope has been to redefine how we talk about, respond to, and ultimately live with Parkinson's disease (PD).
"No man is an island, entire of itself" the poet John Donne wrote. His reflection on our interdependence with our fellow humans implies that each of our lives is embedded in a larger context. The most immediate context is life with our families. Family may have a literal definition: spouse and children, partner, father-mother, or siblings. It may also exist in a more metaphorical sense as any group of loved ones, people who care about us and are concerned about our welfare. These can include a circle of friends, neighbors, members of a faith community, others who have PD early in life. It is impossible for a person with PD to live independently from some relational unit, however one defines that entity.
I began my original blog as a resource for the entire family, with a special emphasis on the members of the family who love someone with PD. Much of the information I felt I needed to help my clients simply wasn't provided in the available books or Web sites about the disease. I began to build upon my clinical experience, review of the research literature, conversations with colleagues in the field, and my interactions with people struggling to manage the disease that was so deeply embedded in their lives. My goal now is to provide the same type of information to individuals who acquire PD early in the course of their life.
There is no question in my mind that a sense of belonging to something larger than oneself is critical to maintaining the best quality of life possible in the face of the disease. For individuals with PD, particularly young onset Parkinson's disease, a sense of belonging is often missing. When I designed my original Web site, I searched long and hard for a picture or design that was inviting and homey. My goal was to invite people to visit as if I were welcoming them into my home. I finally settled for a fireplace with a chair drawn close to the warmth of the flames. I liked the image of a hearth and fire because I felt it brought forth a sense of belonging.
This blog will attempt to lay out a bottom-up approach for looking at PD that contrasts and complements the current top-down system that draws so heavily from the medical community. This is not a new way of looking at PD; rather, it is an effort to help everyone living with the disease pick up their chairs and put them down in a place that allows them to find a different perspective for living with the disease. I invite everyone to pick up their chair and join me in this endeavor.
Paul Short, PhD
When a neurologist makes a diagnosis of PD, nothing truly changes from the moment the patient and family first came to the office, except confirmation of the disease. But I have heard the moment described as the emotional equivalent of being hit by the entire defensive line of a pro football team. It is an understatement to say a family is left reeling and confused. The subsequent sense of disorientation endures for weeks or months. In fact, my clinical experience leads me to wonder if the disorientation from the blow doesn't take several years to subside.