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Blog Archive for January 2010

Are you a Parkinson's Patient?

Think before you answer this question. It is not as simple as it appears.

By definition, a patient is a person receiving medical treatment. To be a patient therefore means to be actively engaged by the medical system in some way. But when, if ever, does a person with a chronic illness like PD stop being engaged by the medical system? That is, when does someone stop being a Parkinson's patient?

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Dopamine Agonist Therapy? Don't Overlook Computer Compulsion

Much has been written about the possibility of compulsive behavior in some young people taking dopamine agonists. Gambling and hypersexuality have gotten a lot of press because they are glitzy and attention-grabbing. A person in the grip of compulsive gambling can rapidly bring financial ruin to the family. Hypersexual behavior can lead to unrelenting demands of a partner, affairs, unprotected encounters and compulsive indulgence in pornography.

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Love, Other Drugs and Young Onset Parkinson's

Edward Zwick's latest comedy, "Love and Other Drugs", premieres this week amid great fanfare. I have not seen the film as of this writing so I don't know how it treats Parkinson's disease as it is experienced by a young adult. Depending upon the film's accuracy, plausibility, and general approach to the subject of PD, I will be blogging my thoughts in the weeks to come, though.

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Cooling Down the Simmering Anxiety Pot

In my last blog, I discussed how common anxiety is with PD. However, pointing out that both the person with the disease and the people who love them can become anxious acknowledges but does not guide anyone about what to do about the situation. In keeping with my promise to discuss solutions, I will lay out a broad plan of attack for dealing with anxiety.

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Anxious About PD

I recently had the honor and pleasure of speaking at the 2010 Southeastern Parkinson Disease Conference & Young Onset Parkinson's Conference in Atlanta jointly sponsored by the Northwest Georgia Parkinson Disease Association, APDA and NPF. My topic was anxiety, a condition that complicates Parkinson disease for upwards of 3 out of 4 individuals with the diagnosis. Based on the follow-up questions and casual discussions between sessions, it was clear that a discussion on this topic is well-placed and not just for the individual with the neurological diagnosis.

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An Exercise in Accommodation

In my last blog, I discussed the need to accommodate the demands of Parkinson's by employing the metaphor of learning to sail a body of water one cannot control. It is natural to ask why accommodation is necessary. After all, the first few years after diagnosis are often marked by a milder presentation of the disease that allows symptoms to be ignored. Most people would find little reason to accommodate a condition it is easier to just not think about.

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Simple, Not Easy

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,...

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What Does Support Look Like?

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?

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Changing Your Point of View

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.

Regards,

Dr. Paul
Paul Short, PhD

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A Time to Have Parkinson's

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.

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About the Author

Paul Short, PhD

Dr. Paul Short, The Parkinson's Coach, provides Internet-based coaching to individuals and famlies challenged by Parkinson's disease and helps them develop personalized plans for coping with the disease.