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PDF Launches Quality of Life Initiative

By Robin Elliott

It is late in 2007, and the state of Parkinson’s disease research and drug development remains uncertain. This is 10 years after predictions among high-level scientists and advocacy groups that the solution to Parkinson’s disease would soon be within our grasp. And despite an impressive increase in our un-derstanding of the basic processes of Parkinson’s disease, the number of new and promising treatments emerging from the research and development pipeline remains disappointing, and their effectiveness is mostly incremental.

At the same time, people living with Parkinson’s and their families have never been more active and effective — in working on federal policy, in individual states, with pharmaceutical companies and with the news media — in urging action and taking charge of their own future well-being.

This is the context of the Parkinson's Disease Foundation’s (PDF) new program known as the Quality of Life Initiative. An outgrowth of the very popular Creativity and Parkinson’s Exhibition at the 2006 World Parkinson Congress (WPC), the new initiative focuses on elements of lifestyle — such as exercise, diet and creative artistic and intellectual activity — in which people with Parkinson’s disease can supplement traditional medical regimens with self-initiated activities that can improve health and well-being.

The innovative initiative draws on several different sources of energy and knowledge. One is growing agreement among scientists that such activities actually work (see the box on this page on a recent PDF-sponsored scientific seminar on the value of exercise). This trend in turn has made it more likely that physicians will address quality of life issues when speaking with their patients.

Another factor is the energy and take-charge attitude that is increasingly evident among people living with Parkinson’s disease. This was seen in the remarkable profiles accompanying artwork submitted to the WPC and to PDF’s ongoing PDCreativity website, many of which were created by people who began painting, writing and composing after their PD diagnosis (view their works at www.pdcreativity.org).

And a third is the growing availability of community resources — from therapist-led exercise programs (for example, PDF’s seated exercise video, Motivating Moves for People with Parkinson’s), to local programs of creative activity designed for people with Parkinson’s disease and other degenerative disorders.

PDF’s new initiative will have two principal objectives. One is scientific: helping to advance our understanding of how “quality of life” initiatives can help people with Parkinson’s lead better lives. Activities will include our continuing support of the products of recent roundtables on the science of exercise (see article on this page) and the phenomenon of impulse control disorders (e.g., compulsive gambling, sex and shopping) that have been found to be associated with Parkinson’s and its medications.

The other major objective of the initiative will be educational: gathering information about the availability of community resources (nationally and internationally) provided by Parkinson’s and other organizations and transmitting this information to interested people through publications and the web.

The program will be funded entirely by friends of PDF and supplemented by the organization’s general funds.

To find out more about the initiative, call (800) 457-6676 or email us at info@pdf.org. We look forward to keeping you informed on the Parkinson's Disease Foundation’s exciting foray into giving quality of life issues the serious attention that they deserve.

Robin Elliott is Executive Director of the Parkinson's Disease Foundation.