American Parkinson Disease Association, Washington Chapter

In the last several years a number of high profile people have raised the level of awareness surrounding Parkinson’s Disease (PD). Principal among them are Pope John Paul II, Muhammad Ali, The Reverend Billy Graham, Janet Reno and Michael J. Fox. Research of this disease that afflicts 1.5 million Americans with another 3 million displaying PD symptoms, is receiving major media focus because many in the medical community believe a cure or major breakthroughs are at hand.

Easing The Burden

The Washington Chapter of the American Parkinson Disease Association (APDA) is concentrating its efforts on the phrase “Easing the Burden” which makes up one half of the association mission. PD progresses differently among patients both in pace and intensity. As PD advances, patients need increasing care from spouses, family members and friends. Managing Parkinson’s – Straight Talk and Honest Hope (MPHH) has two major goals. The first is to promote candid information sharing among patients, their healthcare professionals and lay support providers. The second goal is to demonstrate the utility of user-friendly technology others can replicate for managing a variety of chronic diseases. With growing numbers of Early Onset Parkinson’s persons filling the "ranks," the need for honest, hopeful dialogue coupled to personal health maintenance strategies is becoming critical. Joining the Washington APDA Chapter in this enterprise are leaders from the Northwest Parkinson’s Foundation.

Compared with many other infirmities, there are not a great number of clinicians specializing in treatment of PD patients. This is particularly true in the less populated areas of rural and even suburban America. Managing the challenge of first diagnosis with its high levels of depression (50%) argues convincingly for outreach initiatives to bolster individual hope, coupled to what can be best described as a large pool of printed information about PD. However, what is missing is the personal hope - strengthening advice and "high touch" encouragement that can be shared with recently diagnosed patients and their families through a comprehensive digital video disc (DVD).

Information Age Technology

The Washington APDA Chapter is working with vm:creative of Seattle, Washington to produce such a DVD that will provide personal accounts of experiences, common feelings that affect most Parkinsonians and successful initiatives that have improved patients' quality of life. This aspect of can best be described as a one-way intervention and support group meeting. Because of its audiovisual capability, families and close friends can share the DVD viewing experience together in a more meaningful way. In most cases this can be in the supportive environment of their own homes.

There is strong conviction among the MPHH group that leading edge DVD communications technology should be harnessed to carry a message of honest hope to all those touched by PD. A number of the “team” have shared their confusion and sense of isolation following diagnosis. Even though there are support groups and resource centers available, few want to start off by going public as there are a number of issues to be faced, not the least of which is "telling the boss." With a FAQ approach, this product can help tens of thousands touched by PD. In its final form the DVD will contain links to a wide range of Internet sites and sources of information. The immediate goal is to include multiple types of information into one single and easily operated tool. At some future date down loading from a maintained web site will be possible.

Production and Distribution

What is envisioned is the sharing of the DVDs with neurologists, internists, general practitioners or anyone related to the diagnosis and treatment of PD. The American Parkinson’s Disease Association has over 60 Information and Resource Centers which are available to the 50,000 new patients annually They can be the distribution paths to many thousands of these newly diagnosed patients.

STPD is copyright protected, but plans are in place to allow for copies to be made so long as the copying organization is a 501c3 charity recognized by the Internal Revenue Service, that MPHH is copied in its entirety, is not sold for profit, and is not copied from CD’s, or audio video tapes because of the loss of document quality resulting from use of such secondary recordings.

Ecumenical Spirit

Joining the APDA in this DVD production effort will be selected Parkinson’s persons, their spouses and families, representatives from the Northwest Parkinson’s Foundation, neurology faculty from the University of Washington Medical Center and Oxford University, healthcare providers and other appropriate contributors. Dr. C. Everett Koop, Former Surgeon General of The US Public Health Service has dedicated his personal support for this project by delivering recorded keynote remarks on campus at Dartmouth University.

To professionals in medicine and the pharmaceutical industry, the necessary time in bringing a new product to market can easily be a decade. A decade to a Parkinson’s patient might well be life ending. With HOPE as the underlying goal, Managing Parkinson’s – Straight Talk and Honest Hope has a positive mission that may have far reaching benefits not yet recognized.