"Through Our Eyes": Persons with PD Information Service

For too long, the national and local organizations representing the needs of the PD community, while providing us with vital services, have, with only a few exceptions, left the "PD Voice" and perspective out of the mix while designing and presenting publicly attended programs, forums and conferences about our needs. We need to insist on the motto of the disability advocacy community, "Nothing about us without us," and ask for our presence on panels at any public teaching event about PD, even if it is only two members of the advocacy comunity, and in the academic teaching classroms where health practitioners are learning about treating us. We strongly believe that we need to be invited to speak, even if only once, to bring the human element and presence of the actual person experiencing a disease, to every class of practitioners who are being trained to work with us: movement disorder physicians, clinical researchers, occupational therapists, physical therapists, nurse practitioners, physician's assistants, speech therapists, psychiatrists, physiatrists, chiropracters, and neurologists.

This has been already implemented by NPF's APTT program (Allied Professionals Team Training," whereby three-day teaching conferences are held across the country to train practitioners, always with several panels of persons with PD, and another of caregivers. There are forward-thinking doctors in several states who have begun to invite patients to speak to clinical research or medical students, but this is rare. We applaud them. One head of a Movement Disorder Center in New York City uses a series of one of his patient's poems about her Parkinson's to teach his movement disorder students about the disease, feeling, in his own words, that "the language of poetry is such more eloquent and poignant a teaching tool than a textbook." Indeed, at the PDF.org website, under "Living with Parkinson's" one can find a wealth of writing and art by PD folks living with the disease in a "PDCreativity Gallery." Any teaching physician can include this in required teaching materials.

The PWP Speakers’ Bureau has been designed with the goal of offering sensitivity and awareness training to health care professionals working with the Parkinson’s population, through a speakers’ panel comprised of diverse members of the health care professions who themselves live with the disease. We will attempt to help our listeners and their students to better understand the frustrating and extraordinarily mercurial motor and non-motor issues we face, the uniqueness of each patient’s presentation of this disease, and the lesser-known cognitive challenges we struggle with.

During our presentation, we will each, on the panel, present brief glimpses of the manifestations of PD through the unique windows of our daily lives, including a question and answer period. We will offer verbal and written suggestions about how to address issues specific to this disease through more efficient patient interviews, Parkinson’s-specific questionnaires to use during patient visits, and interventions that incorporate a deeper understanding of our frailties, while reinforcing our strengths. We will also distribute a packet of poems written by those with PD, about their disease. These poems are already being used to train health care practitioners in this field. In so doing, we hope to be able to offer a distilled, insider’s glimpse of issues pertinent to our illness that would not be accessible through written materials or textbooks.