Jackie Christensen: Persons with Parkinsons Have a Voice

On June 2nd, 2009, a published writer and advocate with Parkinson's, Jackie Christensen, was privileged to see a piece she'd written, entitled, "I Can Speak for Myself If You'll Let Me Do So," published in the Washinton Post.

Applause was heard in all corners of the country as news of the article was forwarded on computers through e-mail, and photocopies were passed out at support groups and exercise classes. Why? For too long, invaluable as their contributions to our PD community have been, the national PD organizations, along with teaching seminars about Parkinson's sponsored by teaching hospitals across the country, have made the mistake of excluding persons with the greatest expertise on living with a disease-the patients with Parkinsons-- from panels at conferences, web forums, and seminars teaching patients, practitioners and the public about this disease. There are innumerable PD Centers serving the PD community across the country without patients on their governing boards, or even in a formal advisory capacity. The Parkinsons Disease Foundation, to its credit, does have a "Patient Advisory Committee," but does not include any of those highly experienced advocates from that committee on presenter-panels in its otherwise invaluable educational forums.

In the Disability Advocacy community, there is a motto, "Nothing About Us Without Us." Many of us advocates with PD believe fervently in this premise. Members of the PD community include a population with untold numbers of people with "early-onset Parkinson's," many of whom were diagnosed in the prime of their lives and careers. Crucial to understand is the truth that many of us patients live for a long time with an illness that does not incapacitate our intelligence, creativity, or capacity to speak with wisdom and personal perspective about our illness to audiences of health care practitioners and fellow patients about our disease. And yet, time and time again, we attend seminars and teaching events where nary a person with PD is present on any dais, on the panels speaking with expertise on our disease; panels where our own observstions from the audience during Q&A sessions are no less astute or invaluable than those we have heard from the podium, and often complement the presentations.

There is a growing awareness among a few doctors and health practitioners across the country, that invitations to speakers with PD to address their teaching seminars have been met with enthusiasm, appreciation and sometimes tears, by students and researchers training to serve our community. Students at NYU's post-graduate clinical research program reported to their professors that when two persons with PD co-taught one of their classes, thereby humanizing their learning experience, it was, as many reported to the two professors, "the best class they had ever attended." They told one professor, (also the head of NYU's Movement Disorders Program), that they felt newly inspired to tackle research towards a cure for PD.


The "National Parkinsons Foundation" provides an excellent model for this approach. One of their programs travels around the country with "Allied Professionals Team Trainings"(APTT,) a training involving a 3-day conference with panels which always include at least two led by patients, and another with caregivers. We at Alpha propose that such a model can be replicated across the country in a fast-track mode through "Speakers Bureau" panels consisting of PWP's, (persons with Parkinson's.) These speakers can, in theory, be invite to speak to students training to be health practitioners serving our community just once per semester. This has already begun in NY and Los Angeles, as well as in Pennsylvania.

Similar goals can be accomplished through including writing by persons with Parkinsons as required reading in these same classes. This same doctor in New York City who heads the NYU Movement Disorder Center, uses one of his PD patient's poems about her disease to teach his training residents, stating that "no textbook can match the eloquence or poignancy of a patient's voice through poetry." Indeed, on the website of PDF.org, under "Living with Parkinson's," one can spend days roaming through the PD experience through the lens of artists with PD, where an entire juried gallery of art and music and writings exists to enhance the bibliography of any interested professor of Movement Disorders.

In summary, there is simply no reason NOT to invite the patient perspective to the table of any event concerning the PD population. The voice of those of us living with PD who are, through life experience or career, comfortable with public speaking, needs representation on any and all panels at conferences which address our treatment, as well as belonging inside of academic classrooms and teaching seminars where health care professionals are in training to treat us. Even if for only one visit per academic semester, the students interested in our treatment and care can only benefit from the opportunity to hear from us, and to ask us questions. It has been done successfully, and when it is done, it consistently serves to enhance and deepen the teaching and learning experience.

The Parkinson's "Through Our Voice" Speaker's 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 Parkinson's community, some of them advocates and/or health care professionals, and all whom 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 have available an evolving packet of poems written by those with PD, about their disease. Some of these poems are already being used to train health care practitioners in this field. In providing this written material, 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.

Attached to this site is a more detailed hand-out about the lesser-known symptoms of Parkinson's.

For contact info on speaker's panels, please contact
Leonore Gordon, LCSW
leonore1234@aol.com

Web Site for Creativity Gallery: http://www.pdf.org/en/creativity