When I was offered a job to help start a Parkinson’s Disease Center in 1981, I knew I loved the concept, but also knew nothing about Parkinson’s disease.  My masters’ in community health education would serve me well in the job aspects of outreach, forming support groups, working with community advocates, and providing educational programs, but what about the knowledge I needed on the complexities of Parkinson’s disease?

I searched my textbooks and notes from nursing school, hoping to get a start on my learning before the first day on the new job.  I found one sentence in my notes, and no content on PD in my nursing texts.   That one sentence was simply “levodopa, new drug, watch for it!”  As there was no nursing information on Parkinson’s disease, I devoured a book for people with Parkinon’s (PwPs) written by Roger Duvoisin, MD.

Fast forward just a few decades and I can say I have had the best career a nurse could have!  I have enjoyed working with and learning from my mentors, a large segment of them being the PwPs and caregivers.  One of the very important things PwPs have taught me is that there is still a lack of knowledge among nurses in caring for Parkinson’s disease, as evidenced by the distressing stories so many PwPs share, especially after a hospitalization.  I attended the first WPC in Washington, DC, (2006) and along with other nurses in the PD specialty, shared concerns about the care of our patients when they were hospitalized, and the role of nursing.  Shortly thereafter, a nursing text on Parkinson’s disease was published, “Comprehensive Nursing Care for Parkinson’s Disease” a collaborative effort of several PD nurses, and organized and edited by colleague Lisette B. Perry and myself.

In 2007-8 a colleague and I did a study on the state of nursing education on PD in undergraduate training and it proved to be as dire as my one sentence on PD learned in my era. The study also identified that nursing professors did not feel they had the knowledge or competence to teach content on PD.  With support financially and programmatically from the Edmond J. Safra Foundation, an educational program was developed to educate nursing professors, so in turn, they could educate nursing students on PD.  Beginning with a pilot program in 2009, the program has now educated 225 nursing professors, who in turn, educate an estimated 20,000 nursing students per year.  Considering there are over a million nurses in the US, we still have work ahead of us!  The success of the program lies in the excellent host sites, all of them internationally known Parkinson’s Disease and Movement Disorder Centers in the USA.  The host site nurse coordinators and local faculty at these centers work very hard to make the experience for our scholars wonderful and program evaluations support this.  The program began a collaboration with the Parkinson’s Foundation in 2014 and the official name of the program is now the “Edmond J. Safra Visiting Nurse Faculty Program at the Parkinson’s Foundation”, or “VNF” for short.  The program is offered 6-8 times yearly around the USA.  Scholars of the program are influencing nurses’ understanding of PD locally, nationally and internationally through teaching, lecturing, publishing, and involvement in professional organizations.  Because of this unique "train-the- trainer" approach PD related questions were included on the NCLEX (licensure exam for registered nurses), a PD case study is available on QSEN (Quality and Safety in Nursing Education) for all schools to access, and a program for nurse interns entering the workforce includes a PD module. This and many more projects completed by the scholars of VNF are making information on PD and nursing care available where it didn't exist before.  Additionally,  scholars are publishing in nursing journals and writing new chapters on PD in standard nursing texts such as Joanna Rowe Kaakinen’s, “Family Health Care Nursing: Theory, Practice and Research”.

One of the most rewarding professional moments for me personally was the World Parkinson Congress in 2016.  Twenty-five nursing scholars of the “VNF” attended this wonderful program, presenting 23 posters and 2 oral presentations.  The scholars shared their amazing work being done in their nursing schools, their communities and with their professional colleagues in promoting knowledge of care of people with Parkinson’s and families. Scholars also presented PD nursing research projects.  I think I can speak for them collectively by saying that the WPC is the most exciting conference we as nurses interested in PD attend.  To be among the bench scientists, researchers, PwPs, caregivers, health care providers, advocacy groups and industry all working together on a common problem creates an atmosphere of energy unlike any other conference.  To view the patient submitted videos, listen to the Treble Clef Singers, and see the exercise groups in action helps us all to recommit our passion to improve the care of those with PD, and propels us to continue to work with additional nurses to educate them on the complexities of PD.

The scholars of the Edmond J. Safra Visiting Nurse Faculty Program at the Parkinson’s Foundation are excitedly looking forward to WPC 2019.  We hope to see you there and bring even more nurses with us!

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Gwyn M. Vernon, MSN, RN, CRNP presented at the WPC 2006 in Washington, DC, and the WPC 2016 in Portland, Oregon and presented posters at the WPC 2010 in Glasgow, Scotland and 2013 in Montreal, Canada She is currently the National Director of The Edmond J. Safra Visiting Nurse faculty Program at the Parkinson’s Foundation and is one of the founding members of the Parkinson’s Disease and Movement Disorders Center at the University of PA at the Pennsylvania Hospital.

Ideas and opinions expressed in this post reflect that of the authors solely. They do not reflect the opinions or positions of the World Parkinson Coalition®