Let me begin this profile by sharing my personal mantra” Yes, I do have Parkinson’s disease, but it does not have me” and I am determined to not let this disease detract away from who I am as a person. I will turn 79 in October 2025, and I was officially diagnosed in 2015, but I am aware that I had numerous symptoms for a few years prior to that. I was born and raised in Woodstock, Ontario and lived and shared my early years with my parents and my elder brother, all of whom have predeceased me. I was ordained an Anglican Priest in 1977, being the first female graduate of Theology from Huron College (UWO) to be ordained in the Diocese of Huron. There is no question that my first years of ministry were that of a ‘pioneer’, breaking new ground in a male-dominated profession. After a number of years in Parish Ministry and after my certification as a Clinical Pastoral Education (CPE) Teaching Supervisor, my ministry focus turned to the Hospital setting. In 1988 I was hired by the Vancouver General Hospital (VGH) to establish a Department of Pastoral Care and develop an Intern and Residency CPE program. Since leaving VGH in 1995 and facing the cutbacks impacting Pastoral/Spiritual Care programs, I ended up teaching and supervising training programs in the USA and eventually retiring from the University of Iowa Hospitals and Clinics, where I worked as a Chaplain Educator for the last four years of my ministry.
I also trained as a Psychotherapist and reached Associate Teaching Supervisor in Pastoral Counselling. Prior to moving to the USA, I worked as a therapist in my own private practice as well as a Counselling Centre and completed one year of the Psychoanalytical Psychotherapy training program at the Toronto Psychoanalytic Society. Part of my training as a Teaching Supervisor as well as a Psychotherapist was to be in a therapeutic relationship as a client, where I was invited to explore my own strengths and growing edges. Working over 5 years with a psychoanalyst was certainly a challenging experience where one is opened-up to their own vulnerabilities and invited to explore their own defense mechanisms, resistances, power dynamics etc., which I believed helped me to come to a much deeper understanding of who I am as a person and what can possibly challenge my defense mechanisms. This deeper understanding of my personality has helped me to develop a stronger inner core, which in turn has assisted me in coping with the realities of living with Parkinson’s on a daily basis. Self-awareness, I believe, can be a real strength in dealing with Parkinson’s disease. As a Priest, my faith has been and continues to be a source of strength and courage as well as I continue my journey in life and face the realities of living alone and dealing with Parkinson’s.
Growing up as a child I loved the outdoors where I could discover new things each day by simply turning over stones and seeing what may crawl out from under it. Needless to say, I was a curious child and I still value my curiosity. I was also quite athletic, playing hockey, football, baseball, cricket (long before girls did) but my real love was to be in the water. Swimming became an integral part of my life as a child and youth, swimming on the local swim team, and this continues to this day as I am a Master’s Swimmer and I still compete at the local, Provincial and national level. I have been a member of the London Silver Dolphins for almost 30 years and deeply value all the relationships that I have developed with my team members and Master’s swimmers across Canada and other parts of the world.
Why I joined the PCAC:
In February 2024 I was invited to participate in the C-OPN, Western University Site research study because I had been diagnosed with Parkinson’s disease and had indicated an interest in future research studies. Since I became a PCAC member, I have struggled for some time trying to understand the role of the PCAC and its members. Initially I felt like I was ‘running after a fast train, trying to get on-board and then discovering I really didn’t know where the train was headed’. As I have continued to attend the monthly meetings, I have begun to realize that C-OPN is relatively new in its development as it continues to evolve. With the reality of some changes in my health and work life over this past year, I have not been able to give the attention I felt I needed to discern my role on the PCAC. Having now completed my work contract, I do hope to explore more thoroughly what my role may be, especially in terms of understanding and interfacing with the Parkinson Society Southwestern Ontario.
What does C-OPN as an organization mean to me?
As a person living with Parkinson’s and having participated in the Michael J. Fox Foundation ‘Fox Insight’ study for a couple of years, I have gained a fuller understanding of the disease and its complexities. Also having worked in health care facilities in the USA for a number of years, I do appreciate the financial differences between Canada and the USA especially in terms of support for research. Having identified this and having now had some initial exposure to the work of C-OPN here in Canada, I feel it is incredibly important that C-OPN be supported as it evolves as Canada’s central arm in terms of Parkinson’s research.
What can I contribute to this network and especially to this PCAC?
As indicated above, I am still in the early stages of trying to understand the role and work of C-OPN and the PCAC. I will continue to attend the meetings of PCAC and initiate more contact with its members to gain further understanding of how they perceive their role and work as a PCAC member. As I have come to recognize some differences in how the various regions/provinces work and connect with C-OPN, I will seek to discern what may be most helpful in terms of building working relationships within the geographical area that I live within. As the Parkinson’s Society Southwestern Ontario (PSSO) has four regions that it covers it will be important for me to connect with the CEO initially to gain an understanding of how PSSO functions and how I may play a role as a member of the PCAC. I am also interested in connecting with the four region’s Community Engagement Coordinators, especially in terms of exploring how the Parkinson’s patients in their areas may benefit from participating in C-OPN research. As I continue to discern my actual role as a member of PCAC, I would appreciate any possible feedback with regards to the suggestions I have identified above, especially if it is felt that they may not be appropriate steps for me to pursue.
Why I and you should participate in PD research:
In order for research to be credible it must seek to understand the ‘subject’ of its research and what better way for C-OPN to achieve this than to involve persons actually living daily with Parkinson’s disease. As one who lives this experience and still has an ability to communicate fairly readily what that means day to day, I feel it is important to share what limited insights I may have as a way of broadening an overall understanding of the disease. I also believe, I have a role in helping others living with Parkinson’s to share their experience as well, thereby broadening an understanding of the ‘lived experience’. As a Master’s swimmer and having participated in numerous National Masters Swim Championships, where I swam in several events, including the 1500m and 800m freestyle races prior to my diagnosis, I decided that I wanted to ‘dedicate’ a 1500m swim to support the work of the Parkinson’s Society here in Southwestern Ontario. I was able to raise $4500 when I swam the 1500m free race a few years ago! It is my hope moving forward that I will discern more what my role may consist of and what initiatives I may want to engage in, especially in terms of connecting with the four regions of PSSO Community Engagement Co-ordinators.
