Creating a Virtuous Cycle of PwP Support
All three of us – Bill, Judith and Alison – remember vividly our first responses to our Parkinson’s diagnosis, as “shocked and petrified patients”. And 15 years, 7 years and 8 years respectively further on, all three of us are now, in our various ways, “confident, engaged and empowered people”, working in partnership with our health professionals and taking shared responsibility for our own wellbeing.
How did we, and how do other PwP, make this journey, from being PEOPLE to being PATIENTS and then back to being PEOPLE again? What makes the difference?
We explored this, through observation, through feedback from other members of the Edinburgh branch of Parkinson UK (Scotland) and through our own lived experience. The findings, set out in our WPC 2019 poster “From impairment to empowerment”, show the power of the community to foster, to nurture and support, its members’ personal growth.
We identified four distinct stages in the transition; at each of the stages PwP were supported by other PwP. In parallel, our carers had similar experiences. As PwP grew in knowledge, confidence and trust, they moved from being supported by other PwP to, in their turn, supporting others. The rabbits in the headlights became the guiding lights, living with self-authority, acceptance of the gifts as well as the down-sides of PD, and an empathy for others.
We have moved from a ‘learned helplessness’ of total reliance on health professionals to partnerships with them; from ignorance to knowledge about Parkinson’s; from emotional negativity to positive attitudes; from passivity and apathy to activity and oomph; and have opened up, moving from isolation to community involvement.
Since WPC 2019 we have seen just how well this model works in practice. In February, just before lockdown, we revisited members’ experience, asking them: “What does the Branch mean to you?”
One care partner summed it up beautifully when she said: “Friendship from a wonderful group of people, useful source of information, support for each other, interesting talks accompanied by tea, coffee and biscuits.” Others talked about the Branch as “a most valuable asset for all of us with PD [...] We get support from each other.” And others mentioned the friendship, information and support, the “sense of community” and how being involved as a volunteer was “hard work, but enjoyable”. Over half the replies emphasised the importance of connection with people, particularly in shared understanding, belonging, feeling normal, being able to share experiences and tackle difficult subjects, like death.
The present Covid-19 crisis has provided 'proof of concept' of our work to date in fostering the Edinburgh Parkinson’s community. With our members isolated due to the present lockdown it has been an easy task for PwP to encompass technologies such as. Zoom, Skype and FaceTime to keep the continuity of our activities by providing exercise and meeting space on-line. The Parkinson community is so well established that people have taken readily to exercise sessions such as Pilates and Yoga being offered on-line; and they have also embraced the Quality of Life group meetings to the point that the members wish in the present circumstances to have two meetings a month on-line rather than the usual one.
We are now looking at how the model can be more widely applied, extending our work beyond Edinburgh. Scotland, with its many isolated rural inhabitants, has particular challenges in building and maintaining the face-to-face Parkinson’s community we set out in our poster, but the experience of lockdown has opened up new possibilities as we see how well PwP, their families and friends are embracing the technologies. We are discussing a potential research collaboration with Julie Jones, Parkinson’s UK Clinical Academic Fellow at Robert Gordon University, Aberdeen, including writing up our work for publication. Together we have the opportunity to identify the most useful mechanisms of community support and how they can be replicated in different circumstances.
Finally, the World Parkinson Congress functions as a huge international equivalent of our four-stage model. The delegates – PwP, carers, health professionals and researchers – support and mentor each other. Each delegate can be at a different stage of the model in different contexts: a PwP can be at Stage 4 in their PD journey and support other PwP, while being at Stage 2 when learning about the latest research. At the same time a researcher can be at Stage 1 or 2 in finding out about the lived experience of Parkinson’s, and the WPC offers a unique chance to talk to PwP and move up to Stages 3 or 4 in knowledge and openness.
The conversations and mentoring continue well beyond the length of the Congress. We are still in contact with people met in 2016 at Portland, as well as with delegates who were at Kyoto. Looking at the phenomenon that is WPC, we would relish the chance to analyse its success in terms of our Four Stage model – another WPC conversation!
A Parkinson’s diagnosis can, in a split second, change a person from a fully competent adult to a dependent patient. Our work looks – and continues to look – and how that process can be reshaped; how the PwP can recover and strengthen his or her sense of themselves as a fully functioning, life-enjoying and enhancing, person. And how the Parkinson’s community, in busy city or wild isolated countryside or across continents, face-to-face or virtually, supports the development and flourishing of all its many members.
Dr Alison Williams, Judith Shepherd and Bill Wright are all members of Edinburgh Branch of Parkinson's UK.
Dr Alison Williams, Honorary Professor, Centre for Person-Centred Practice Research, Queen Margaret University Edinburgh
The authors welcome ongoing discussion and can be contacted at alisonwilliams62@gmail.com .
This research was first shared as an abstract at the WPC 2019 in Kyoto. WPC is pleased to support abstract authors by sharing their ongoing work. Digital versions of WPC abstract books can be downloaded from the past three Congresses HERE.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®