Having a Virtual Cycle of PWP Support

We all vividly remember the moment of diagnosis and our first responses to it. We were shocked and worried patients. Some of you may presently be in the early diagnosis phase. It is not easy to go from being a person to a patient.

We also know that people who live with Parkinson do better when they can learn from each other. We can make the transition from person to patient and back to person. How do we make this journey and what makes the difference?

The global Parkinson community set out to fill the gaps in. The findings were set out in a poster “From Impairment to Empowerment”at The World Parkinson Congress 2019 in Kyoto, Japan. They identified four distinct stages in the transition; at each of the stages PwP were supported by other PwP. In parallel, the 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. They 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.

Here at PWP Wellness Project we see just how well this model does work in practice. Friendship from a wonderful group of people, useful source of information, support for each other, and interesting talks accompanied by tea, coffee and biscuits. We get support from each other and a sense of community. We also must emphasize the importance of connecting 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 us with a ‘proof of concept’ of just what PWP does for us all. With us being in isolation, it has been an easy task thanks to our Manager Krista, member Chris Miles and our instructors and volunteers. We have encompassed the technology of Zoom to keep the continuity of our activities by providing exercise and meeting space on-line.

A Parkinson’s diagnosis can, in a split second, change a person from a fully competent adult to a dependent patient.

However, we have also moved at PWP 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; and from passivity and apathy to activity which has allowed us to go from isolation to community involvement.

PWP helps us to go from person to patient and back to person again! See you Zooming for now and when we can get back to our space we will continue on as our PWP community!

Jillian

READ BELOW ARTICLE PUBLISHED IN LANCET NEUROLOGY MAY 2020 with DR BAS BLOEM