Learning from the ‘experts’ on Parkinson’s

This journey that we find ourselves on is one in which we are constantly learning. Constantly seeking the knowledge to understand this condition, what it means for each of us and for the people who are in supporting roles in our lives.

When I say the word ‘expert’ many would find themselves thinking about those professions in health who have a clinical and professional knowledge of Parkinson’s. They are of course important – without them we would not have a diagnosis – but they are not the most important people that I personally think of as experts. For a start, I may be lucky to see my Neurologist once a year, might ring his specialist nurse perhaps three times a year and my GP – though he is a very good GP – has limited in-depth knowledge of Parkinson’s.

The experts I am talking about are the type of people I hope to reach with this Blog. They are the expert carers, who through trial and error and their own personal experiences know the person with Parkinson’s intimately and do their best to support their individual needs. As each of us is an individual, so too our experience of Parkinson’s is our own individual experience. We may identify with facets of each other’s stories and these can be helpful, but no two Parkinson’s journeys are exactly alike.

The other experts I refer to are those of us who have the diagnosis of Parkinson’s. We are learning about ourselves and our needs as we go along. In turn we can inform and educate those we live with, work with, friends, family and others in our community about what Parkinson’s means for us as an individual.

While we each – as carers and people with Parkinson’s (PWP) – have our individual experiences, we can learn and share with each other what works for us and amongst the many conversations we can glean strategies and ideas.

Early on in this journey I found a Facebook group called AUST & NZ PARKINSON’S SUPPORT AND CHAT . It is a source of inspiration for my life and often for this Blog. It is a safe place and predominantly a positive place for all of us to share with each other. Those of us who contribute to the page are encouraged to share artworks, crafts, stories or poetry and any other thing that we wish to share with the group. Group members make complex quilts, paint, draw, do photography and have many more activities and talents. The emphasis is focussing on what we can do, not on what we may be finding difficult. 

This honest forum is one in which people will post about some of the challenges they face, or ask where others have sought help. The group’s combined knowledge is an incredible resource for us all and participants are caring, honest and supportive. This is exactly what I need in my life and I feel privileged to be part of this group.

So for me the experts that I need in my life didn’t learn about this condition through medical books or lectures, but through lived experience. They are a group of determined and focussed individuals trying to make the most of this life that we have since our diagnosis.

So, say after me “My name is (your name) and I am an expert in my Parkinsons”. For we have knowledge and wisdom beyond any book we could ever read or any lecture we could attend.