Maybe it’s my natural inclination, maybe it’s my training as a Social Worker, but I know that I am a planner. I like to know what I am doing and who I am doing it with in almost every aspect of my life. Don’t get me wrong, there is room for spontaneity, but I do like to know what is happening in life.
So, with Parkies as my uninvited life partner there is a lot that I cannot plan and that can feel uncomfortable at times. That is what makes learning as much about this thing I call ‘Parkies’ so important to me. So, I look on websites, like the Michael J Fox Foundation – my Parkies hero – The Michael J. Fox Foundation for Parkinson’s Research | Parkinson’s Disease (michaeljfox.org) and other sources of inspiration of people living with Parkinson’s.
This weekend, I go to the Parkinson’s New Zealand, National Upbeat Weekend Conference National UPBEAT Conference 2021 | Parkinson’s New Zealand (parkinsons.org.nz) to hear from experts in the field, but also the real ‘experts’ 160 people with Parkinson’s and their supporters. I cannot change my diagnosis, I cannot fully plan for this thing that rides on my shoulders, that inhabits the corners of my life, but I can learn strategies that can help me plan how I can live my life better and have a richer existence despite Parkies’ efforts to diminish me. I can meet others with this condition and through shared experiences build a network of support and a bank of knowledge that will support me. In turn, I can share that experience with my fellow Parkies people – I refuse to use the term ‘sufferers’ – so we can all share and learn from each other.
I refuse to be reduced or defined by this condition. I will continue to be a planner and to learn ways to live my best life and look forward to moving forward with more confidence following the conference. Parkies may have forced itself into my life, but I remain firmly in the driver’s seat and intend to remain so!
My journey with Parkinsons 