The Guest Speaker at the 5th of August meeting of the Rotary Club of Pinjarra was Sue Edge.
Sue is well known in the Murray Shire area- her father was Post-Master for Pinjarra for some years. After leaving school, Sue undertook Teacher training at Graylands College, and folowing her graduation, and has taught in schools State-wide; from Halls Creek and everywhere in between, through to Frederick Irwin College in Mandurah.
Sue has entered her artworks into the Annual Alcoa-Rotary Club of Pinjarra Art Show and Sale on two occasions. Sue has two children and three grandchildren. And is an avid fan of the Fremantle Dockers!
Sue was happily on her life journey when she noticed things that were not quite right, her body started to do things that she was not in control of. It was a long journey, taking over two years, consulting numerous doctors, undergoing test after test before she received her diagnosis; Parkinson's Disease. Sue observed that "The only way to truly know if an individual actually has the condition is through an autopsy of the brain." She decided dying just to prove a point was probably not a good option. It appeared that, effectively if a patient takes the anti-Parkinson's Disease medications, and the treatment works; then the patient has Parkinson's Disease.
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Following her diagnosis, Sue discovered there is very little basic, easy to understand information available for the "new patient". Parkninson's Disease is an incurable, degenerative, neurological disorder, and this information left Sue in a highly anxious state.
However, some 16 months after her diagnosis, Parkinson’s WA provided a nurse who told her, "You die with PD; not of it". That, and a comment attributed to the Americal film actor, Michael J Fox (himself a Parkinson's patient- diagnosed at age 29), were pivotal moments for her in the way she now treats PD.
Her first step was to NOT refer to it as Parkinson's Disease- rather Parkinson's Disorder, or simply PD.
She then wrote herself a to-do list, and went about doing it!
Faced with the problem of how to explain her condition to her Grand-children, she engaged with them to write a book … “Our Bobblheaded Nanna”... The book is now published and is being used so that other children can have some understanding of what their grandparent is experiencing.
A fuller story of Sue's PD journey can be found by following this link to her online Blog: https://bobbleheadnanna.wordpress.com/
Please take the time to do so; the story, in Sue's own words, is simply inspirational!
Sue says, "You need to Accept, Adapt, Adjust". She is now positive, motivated and happy. She knows that everyone has the power to make choices about one's choices, OR the non-choices. "Life is not about waiting for the storm to pass; it is about dancing in the rain!"
Sue spent the first six months after retirement feeling lost, but trying to find a purpose. Her first creative efforts were fairy houses and wind and sun catchers. However, Parkinson’s affected her fine motor skills, and she found the small detail work impossible to execute. So Sue’s search for her Happy Place resumed. Although she had never been able to draw or paint, she loved color. Inspired by her childhood nickname Big Bird and Lucky Legs, she began painting birds. She discovered that her quirky emus with their big personalities made people smile and made her happy.
Sue’s philosophy is “PD does not change the fact I have a life. It changes the way I do things. Dream, believe, adapt and achieve. Adaptation is key.” For example, when she struggled with the repetitive motion of putting dots on the bird paintings, she adapted. When she played music with a distinctive beat, she successfully painted the dots.
Sue has supported Parkinson's WA through her artworks and has developed a self-help group; "Sue's Unsteady Hand Mob".
If Sue's story causes you to consider donating to Parkinson's WA, you may do so by following this link: https://awitp.raisely.com/sues-unsteady-hand-mob
Sue's artworks and book, “Our Bobblheaded Nanna”, may be purchased by following this link: https://www.parkinsonsmyway.com/2019/08/sue-edge-finds-happy-place-is-creativity/
Sue’s next fundraising event in support of Parkinson’s WA and the Unsteady hand Mob:
When: Friday 27 August 11.30 am – 1.30 pm
Where: Falcon Library
Tickets: $16
Bookings Essential
Sue’Contacts:
Email: noosemum@gmail.com
Blog: bobbleheadnanna.wordpress.com
Mobile: 0439 696 787
Murray Chapman thanked Sue for the gracious way that she shared her story and the information for PD. The way she goes about life is an inspiration.