Stories from a Bobble Head Nanna- Learning to live with Parkinsons Disease | Sue Edge | TEDxMandurah

Since being diagnosed with Parkinson’s Disease (PD) in 2010, Sue has beat the feeling of hopelessness and despair, suddenly learned to paint, learned to box, written a book, started a PD support group for people with PD and their families, produced a play and become an inspiration to both the PD and her local community.
Sue lives by two quotes and makes sure that her friends and family do as well... “Life is not about waiting for the storm to pass... it’s about learning to dance in the rain.” (Vivian Greene) and “I don’t have any choice whether or not I have Parkinson’s but surrounding that non-choice are a million of choices that I CAN make.” (Michael J. Fox)
Since being diagnosed with Parkinson’s Disease (PD) in 2010, Sue has worked tirelessly to raise awareness of Parkinson’s in her home city of Mandurah in Western Australia, and her work has spread to Perth (the capital) and beyond.
After beating the feeling of hopelessness and despair when finally (after 2 years of misdiagnosis) being diagnosed, Sue became an inspiration to both the Parkinson’s community and also the community at large.
She has suddenly learned to paint (apparently Parkinson’s opens up the creative part of the brain) and has held two exhibitions at The Niche, head office of Parkinson’s WA…donating a substantial amount of money to the Parkinson’s nurse’s fund. In 2018 Sue was Parkinson’s fundraiser of the year.
Sue spent almost a year knocking on the doors of every gym in Mandurah and surrounding areas trying to get someone to implement Boxing for people with Parkinson’s and finally succeeded with a small gym. Now there is a thriving boxing class with participants showing remarkable improvement in their PD.
Sue also has just published a children’s book called ‘Our Bobble Headed Nanna’ which is a true account of her and her grandchildren’s journey with PD, Pre- and post-diagnosis.
She has also started creative workshops for people affected by PD that have helped many PD sufferers and their partners get out of the house, create great pieces of art and have a positive and motivated group of people to share time with.
Sue has become the go-to person for people having problems with their PD, people having problems understanding their partner’s PD, people thinking they might have PD etc., all the while having PD herself. She suffers from very bad ‘offs’ and has to take medication every 2 hours to keep functioning…. sometimes really struggling to keep going. But she still forges ahead …. making a positive difference. In May 2018 she produced a play about PD called “Kinetics”, which received rave reviews and really promoted awareness. It also won Best Director, Best Actress, Best Actor and Best Overall Production at the Western Australia Annual Finley Awards 2019.
Sue lives by two quotes and makes sure that her friends use them as well... “Life is not about waiting for the storm to pass …. it’s about learning to dance in the rain.” - Vivian Greene. And a quote by Michael J. Fox - “I don’t have any choice whether or not I have Parkinson’s but surrounding that non-choice are a million of choices that I CAN make.” This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at www.ted.com/tedx

[@sunshineof]

Sue, it was a pleasure meeting you today. Thank you for sending me the link to this video. My heart just sings witnessing how you turned PD into a superpower to not just yourself for many others. ❤

[@rosdutczak3186]

What a truly inspirational woman ,you have the most blessed grandchildren to have you as an inspiration.

[@sueedge1015]

Thank you very much. It’s me who is blessed having such beautiful grandchildren..

[@johnrowland3105]

Awesome ! I'm currently living in a world of leg aches; impaired mobility; constant headache; back pain......I went to the Doctor with these symptoms and have been seen by a Neurologist; referred to a 'specialist hospital', yet eight months on STILL awaiting ANY diagnosis ! If it turns out to not be Parkinson's, the comparable symptoms at least give me a heads up as to what may come.

[@kristinvogt6980]

Thank you for sharing ❤️

[@WECOOK1969]

I was diagnosed with Parkinson’s disease May of 2021…. This lady is right on the money.

[@kevinsomers8923]

I am in the process of getting diagnosed and hoping to hear your journey. I was being seen by a neurologist for constant headaches from a possible CSF leak in my spine. However, the Dr. Started doing all the tests I have seen for Parkinson's. I no longer swing my right arm, I am stooped over and so stiff I have trouble moving, cogwheel ridgity in my right wrist, I shuffle when I walk, lots of muscle pain and fatigue, depression and anxiety, i scream and yell in my sleep as well as sleep apnea, vision issues, my right foot feels like it is turning in, headaches, light sensitivity, occasional wet the bed, and cognitive issues, tremor in my right thump and finger, internal tremor, severe random sweating. I can smell and my writing is still good. She is the second doctor to mention PD. I am curious of your first symptoms and progression and eventual diagnosis. 😊 thanks