I don’t have a choice that I have Parkinson’s, but I do have a choice what I do with it. I want to go forward to my Happy Place. ~Sue Edge
Sue was diagnosed with PD in 2010 and was forced to retire for medical reasons in 2015. She had worked the previous thirty-seven years as a teacher in Western Australia including Halls Creek, Central Desert, Pinjarra, Carcoola and Mandurah. 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.
Color Her World
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.
Poetry in the Wee Hours
Besides painting, Sue was especially prolific for four months in 2017 when she wrote poetry in the middle of the night. She found that she had to get up and write the poem down before going back to sleep. To Sue’s amazement, she is better able express on paper what is in her head since having PD. She is now in the process of editing her collection and hopes to self-publish by the end of this year. Sue wrote the following poem in January 2017 which appears on her blog.
Awake again at stupid o’clock
Wishing that I had a huge, sharp rock
To fling at that Parkinson’s annoying head
So I could sleep peacefully once more in my bed.
Wishing that I could be free once more,
To do things without them being a chore.
To be free from this ever present pain
And be able to do everything normally again.
To not be scared of freezing at inappropriate times
And be going back to work Instead of making up rhymes.
But wait…..what’s this I hear?
That ‘think positive’ bug is in my ear
Telling me to look for the good
And not go moping all over the neighbourhood.
So I’ll haul myself out of bed
And go pedal on my exercise bike instead.
Singing along with The Beatles, a bit out of key
But showing the world it’s good to be me!
PD is a family affair in the Edge household. Her children Josh and Tash are supportive. Sue has also written a children’s book based on her two granddaughters’ viewpoints. Her grandson wanted to be involved as well. So he named her book Our BobbleHead Nanna. She also hopes this book will be published. In the meantime, her younger granddaughter is helping her to make it into a video for an upcoming Parkinson’s convention.
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.
If her hand does not want to hold a paint brush when she is ready to do a background, she simply puts the paint on her hand and paints. Michael J. Fox would agree that Sue has found “a way through it.” “You can be creative with PD,” Sue acknowledges. “There are days when I am painting that I am at peace. I can go longer between off periods. Painting takes me to my Happy Place and sometimes I feel normal and without symptoms.”
Exhibition Leads to New Venture
Sue’s artwork has appeared at two exhibitions held at the Niche, the headquarters of Parkinson’s Western Australia. She sold fifty-eight pieces and donated 20% of the sales to the PD Nurses Programme. Her goodwill caught the attention of an organizer of an art competition, and she was asked to enter.
After winning $100 voucher to a framing shop, she discovered they made coasters from photos. Sue purchased coasters featuring her favorite paintings to give as gifts. But people wanted to buy them! One resource led to another and since coasters, she has designed leggings, yoga pants and tote bags. Her best sellers are coasters, scarves and shopping bags. She covers her costs, donates some proceeds to the PD Walk in the Park fundraiser for PD WA and then buys new stock with profits.
The Art of Production and the Power of Goals
Influenced by her education career, Sue wanted to produce the rave review Kinetics play at Fishtrap Theatre in the Mandurah Performing Arts Centre to raise PD awareness. Kinetics, written by actress Sue Wylie of the United Kingdom, is based on her true story of coming to terms with her unexpected diagnosis of Parkinson’s at the age of 50 and her friendship with Lukas, a teenage boy struggling with his diagnosis of ADHD and who is into Parkour.
Sue’s friends helped build the set, and the leading lady was an ex-colleague. Grants flowed in from several organizations. Rehearsal started in February of 2019, with the opening in May. Ninety-nine people attended the first night, surpassing the projected thirty to forty! The reaction was fantastic with a total of 264 patrons attending the remaining four productions. Once again Sue proves it is possible to live with purpose while battling Parkinson’s.
The Unsteady Hand
Her latest project is working with Mo Onstad’s “The Unsteady Hand” model based in Colorado Springs. She offered the first creative workshop in Australia on August 1 for people with PD based on “re-imagining Parkinson’s and promoting improved quality of life for those living with Parkinson’s through communal creative engage.”
It is unimaginable what the multi-talented Sue Edge will do next! What a pleasure interviewing her on Parkinson’s My Way.
Keeping in Touch
To learn more about Sue and her creations, go to
Question: Do you have a hobby or activity where you lose all sense of time when engaged in it? You are calm and peaceful and for a time you forget all about Parkinson’s. Please comment.