An interview with Sue Edge on Advocacy through Art & The Unsteady Hand on September 24, 2023 by George Ackerman, Ph.D, J.D.
Live in: Meadow Springs, a suburb of Mandurah, a lovely town 75kms south of Perth the capital of Western Australia
Please tell me a little about your background.
Graduated as an early childhood teacher in 1977. Taught in the far north (the Kimberley) , the Central Desert , and in 3 towns in the south west of WA. Pinjarra, Carcoola and Mandurah. Played Tennis and was an active member of the Murray Music and Drama Club since from 1973-1977 and 1981-2018 also joining the Mandurah Performing Arts Center in 2016. When PD made it hard to remember my lines, I turned to script assisting and stage managing.
I loved my job and “my kids” that I taught and after my divorce I was happy living with my son Josh and daughter Tash. My life was sailing along as expected.
All that changed with my diagnosis in September 2010. After 2 years of tests and accusations of being a hypochondriac, I finally had my answer as to why I was experiencing all these weird symptoms.eg not being able to play the piano properly with my right hand any more, not being able to sprinkle sugar on my cereal, stir my tea or clean my teeth cos I couldn’t do repetitive hand movements any more, always being hot, stiff joints , drooling, hand not swinging when I walked, a twitching thumb.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
When I was finally diagnosed, being a teacher I wanted to learn all I could about PD and use this information to live a better life. Then I wanted to educate the Parkinson’s community about the best ways to fight this disease and how to live a positive and productive life.
I didn’t know much about PD when I was diagnosed and was amazed at how little most people knew about this disease, even though it is afflicting 1 in every 250 Australians. I decided to use my teaching background to help others learn about it.
What type of goals do individuals with Parkinson’s have when working with you?
In 2015 I discovered that I could write poetry, usually at ‘stupid o’clock in the morning and started a blog.
In 2017 I discovered I could paint and when I started my Neupro Patches I developed a Painting obsession and painted morning, noon and night on any surface, anything or anyone who stood still long enough. One month I painted 42 A3 sized paintings in 30 days.
Things that I have done re: PD in the past 13 years to try to educate the community about PD, provide help and support to people to live the best life they can if they have PD, and importantly provide support for other family members who support the PWP…..
What effect can your advocacy have on an individual with Parkinson’s?
- 1. Started a boxing group for people affected by Parkinson’s.
- Started a monthly lunch outing for PWP and their partners. This provides a safe place for PWP to discuss their problems and solutions AND for the care partners to do the same thing.
- Started a group called The Unsteady Hand Mob. A group for people affected by PD in some way. Twice a month I host creative workshops for the group and teach painting skills.
- Taken over the Parkinson’s WA support group when it was going to close because no-one would run it. This has some of the same participants as my other group but is under the umbrella of Parkinson’s WA and is more formal than my Unsteady Hand Mob. Meetings once a month.
- In 2016 I made up a team, ‘The Edge Mob’, of family and friends to participate in the Parkinson’s WA’s “A Walk In the Park” which raises money for the Parkinson’s Nurses’ Fund. In that year we won a prize for ‘The Most Team Members”. We have participated every year since.
- I wrote a children’s book with my grandchildren and self-published it. I have had many readers express how helpful this is to introduce PD to their kids. In 2023 I turned the book into a video for the 2023 Barcelona Parkinson’s Congress video competition. I
- In 2018 I won Parkinson’s WA fundraiser of the year.
- In 2019 I produced the play ‘KInetics’ by Sue Whylie to raise awareness of PD .
- In 2021 I Did a TEDx Talk.
- 10. Over the years I have made videos to help people understand PD a Bit more.
I have put the links on your messenger if you’re interested.
- Rewritten words to the song “I Don’t Know How To Love Him” by Tim Rice and Sir Andrew Lloyd Webber for a Song writing competition at Barcelona. I received permission from Tim Rice to use it as an awareness tool at my talks and Plays as long as there was no monetary award for me. I’ve sent to to you on fb messenger to listen to was well.
- I have become the ‘go to’ person for people in the Mandurah/Peel are who are newly diagnosed or who are struggling with day to day living or any other problems. Sometimes they just need a shoulder to cry on.
- I’ve developed a hospital kit/ grab bag which has proved very popular with people needing to
- Held 5 art exhibitions at the Niche (Parkinson’s WA headquarters ) and given 20% of sales to the Parkinson’s nurses program. Resulting in just over $1000 raised.
- Gotten over my crippling fear of speaking to adults in a group. Besides my TEDx talk I have spoken to groups of people at places like the Rotary Club, The Lions Club, Nurses, teachers to name a few.
- In 2023 I produced AND directed a play by Jane Cullen, Say That Again Firstly to raise community awareness about PD and raise money for then Nurses’ program. I didn’t expect to raise much as the venue costs were so high…but due to the venue donating $1134 of that cost, Jane asking for no royalties or payment for using her script and great attendances at both shows, we managed to raise over $3,100.
What would you like to see as a future goal for your programs?
I am in the process of packing up my home 19 years ..I built it nearly 20 years ago and was a teacher until medical retirement and an artist since 2017, so you can’t imagine how much “stuff” I have had to cull as I’m moving into a retirement village and really downsizing. The amount of stuff I’ve given away in the last few months has been astounding as has the amount of stuff that has got to the tip. For example, at last count I had given away over 752 children’s books and there are probably 250 left to sort through ! I though of selling stuff and did donate some things to the local thrift stores, but I preferred to give things away to those who really needed it.
How can someone get in touch? What is your website?
It someone wants to get in touch with me they can either flick me an email at email@example.com with Parkinson’s in the subject box so I know it’s important.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
- “I have no choice whether or not I have Parkinson’s Disease BUT surrounding that non-choice are a million other choices I CAN make” Michael J Fox
- “Life is not about waiting for the storm to pass….
It’s about learning how to dance in the rain.”
- “Accept, Adapt, Adjust.”
Sue Whylie (author of Kinetics)
And the special one for those struggling to accept it:
- “Acceptance DOESN’T mean resignation,
it means it is what it is and there has to be a way through it!”
Michael J Fox