Each month, we spotlight Moments of Victory® from people in our community. Today, we are happy to feature Sue Edge from Meadow Springs, Western Australia.
briefly describe your journey since diagnosis
My journey has been a roller coaster ride…full of highs and lows. Initially I struggled with the diagnosis and felt a loss of identity. For 16 months I survived but didn’t live. Then one day, in January 2012, while searching the internet for inspirational quotes, I came upon one by Michael J. Fox which changed my whole outlook and way of thinking.
I decided to research what exactly was known about Parkinson’s including how to live well with it, what I could do to slow down the progression, how to help others living with Parkinson’s do the same, and how to educate the general public. Since I began to choose to live well with Parkinson’s, I have developed skills I never dreamed I would have.
I have held exhibitions to raise money for Parkinson’s Western Australia. I’ve spoken to many people at seminars and events and have even done a TedX talk. Before Parkinson’s, I had always been afraid of public speaking.
I have started to paint and formed a group called the “Unsteady Hand Mob,” and I host trimonthly creative workshops for people affected by Parkinson’s.
I lead a boxing class for Parkinson’s every Tuesday at my house and am in the process of making a hospital kit for people with Parkinson’s.
I have written a children’s book with the help of my grandchildren called Our Bobble-headed Nanna, which introduces Parkinson’s to kids in a simple, humorous way. I’ve also written many poems (mainly humorous), and intend to publish them. And in 2019, I produced a play called Kinetics by Sue Wylie, which won four Finlay Awards.
All of these things would not have happened if I had not gotten Parkinson’s, so even though it’s an insidious disease, I have become a different person, with many new and exciting skills.
How do you live well each day?
I wake up and take joy in the fact that it’s a new day. I choose to wake up to enjoy it.
I try to learn something new every day and help at least one person.
I take my medications religiously on time, exercise, go to physical therapy, aim to engage with at least two other people, and try to paint for at least one hour a day.
what do you wish you would have known when you were diagnosed with parkinson’s?
First, I wish I had known early on that exercise, particularly boxing and cycling, were so effective at slowing the progression.
And second, I wish I had known these four quotes the day I was diagnosed.
“I don’t have any choice whether or not I have Parkinson’s, but surrounding that non-choice are a million other choices I can make.”
-Michael J. Fox
“Accept, Adapt, Adjust.”
“Life is not about waiting for the storm to pass; it’s about learning to dance in the rain.“
and most importantly
“You don’t die OF it, you die WITH it.”
what do you wish everyone with parkinson’s knew about living well?
I want them to believe that ACCEPTANCE is vital before you can fight the fight, and that acceptance doesn’t mean resignation, it means that it is what it is and now you can find a way to live well with it and not fall apart. Parkinson’s is not life ending, but it is life changing.
SHARE YOUR VICTORY
Each month, we spotlight people from our Parkinson’s community who embody living well today – what we call Moments of Victory. Your story, like Sue’s, could be featured on our blog and Facebook page so others can learn from your experiences and victories.