When Robyn was diagnosed with Parkinson’s disease in 2017 on her 62nd birthday, she began seeking support and educating herself about the disease with a proactive and positive attitude. Known as the ‘Energiser Bunny’, Robyn is an advocate for exercise to slow progression. She has also been active in the local, state and national Parkinson’s community through fundraising, raising awareness and speaking opportunities in pursuit of a cure. You can hear more about Robyn’s personal story at PD Warrior’s INSIGHT conference here.
Six years on, she has teamed up with her friend Graham ‘Perko’ Perkins, to fundraise for research and find a cure for those in the future. We spoke to Robyn all about their upcoming fundraising ride, her experience with Parkinson’s, and her advice for other’s making a difference for Parkinson’s.
Hi Robyn, tell us all about your Iron Butt Motorbike Ride Fundraiser! What is involved, and how did it come about?
My good friend Graham approached me with the idea that, since he was embarking on a personal motor cycle ride challenge, the Iron Butt Ride, that it was an opportunity to raise money for a Parkinson’s charity of my choice.
The ride itself involves him riding his Harley 1600 km within 24 hours with proof and documentation. He has chosen to do the challenge on September 17th, giving him time to be physically and mentally prepared. He is extremely safety conscious and an experienced rider.
What Graham has to say: “I have worked in professional football for over 20 years and met a lot of tough human beings but Robyn would be undoubtedly one of the most mentally and physically tough human beings I have ever had the privilege to know. I have seen her struggles first hand with this insidious disease and way she deals with it day to day is truly inspirational. This is why I have teamed up with Shake it Up Australia, who fund vital research to find a cure for Parkinson’s disease.”
What drives your commitment to fundraise for Parkinson’s?
Being proactive in managing my Parkinson’s encompasses self education, so knowledge of this condition, its variations and complexities has been part of the journey. In these times with AI, VR and even, more than 50 years ago, the moon landing, it’s challenging to accept that no cure has been discovered to maintain quality of life and restore confidence in their future of those diagnosed with Parkinson’s. Whilst it’s unlikely to benefit me, we are all responsible for considering others of future generations.
Why did you choose to raise funds for Shake It Up Australia?
We actually have Shake it Up as a beneficiary in our wills and I like that 100% of donations are directed to research rather than administration. Previous fundraising has been at the local and state levels. This is a good time to go national!
Why are you passionate about exercise? How has it helped you?
Since exercise is the only known method of slowing progression in some symptoms, it’s a major and essential component of my PD management. It’s helped by allowing me to continue to live the nearest thing to a normal life. I’ve met some committed and inspiring professionals and made some good friends as a byproduct
What do you want people to understand more about Parkinson’s disease?
- It doesn’t discriminate. No matter your position in society, your nationality, level of education nor gender.
- Everybody is different in their symptoms and how they present.
- It’s incurable, progressive and debilitating, affecting not just movement but confidence, relationships and functional capacity in what comes automatically to others.
- There are more non-motor symptoms than the obvious motor/movement problems.
- It’s there all the time, doesn’t take a break or a holiday and it’s not going away.
What words of advice do you have for others hoping to make a difference for Parkinson’s?
Stay positive. Persistence pays off.
Be organised. Establish a network of supportive people and diversify your strategies.
Every bit counts.
Never give up.Shake It Up supporter Robyn says it’s challenging to accept that no cure has been discovered for those diagnosed with Parkinson’s. She is raising money to help those in future generations. Click To Tweet