Knowing you’re not alone is a huge gift.
When Dani’s dad was 50, his family noticed an uncontrollable tremor in his left pinkie finger, “like Michael J Fox”, Dani said. Soon, he had a diagnosis of Parkinson’s.
But when Dani started experiencing her own symptoms a couple of decades later, it took her a long time to put the pieces of the puzzle together. At first, her sudden onset of severe anxiety and depression were put down to psychological factors.
It wasn’t long, before other, more obvious physical symptoms began. A strong swimmer, Dani found her right arm would no longer swing and her right leg wouldn’t kick. Eventually, after months in limbo, she got an appointment with a neurologist who gave her the devastating news.
“Before I even sat down for the consultation, he said, “You know what you’ve got? And I said, “I’ve got Parkinson’s.”
That's where Parkinson's NSW comes in... for support, referral, connection and hope.
A diagnosis of Parkinson’s is terrible at any age but increasingly, we’re seeing it develop in younger people like Dani.
Learning you have a complex, lifelong neurological condition that will worsen over time can feel heartbreakingly lonely. More than anything, people like Dani need to know they are not alone. That’s where Parkinson’s NSW comes in.
Dani said the months she went undiagnosed were some of the hardest of her whole life. As someone who is naturally resilient and hardworking, she refused to let her symptoms consume her and kept working as a schoolteacher every day. But she was utterly drained.
“I was just going through the motions of going to work and coming home. I stopped going to the gym. I stopped seeing friends.”
These debilitating, confusing months were traumatising for her whole family, including her partner and teenage daughter, who was studying for her HSC.
Finding Parkinson’s NSW was a turning point. Even though Dani had some experience of Parkinson’s because of her dad, there was a lot she didn’t know. From the first call to the Parkinson's NSW InfoLine, Dani found friends who could guide and support her to get the help she needed.
Our small team covers a lot of ground, from advocacy for NDIS plans, information and guidance on medication and therapies to improve symptoms. We help put people in touch with support groups in their area, so they can connect with other people who understand what they are experiencing.
And we help fund Parkinson’s Nurses in key regional areas – an absolutely critical service for people who live a long way from specialist care.
But as demand increases, especially for our InfoLine, we urgently need to fund more specially trained staff who can answer those calls for help.
At a time like Christmas, your gift today will help us ensure we’re here for people like Dani, when they need us most.
Now, Dani’s on the right medication and her life is getting back on track. But being diagnosed with Parkinson’s has lit a fire in her. Now studying for a Masters in Social Work, Dani is passionate about helping other people like her feel welcomed and supported in the community.
Together with her mum, she raised several thousand dollars in our recent May Step Up Challenge and she’s used her skills as a teacher to start conversations about Parkinson’s at her workplace, at her gym and on social media.
“I think it’s so important for people to know a service like Parkinson’s NSW is there. But also to understand what Parkinson’s is, beyond the Michael J Fox-Hollywood version of the condition.”
Dani believes that when you have a disease like Parkinson’s, strong relationships and support are the most important things you can have. We believe that too.
That’s why we really do need people like you to get behind us. Your gift these holidays will ensure we can keep being here for people living with Parkinson’s, today and tomorrow.
Thank you so much for your support.
You're not alone with Parkinson's
