At 39, Carl had big plans for his future. He had a job he enjoyed and four children to raise. But a diagnosis of Parkinson’s changed his life forever.
It all started when colleagues noticed Carl had slowed down a lot at work. His walk had changed. Carl hadn’t recognised any problems himself, apart from a sore left arm so he shrugged it off for a while
until his wife convinced him to see a GP, who immediately booked him in to see a neurologist.
“It never once crossed my mind he would say it was Parkinson’s. But he picked it up the moment I walked in the door.” – Carl
The news shattered his world, his family and his dreams.
Thousands of Australians like Carl get a diagnosis of Parkinson’s every year. In an instant, the life they
thought they knew has gone forever. They have to try and get to grips with this terrifying, confusing
new reality. And they can’t do it alone.
That’s where Parkinson’s NSW comes in. We connect people living with Parkinson’s to a world of
practical and emotional support to manage this complex condition. But we can’t do it alone, either.
“I was stunned by my diagnosis for quite some time. I didn’t really know what Parkinson’s was.” – Carl
Parkinson’s is a terrible disease at any age, but early onset Parkinson’s is particularly cruel. People
like Carl are often in the middle of some of life’s biggest challenges – raising children, managing a
demanding career, perhaps paying off a home. Parkinson’s forces a rethink of everything.
For Carl, it was all too much to take in. He took his medication and tried to ignore what was
happening to him. But one day, as he had to give himself an injection via a cannula as part of a
hospital trial, the reality hit him, hard: “this is what it’s going to be like for the rest of my life.”
He reached out to Parkinson’s NSW’s Healthline – and that one phone call changed everything for him.
First, we arranged for Carl to attend an education session for people who are newly diagnosed. It was a turning point for Carl, who simply didn’t know where to go for help, or even what help he might need.
One of the biggest information gaps we find with early onset Parkinson’s patients like Carl is
knowledge around accessing the NDIS (National Disability Insurance Scheme) to help them manage
their condition.
Carl worked with Parkinson’s Nurse and NDIS Advocate, Margie to make sure he obtained the
reports he needed - and that they truly reflected the challenges he faced, so he could access the right
therapy and support programs.
“Margie was awesome. I hadn’t realised until then how much Parkinson’s affected my whole life – even just getting dressed in the morning.”
Vital, practical support like NDIS advocacy is just one of the many ways your gift today can make a meaningful impact on the daily lives of people with Parkinson’s.
Carl couldn’t be more grateful for Parkinson’s NSW – and people like you, who support our services.
At a time when everything was falling apart, including his marriage, his NDIS Support Coordinator at Parkinson’s NSW helped him to pick up the pieces again, one by one.
Thanks to that first phone call to our Healthline, Carl is now getting on top of his Parkinson’s in a way
he could never have imagined a few years ago. He attends a support group in his area for early
onset Parkinson’s, which has become an important source of information and social connection. He
does his speech therapy diligently and has discovered common ground with his teenage son, they have a friendly competition to see who can lift the heaviest weights.
He and his children are still working their way through what it means to have a dad with Parkinson’s and he worries about the impact Parkinson’s is having on his ability to work.
But while Carl is still uncertain about the future, the one thing he knows is that Parkinson’s NSW will
always be there to support him – and that means everything to him.
“When I was a mess, they got me through. Parkinson’s NSW is like a safe place for me.
Without them, I’d have been lost.”
But as more people are diagnosed, we urgently need funds to help us continue providing our
life-changing services – from funding Specialist Nurses in regional areas to staffing our Healthline.
Your tax-deductible gift today ensures we can continue to be there for people like Carl as they continue on their Parkinson’s journey. It’s a long and difficult road and no one should ever have to walk it alone.
