It's a changing of the guard that no one wants to contemplate or willingly be a part of, but it's necessary.
Parkinson's ACT this week celebrated 40 years of helping the Canberra community and the estimated 3000 local people diagnosed with the progressive, degenerative neurological disorder.
Now younger people, with early-onset Parkinson's, are stepping up to ensure its work continues.
One of them is Belconnen man Symon Badenoch, who was diagnosed with Parkinson's disease when he was 48.
He's now 53 and joined the committee of Parkinson's ACT just a couple of months ago.
Symon said a lot of people with early-onset Parkinson's might manage their disease but assume they don't need support beyond that.
"The battle for me is that young onsets don't want to be part of these sorts of groups. I think the goal for me is to break that stigma a little bit," he said.
"Because, us young-onsets, we've generally got our head in the sand, 'life's going to be alright', they've got kids, they're in their prime income period, they feel they don't need these kinds of groups.
"I'd like to change that and get more people involved so there's more connections, because it can be isolating."
Symon said before he was diagnosed at 48, he suffered years of symptoms. That included his handwriting inexplicably becoming smaller, fatigue and a sore shoulder. His right arm and hand eventually became so painful, he had to move his computer mouse using two hands.
He thought the symptoms were sports-related. He was sent to a pain specialist "who told me it was all in my head". His GP eventually referred him to a Sydney neurologist and "within two minutes" he was diagnosed with young-onset Parkinson's, which is anyone diagnosed with the disease before 50.
"There's some relief there, because you finally know what it is. But that turns to being shattered and 'What's going to happen from here?'," Symon said.
"Like a lot of people, I thought Parkinson's was an old people's issue, not a young person's issue."
Symon and his wife Jayne Spice, who live in Weetangera, ran a real estate agent for many years. But he has now retired to keep on top of the disease. That's done with a strictly controlled regime of drugs, which must be taken on an empty stomach to be effective, sometimes as often as eight times a day.
"Everyone has different symptoms. For me, I lose the use of my right arm. If the drugs aren't working, it just freezes up completely, and I'm right-handed," Symon said.
"I also need the drugs to sleep so that means getting up in the middle of the night.
"People with young-onset look normal, but behind the scenes we're trying to juggle our meds. It's more a mental battle than the actual disease because every morning you've got to get up and plan. You've got to get up and fight again."
The 40th birthday of Parkinson's ACT was marked at LDK Amberfield in Weston on Thursday.
Parkinson's ACT chair Marcia Kimball said over those four decades, the local charity had provided information, education, support services, activities and connection for people living with Parkinson's, their carers and families.
"The anniversary is an opportunity to recognise the many volunteers, and contributors whose commitment has helped sustain the organisation and its services over four decades," she said.
"Since 2022, The Hospital Research Foundation Group (THRFG) as a major South Australian charity has underpinned Parkinson's ACT with a merger and by providing an office and a small, allied health team."
Mrs Kimball said the work of the organisations was more important than ever.
"We know that Parkinson's is on the increase, with an ageing population, as the fastest growing neurological condition in the world," she said.
"There are over 150,000 people living with Parkinson's in Australia. Fifty Australians are diagnosed every day, with one in five of working age, many with mortgages and often young children."
