Henry Blythe’s agile mind and cheeky grin belie the fact he’s just three birthdays away from receiving a congratulatory letter from the Queen.
Todd Murfitt is a 37-year-old primary school principal, happily married and with two young daughters.
Greg Turner’s daughter is 27. She’s in the early stages of her research career after studying neuroscience at the University of Adelaide.
Michael Boileau is a golfing fanatic but doesn’t play as much as he’d like.
Vin Camporeale loves golf too. His son-in-law is professional golfer Stephen Leaney.
This diverse group of South Australians come together at SAHMRI with one thing in common - they all live with Parkinson’s Disease.
They come for a behind the scenes look at the research being done to develop new treatments, and possibly even a cure, for their condition. More importantly, they come to share their stories with each other, and researchers like Dr Cedric Bardy who devote their professional lives to tackling Parkinson’s.
“It’s so important for us to meet the people we work for,” Cedric says.
“We’re focussed on this condition every day, but when your head is buried in the microscope for so long you can forget why we do what we do.
“It’s so inspiring and motivating to meet people for who the fight against Parkinson’s is so much more personal. We can take a break when we go home at night. For them it’s 24/7.”
Serendipitously the group gathers on World Parkinson’s Day – an occasion Parkinson’s SA CEO Olivia Nassaris says is cause for celebration.
“It’s not a ‘Yay! I have Parkinson’s!’ type of thing, but it is a celebration,” she says.
“It’s a celebration of work that we’re doing to help people with Parkinson’s. It’s a celebration of the people doing that work, and the friends, family and carers who are improving the quality of life for people living with Parkinson’s.”
The clock ticks past the session’s allotted 60 minutes. The 90-minute mark comes and goes too, but no one knows or cares about time. Tears and laughter flow in equal measure as individuals tell of discovering they have Parkinson’s, and how it’s changing their lives.
People with Parkinson’s often lose their sense of smell. For Michael it was the first sign he had a problem.
“I also lose my balance sometimes which is terrible for my golf game,” says Michael.
“Sometimes I hit the ball, other times I don’t. It’s hard for me to get that movement of the swing from left to right. Sometimes it just seizes up.”
“My golf game’s ratshit too,” adds Greg.
His first inkling something was wrong was when he noticed he was walking without swinging his arms.
“I felt disconnected from my body,” he says.
“It’s like I’m a little man sitting in my brain pulling levers to make my body work.”
“I don’t like talking too long,” begins Henry when it’s his turn.
Twenty minutes later he’s still holding the floor with anecdotes of a long life well lived, and a healthy disrespect for the condition that’s trying to slow him down.
“I don’t worry about it,” he says.
“The only time I worry about it is when I’m having a glass of sherry and I spill half of it.”
Todd is at the other end of the age spectrum to Henry, but is battling a far more aggressive case of Parkinson’s.
“There’s nowhere to go for me now in terms of medication, I’m on the maximum,” he says.
His next step is surgery – deep brain stimulation.
“I’m actually looking forward to having my head drilled open and electrodes inserted in my brain.”
It sounds tongue-in-cheek, but it’s not.
“What I’m hoping to achieve out of it makes any fear aspect to it drain away.”
Before surgery, Todd had to take the ‘dopamine challenge’. The medication he takes is to correct the dopamine deficit in his brain that causes many of his symptoms.
“To qualify for the surgery, doctors needed to see the extent of my condition,” he says.
“That was the first time I’d really seen who I was without medication, and I was terrified of what that would look like.
“It felt like being locked in quicksand. When I was trying to move it just wasn’t happening for me.”
Problems are shared, and top tips too.
“Buy shirts with studs,” Michael suggests, to avoid the finnicky fiddling of threading buttons through holes.
“They should make shirts with zippers!”
Greg encourages people to keep doing the things that make them happy, even if they don’t bring the same joy they used to.
“I stopped sailing, stopped fishing, sold my boat, gave up golf,” he says.
“I realised if you stop doing everything you’d be dead before you know it.”
Apathy is common for people with Parkinson’s. It comes from abnormally low levels of dopamine – the “feel-good” hormone responsible for motivation and reward.
Dehydration is another common problem, which can lead to headaches, “plumbing issues” and other ailments.
“Grapes,” says Vin.
“The high water content can hydrate you without having to drink water.
“I hate water, it won’t go down, so any alternative like fruit or lightly flavoured cordial works for me. I feel so much better ever since I’ve been keeping hydration up.”
A tour of the lab where Cedric and his team does the bulk of its practical work follows the discussion. It’s interesting and informative for the visitors, but the real learning has already been done.
“We’re the ones getting an education today,” Cedric says.
“Our guests have no idea how valuable it’s been to hear them speak. Visits like this are something we try to do regularly and every time we get a different perspective on Parkinson’s, the impact it has on people’s lives and the role we as researchers can play.”
Engagement sessions like this are made possible thanks to Parkinson’s SA and Flinders University, where Dr Bardy is a faculty member of the College of Medicine and Public Health.