Carmel Mahoney (left), Zoran Temelkovski and Lesley Errington are helping others with Parkinson’s but need the community to support them. Photo: Keeli Royle.
Leaders within Kiama’s Parkinson’s support group are trying to change perceptions about the disease and educate the public about what it is like living with the symptoms, to help create a more inclusive and supportive community.
Carmel Mahoney was diagnosed with Parkinson’s 11 years ago when she was just 54, and helps manage symptoms and disease progression with medication, therapies and an active lifestyle.
“I do a lot of exercise and a lot of varied exercise,” Carmel said. “I do cycling, yoga, specialist PD classes called PD Power in our case. PD Warrior is another well-known one I’ve done in the past. I walk, look after grandchildren, play golf – a broad range of activities, trying to work out all parts of your body and your mind too.
“I’ve been really lucky, my coordination and balance haven’t been too badly affected but only because I do the activities that help with that.”
But while Carmel may appear to be thriving, the challenges of living with the disease are often invisible.
“It’s having to think about what you do before you do it, and that mentally tires you,” she said. “That’s why you start to get tired by the end of the day, because you’re thinking about walking properly, lifting your legs, lifting your knees, going to sleep, even – you’re trying to relax your body so that you go to sleep.”
For Lesley Errington, focusing on those little things is vital, especially now that she lives alone after her husband died last year. Tasks that many don’t even think twice about, like changing clocks for daylight saving, are delayed until someone else is present.
“You’re continually making allowances so you don’t fall over or so you don’t drop things,” Lesley said.
“I’m very conscious of having falls, very conscious of never climbing up on anything.
“Those things you just take for granted.”
Even the timing of taking medication and eating needs to be considered.
But it’s also the stigma and isolation surrounding the disease that are challenges, particularly if people aren’t aware of how varied it can present, with more than 50 symptoms.
“They will avoid you or think you’re drunk, especially with blokes more so than women,” Leslie said. “They don’t understand that it’s part of the condition, the movement, and shaking.
“And the things you can’t see are often the things that affect our emotions and our general living the most.”
Fear of negative perceptions was part of the reason Zoran Temelkovski put off treatment when he received the shock diagnosis at age 49.
“I was in a bad space, in denial,” Zoran said.
“But there comes a time when things just give and you can’t hide it anymore.”
His only knowledge of Parkinson’s was based on elderly people or Michael J Fox, and he didn’t have anyone who understood what he was going through.
“When I found out, I had no-one and that made it worse,” he said.
Now Zoran, Lesley and Carmel are helping others living with the disease in the Illawarra, by leading Kiama’s Parkinson’s support group.
Parkinson’s NSW estimates 153 people are living with Parkinson’s in the Kiama local government area, but with family and carers all impacted by the disease, the number of those affected is closer to 450 local residents.
As well as hosting talks and events, facilitating conversations and spreading information, group leaders often field phone calls and meet members to discuss their experiences.
But although they can help on a personal level, the group still needs support in improving accessibility to medical expertise.
“The other thing that a lot of the regions have is a Parkinson’s specialist nurse,” Lesley said. “We don’t have one, and we want one and we need one.
“We had one for a little while that was funded by Parkinson’s NSW but we need it to be funded by the local health district.
“As support group, people don’t have those skills and people are actually ringing us with medical questions, and you feel bad because you’re letting them down.”
An Illawarra Shoalhaven Local Health District spokesperson said it was “committed to providing high-quality, compassionate care to people with movement disorders, including Parkinson’s disease”.
The spokesperson said the Integrated Movement Assessment Program “provides assessment, short-term intervention and ongoing care coordination for people with a movement disorder” and “links patients and their carers into other established community and hospital-based service providers, as required”.
“ISLHD does not have a Parkinson’s specialist nurse, however, the district’s rehabilitation clinical nurse consultants provide care to patients with Parkinson’s disease based on individual needs,” they added.
And while the community supporting Parkinson’s groups through fundraisers and exposure is important, breaking down the public perceptions of what Parkinson’s looks like and what people are going through is a vital step for the Illawarra community.
“I don’t want sympathy, I just want them to understand me and encourage me,” Zoran said.
Carmel added: “There’s that perception that you’re going to be old and crotchety or bent over, and we might be one day, but at the moment we’re not.
“They’re grandparents, and aunties and uncles and friends, just like everyone else.”
For more information, visit the Parkinson’s NSW website, contact the Kiama group at parkinsonskiama@gmail.com, or call Lesley on 0416 219 364 or Carmel on 0417 068 852.
I see how it is, Jks Jks, so good they came down to… 
