Pam Crosthwaite broke her handicap this week.
It’s hard to believe only five years ago tears were being shed on the golf course as Mrs Crosthwaite’s friends marvelled at the improvement in her mobility, following a deep brain stimulation procedure.
In a five-hour surgery at St Vincent’s Hospital – filmed for Network Ten’s The Project – a device similar to a pacemaker was implanted in her chest to send electric currents to her brain.
“That surgery has put me back to the beginning of when I was first diagnosed with Parkinson’s,” she said.
“I’ve been really lucky it worked, and that I’m still driving and playing golf.
“I was diagnosed at 60, and the medication worked for seven years but then it was ineffective.
“Parkinson’s affects your whole body; you lose sense of smell and taste, it’s hard to swallow, and your fine motor skills and hearing go.
“It’s a horrible disease that people don’t know much about – I was a nurse in aged care and I didn’t realise what people were going through.”
Mrs Crosthwaite is still affected by Parkinson’s – there is no cure – but the procedure pressed pause on some of the more debilitating symptoms.
The surgery is not an option for many people, including 54-year-old Judy Bartel.
“I have multiple system atrophy and I have the same neurologist as Pam, but there’s no real treatment for my condition,” she said.
“My balance is affected, so I have to concentrate on my walking.
“It’s hard because I’ve got children and they want me to do things with them, and I can’t.”
Albury Wodonga Health speech pathologist Alys Cummings, who co-ordinates a support group, said most people were diagnosed in their 60s but there were also early-onset conditions.
“We’ve heard about people who have been diagnosed in their 20s – it can affect people at any age,” she said.
“The best way to work through these kind of diagnoses is to take medication, be active, and receive as much therapy as possible.
“At the moment the research into Parkinson’s is still trying to figure out why the diseases turn on.
“They’ve been making a lot of headway in the last five, 10 years, but haven’t quite figured out why for some people who carry the gene it turns on and for others it doesn’t.”
Some Parkinson’s symptoms are due to a decline in the production of dopamine, a brain chemical related to movement – and for about 20 per cent of people with the condition, symptoms will be misdiagnosed.
Members of the Border support group have experienced stigma due to their symptoms including being mistaken as intoxicated, and urged the community to open their minds.
“It can be embarrassing, so it’s fantastic to have the support group,” Ms Bartel said.
“Hearing others talk about it, you think ‘I’m not the only one’.”
Ms Cummings said securing funding for a Parkinson’s nurse educator had been a long-term goal of the support group.
“We have support groups in Albury-Wodonga, Beechworth and Corryong meeting monthly,” she said.
“We know more than 100 people in the region with Parkinson’s, and we support people who have other types of conditions such as multiple system atrophy and progressive supranuclear palsy.
“Part of our goal with the support group is working towards getting a specialist nurse in this region.
“Places like Shepparton and Wagga have Parkinson’s or movement disorders nurses who can provide all that extra help and support for people diagnosed.”
Ms Cummings said it was also important the public perception around Parkinson’s changed.
“People don’t think of active women like Pam and Judy when they think of the condition,” she said.
“Those with Parkinson’s are battlers – they don’t complain – but just like when someone is diagnosed with cancer, you can’t get on with it yourself, you need a lot of treatment.
“The financial and social burden is massive.”
Parkinson’s Victoria, an arm of a national organisation raising awareness and funds for services and research, estimates one in every 350 people are living with the condition.
Chief executive Emma Collin said a North East nurse educator would be beneficial to the region and multi-disciplinary teams were equally important.
“Trained physiotherapists, speech pathologists and other allied health professionals are critical,” she said.
“We need funding for services, and research – with $400,000 we supported eight research projects last year.
“We also speak to health professionals and will be visiting the Beechworth, Wodonga and Corryong support groups in November.
“Parkinson’s Victoria gets a very small amount of funding from the Victorian government to fund our information services and the majority of our support comes from community.
“As of June 30 next year, we will lose that funding from the state government.”
Ms Collin was concerned “an unintended consequence of the NDIS” would be loss of funding for her organisation and others.
“Funding associated with disability services in Victoria will be transferred to the federal government,” she said.
“The NDIS is to support people under the age of 65, and as 80 per cent of people living with Parkinson’s are diagnosed when they’re over 65, they’re out of the scope.
“It will certainly impact our ability to service the community and we’re asking the government to ensure people living with Parkinson’s will not be worse off.”
Ms Collin said Parkinson’s Victoria held an annual walk to fundraise and in its 10th year, the Melbourne event raised $290,000.
“We know many people living with Parkinson’s can be isolated as a result of their condition and we look to the community to come together to raise awareness,” she said.
“We have nine regional walks and we’d love to see people there.”
For the 8th year, a walk will be held on the Border, taking place on Sunday (October 16) from 11am at Sumsion Gardens – a $5 donation will go towards research and support.