Culcairn identity Rob Mackie navigates Parkinson's disease by staying fit and connected

He joined nine different football clubs between Melbourne and the Border and had two seasons of league with Albury Roos.

The Culcairn born-and-bred all-rounder was a skilled cyclist and also ran in the Stawell Gift.

For someone who lives life at full throttle and thrives in motion, a diagnosis of Parkinson's disease is a particularly brutal blow.

Parkinson's is essentially a "movement disorder" with symptoms such as muscle rigidity, tremor, postural instability and bradykinesia (slowness of movement).

Mr Mackie was diagnosed with Parkinson's disease six years ago when he was only 62 but the telltale signs appeared about two years earlier.

There were cognitive and emotional changes months before any physical symptoms manifested.

"It's a bugger of a disease and they don't seem to be any closer to a cure," he says.

"When I sit here and my arm is shaking, I feel self-conscious about it and sometimes I don't want to go out; I know I'm no different to anyone else but it is frustrating.

"It's a long way from what I could do before; I played rugby or footy seven nights a week once and I ran in the Stawell Gift!"

Today Mr Mackie still keeps physically fit on his mixed farm at Gerogery West.

His daily exercise regime includes mat exercises, physiotherapy and gym training supplemented by a healthy dose of farm work "herding cattle and chooks".

"I've got a working dog, a Border Collie called Bob," Mr Mackie says.

"He's getting on a bit and is sometimes reluctant to come out to work so we keep each other motivated!"

The tight-knit Mackie family - including wife Joy and their children Joel, Emma, Shontel and Dana and their partners and nine grandchildren - make up a loving and loyal support crew.

Australian road cyclist and former AFL Women's football player Emma, who moved back to the Border two years ago to be closer to family, relishes her time on the farm with her dad more than ever: "It's nice to be back and reconnected with family."

Mrs Mackie says music and social connection help keep her husband on an even keel.

His favourite bands, Led Zeppelin and Queen, are on high rotation on the turntable at home.

Joel takes his dad to Osborne every Thursday night for a post-football training barbecue.

Mr Mackie also goes to meetings of an Albury support group for younger people living with Parkinson's disease.

"He comes home from the meetings happier; he likes the banter," Mrs Mackie says.

"Parkinson's was always known as an old person's disease yet younger people are getting diagnosed with it all of the time."

The average age of diagnosis for Parkinson's disease is 65.

But about 20 per cent of people living with the progressive neurological condition have Young Onset Parkinson's and are still of working age.

Thurgoona resident and builder by trade Rocky Sutherland was only 47 when he first noticed a loss of dexterity in his left hand.

He visited a dozen specialists over nine months before a neurologist diagnosed him with Parkinson's.

"It's a real shock when you're first told you have it," he says.

"You immediately think of Muhammad Ali and Michael J Fox and other well-known people who have had Parkinson's."

Albury paving contractor Wayne Price found out he had Parkinson's disease a week before his 60th birthday.

He says there were ample hints leading to his diagnosis.

"I was tripping over string lines on jobs," he says.

"I played lawn bowls and I'd go to bowl and I'd stumble forward.

"Three months before my diagnosis I went overseas with my wife Deb and she was saying: 'Stop dragging your foot'. I didn't think I was dragging my foot but after seven weeks I'd worn the sole out of my shoe!"

Almost four years ago Mr Sutherland and Mr Price started the Border support group for people under 65 living with Parkinson's.

Albury Young @ Park is the only group of its type between Melbourne and Canberra.

It has six regular members and up to eight others at different times.

They meet weekly for coffee, monthly for dinner, engage guest speakers and do hikes or camps in the High Country.

Wodonga resident Di Ross, who was diagnosed with Young Onset Parkinson's about five years ago in her mid-40s, says connection and exercise are key to navigating any chronic illness.

Ms Ross hikes and does CrossFit year-round; she is now ranked 14^th in the world in her division of adaptive multi-extremity.

"No matter what illness you have, exercise can give you so much," she says.

"Connection with people and getting out of the house triggers happy endorphins too.

"Once you stop moving, that's it."

Ms Ross hikes overseas and in the Victorian High Country in all seasons.

She has recently done the Mount Stirling trek and wants to do a three-day Mount Hotham to Falls Creek hike before the snow melts.

"I've always been active but now I try to squeeze in more exercise than I did before," Ms Ross says.

"If I wasn't doing that this disease would have progressed further."

Parkinson's disease is a neurodegenerative disorder that mostly affects the dopamine-producing neurons in the brain. Some scientists believe a combination of genetic and environmental factors are the cause of it.

Mr Sutherland, who has phased out of building and now runs beef cattle in the Upper Murray, says the support group makes him feel less isolated.

About 330 people are living with Parkinson's disease in Albury-Wodonga but Mr Sutherland says they're hard to reach.

"We want to reach out to more young people living with Parkinson's," Mr Sutherland says.

"I think people are worried they're going to be labelled but we're just a group of people who go out to the pub like any other.

"People will find great benefit in it and it would be good if they'd come of the closet.

"Young people worry about their work finding out and they don't want to be treated differently."

Albury small business owner Daryl Ryan first noticed his fingers sticking to the keyboard while typing and his left leg began dragging slightly about seven years ago.

A specialist diagnosed him with Parkinson's disease after watching him walk a couple of metres down a hallway.

"People in the community say: 'You're lucky, you've only got Parkinson's, not that dreaded MND!!" he says.

Today Mr Ryan still isn't sure he has purely Parkinson's disease although knows he has Parkinsonism, a motor syndrome that manifests as rigidity, tremors and slowness of movement.

Despite a poor prognosis from his specialist, his symptoms haven't worsened since his initial diagnosis.

"There are a bundle of unknowns," Mr Ryan says.

"I was given five to seven years yet here I am; I'm frustrated I've wasted five to seven years of being negative around my wife and family.

"My office was growing significantly and I wound it back."

Having been prescribed myriad medications, Mr Ryan says some can have severe side-effects such as compulsive disorders.

He developed a gambling problem within weeks after his dose of Sifrol was scaled up.

"I had never gambled before other than a bet on the Melbourne Cup," he says.

"Suddenly I was betting on the dogs on a Monday night!

"It started to escalate so the specialist took me straight off it. Others in the (support) group have had no adverse effects from it."

Former Border Mail journalist and now marriage celebrant, Mick McGlone, 66, was officially diagnosed with Parkinson's disease in May although specialists have been alluding to it since November.

Diagnosed with alpha synucleinopathy in the Parkinson's disease - Lewy Body disease spectrum, South Albury-based Mr McGlone says it's been a bitter blow.

"You feel like half a man because so many people are fussing over you," he says.

"I'm angry I have to be assisted so often but I have to be careful how I walk in case I fall.

"I have a grandson, Archie, who's two, and I can't get down on the ground with him."

Having given up alcohol five years ago and cigarettes weeks ago, Mr McGlone is now determined to make the most of his life with his wife Cathy.

"In four years I may not be able to be a marriage celebrant," Mr McGlone says.

"I have feelings about loss of identity.

"It's a cliche to say but there are always people worse off than you.

"Allan Border says he'll be lucky if he gets to 80, which is the average age an Australian man can expect to live.

"If I'm lucky I'll get another 10 years; that will take me to 76 and it'll make my grandson 12.

"Cath and I say: 'Stuff it, how often do specialists give someone three months to live and they live a lot longer?'

"What will be, will be."

Mr Sutherland says all people diagnosed with Parkinson's have different symptoms at different stages of their illness.

He generally doesn't have a tremor but has cognitive and motor issues.

"If I get in stressful situations I may get a tremor," he says.

"The happier you can be, the fewer symptoms you have, and the better your life will be.

"I'm at peace with it now. What you consider normal is reset; it becomes your new-normal."

Out on his Gerogery West farm, Mr Mackie is grateful to have his children and grandchildren all living on the Border.

"It's been a silver lining (of Parkinson's), that the whole family is together," Mr Mackie says.

"My grandkids see me struggling with things and the four or five-year-old will say: 'Pop, I'll put your socks on for you'.

"If I didn't have my whole family I don't know where I'd be; I'd be lost without them."

The Albury support group meets on Wednesdays from 10.30am at Nan Nina's in South Albury and has dinner once a month at different venues. They often book guest speakers. They also do walks and camps throughout the North East.

For details visit Albury Young @ Park on Facebook, email alburyyap@gmail.com or phone Wayne Price on 0412 255 211.

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