ROLLING down the highways of western Queensland, former truckie Peter O’Leary could well have had the hit He Ain’t Heavy, He’s My Brother blaring out on his radio and he would’ve sung along with gusto.
Today, that same song could well be his anthem.
The difference is that he’s not singing it but living it.
Two of his brothers have Huntington’s Disease (HD), a genetic, incurable and progressively debilitating neurological condition, and Peter is part of their support network.
Although he doesn’t have the disease himself, he knows it well, having watched his mother suffer with it.
Telling the story often moves him to tears.
Tears flowed recently when Pope Francis gave a special audience in Rome to people suffering from HD, and Peter was deeply moved as he watched the video and listened from his home in Northgate, Brisbane.
“Just to see that, made me cry – just the kindness that was shown, the love, and to see the people crying tears of joy – to see them get recognition, to see him embracing those people,” Peter said.
“He’s the first world leader to recognise them.
“The beautiful thing he said was, ‘Hide no more’.”
The Pope’s words have encouraged Peter to speak up and raise awareness for Huntington’s Disease and the people who live with it.
He said while it was appropriate that cancer research received high priority and millions of dollars in funding, HD research and support needed greater attention than it received.
Peter said funding cutbacks had made the task of the Australian Huntington’s Disease Association (Qld) more difficult in supporting HD sufferers and their families, and encouraging research.
In Australia about 1800 people have HD and about 9000 are at risk.
“This is a horrible, horrible illness,” Peter said. “It was very hard to watch family members’ symptoms progress with the illness.”
Symptoms may include uncontrolled movement, mood swings, emotional dysfunction, irritability, aggression, depression, impaired memory, slurred speech and lack of co-ordination.
HD is caused by a defective gene which results in the gradual destruction of brain cells.
The defective gene can be passed from one generation to the next.
If a parent has the gene, each child has a 50/50 chance of either inheriting or escaping it. If a parent does not have the HD gene the gene cannot pass on to their children, and HD does not skip a generation.
HD symptoms don’t usually begin to show until a person is between 35 and 55 years, and from the onset of symptoms people with HD have a life expectancy of 10 to 25 years.
There can also be early and late onset HD.
A person in advanced stages of HD could be bedridden, unable to speak and unable to feed themselves, and be totally dependent on others.
That was the way it was for Peter’s mother who died just before her 60th birthday.
Peter, 56, is the eldest of her seven children and he started “noticing something was wrong (with his mother)” when he was about 13.
It was a couple of years later when his father broke the news to him.
“We were driving to work one morning, and he said, ‘I think your mum’s sick’,” Peter said.
“Dad knew – his mother-in-law had died of the same illness – even though not much was known about the illness back then.”
The HD gene had passed from Peter’s grandmother to his mother.
“I have two brothers now with the defective gene,” he said.
Peter said he noticed mood changes in his mother because of the illness and “my brother, who is in the advanced stages, where he needs 24-hour care, has had mood and physical changes”.
“There’s no cure and no treatment for the disease but you can treat individual symptoms of it, like the movement, depression and moods,” he said.
People from families with a history of HD can have a genetic test to see if they have inherited the defective gene.
“The choice to get tested is a personal one,” Peter said. “Each of us have our own reasons for getting tested or not.”
He decided to have the test at 49, when two of his daughters were preparing to get married.
He thought that was the right time for he and his wife, and children and their partners to know if he had the gene and what the future may hold.
The test was fairly new then.
His specialist asked him what he would do if he tested positive.
Peter told him he and his wife Sonya would pack up their caravan and head off on a big holiday around Australia – while he still could.
“If I didn’t have it, then my job is to help my siblings who did have it,” he said.
Peter said the worst part of not knowing was that you were always wondering.
“If you lose your temper, you wonder; if you drop something, you wonder; if you get up quickly and you stagger, you wonder; if you’re tired …,” he said.
“You do think all the time, ‘Is it that?’”
Peter said people with HD, because of some of their symptoms, were often misunderstood or misjudged.
“People look at these people (with HD) and they look at them as if they’re drunk,” he said.
“They were functioning people until they’re 35.
“They were functioning people – raising families.
“My mother was a school teacher.
“I’m proud of my mother.
“It (the disease and its symptoms) wasn’t her.
“She was the kindest person. I saw the kindness in her.
“Her dad was the kindest fellow, and he had to see his wife get it.”
Faith is all-important for Peter through it all.
“I don’t think there’s a Sunday goes past that I don’t pray about it (HD),” he said.
“In the last three to four years it’s (my faith) really helped me – through all the adversity.
“Faith helps – just coping.
“I’m blessed I’ve got a great wife, children and grandkids … and I’ve got some really good mates – they help me too.”
Peter said he just wanted to raise awareness about HD and for “people not to be ashamed of it”.
“I’d like to see more funding to help people at the association to do what they’ve got to do.”
For more information or to donate to Huntingtons Queensland phone (07) 3435 4300 or go to the website huntingtonsqld.org.au.