No two cases of Huntington's disease are the same - even where the genetic disorder affects members of the same family.
The Collins brothers, Bernard, 62, and Tim, 59, have Huntington's but the degenerative brain disease is impacting both in different ways.
For Bernard, it has affected the frontal lobe of his brain which is responsible for judgement, planning, flexibility and behaviour but physically he's strong and doing a huge amount of exercise to keep up his muscle strength.
Tim hasn't been affected cognitively, but his muscles are quite weak.
Like most Huntington's sufferers, subtle symptoms for both men began to show in their 40s and became more apparent in their 50s.
"He had signs of what you would think would be restless leg syndrome, and his fine motor skills deteriorated slightly but we put it down to maybe needing glasses because his eyesight was not right," said Bernard's wife and carer Jackie.
"Then his balance was not so good when he walked, and once he hit 50 it affected him more with severe temper outbursts that he couldn't control, which was what led to us taking him to the doctor because we put it down to stress - he was always such a placid person so it really out of character."
Bernard was originally diagnosed with fronto-temporal dementia but when they mentioned Tim was also suffering symptoms there was further genetic testing carried out which led to the confirmation of Huntington's disease.
"It was an emotional rollercoaster," Ms Collins said. " My husband was pleased with the diagnosis because he knew he wasn't going mad and he was relieved there were answers, but I looked at my kids and grandkids and worried for them."
Children have a 50 per cent chance of inheriting the defective gene, but genetic testing has confirmed neither of Bernard's children have the Huntington's trigger.
For Ms Collins, the judgement of strangers often adds to the pain the family already feels.
"Because my husband has more of cognitive decline and because one of the symptoms is slurred speech, if we go out for dinner ... he has been at times refused entry in to places and questioned whether he should have a drink when in actual fact he may not have even had one drink in the first place.
"If he relied on a walking stick, people look at that and know he's got something wrong with them but they can't see something physical so they can be quite judgmental.
She said it was important to tell her family's story because many people do not know about Huntington's disease, even though it is relatively common.
Huntington's disease occurs as a result of a faulty gene which causes brain cell death in parts of the brain responsible for motor movement, control and coordination, cognition, personality and emotions. As the cells die, a person's ability to think, feel and move is impaired. The most common symptom of Huntington's disease is jerky movement of the arms and legs and difficulty with speech, swallowing and concentration.
Sadly, there is no cure and life expectancy is about 15 to 20 years from diagnosis.
About one in 8000 people have a faulty Huntington's disease gene.
"There's a lot of publicity for cancer, motor neurone disease and other diseases but because Huntington's is considered a rarer disease, it's not as publicised ... there's not the people out there to raise funds. There are a lot of people working on research to try to prevent it."
May is Huntington's disease awareness month and Ballarat Town Hall clock will light up in blue until Friday to help raise awareness.
Huntington's Victoria chief executive Tammy Gardner said lighting up the Town Hall clock was part of a global #LightItUp4HD initiative which will see buildings and monuments around the world light up in blue during May.
"Lighting up buildings is such an important part of raising awareness about Huntington's and demonstrating support for families in the local area and across the world who are dealing with this disease every day," Ms Gardner said.
"For too long HD has been kept secret in families due to stigma and discrimination. But we know that the more people who understand the disease the more they can accept and support people who are affected by it.
"Along with the Ballarat Town Hall some of Victoria's most iconic buildings will light up in blue this month including the MCG, Flinders Street Station, AAMI Park, the Royal Melbourne Exhibition Centre and the Melbourne Town Hall.
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