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Banora Point resident Jason Williams recently cycled from the Gold Coast to Newcastle and back via the Clarence Valley to raise awareness of Multiple System Atrophy (MSA-P), a rare and degenerative form of Parkinson’s disease he has recently been diagnosed with. Image: Contributed/Rose E Smith Photography.

Cycle of awareness and determination

Emma Pritchard|

It all started with a tremor in his thumb five years ago.

Fast forward to 2021, and a lot has changed for Jason Williams.

He is no longer able to do a lot of the things he loves.

He can’t surf anymore, he was forced to give up his role as Deputy Captain at Fire and Rescue Banora Point 514 Station, and he found himself battling severe mental health issues.

When the Tweed Shire resident was diagnosed with early onset Parkinson’s disease in his mid-40s, he was shocked, and admitted he thought the condition he describes as “terrible and shitty”, was something which affected older people.

He was subsequently prescribed medication and told he would continue to lead a normal life.

But everything changed.

Physically, his symptoms worsened.

He struggled to sleep, and even contemplated suicide.

With a loving wife, four beautiful daughters aged between 22 and 11 and a 90-year-old mother who also lived with them, he decided to speak up, seek help and started seeing a psychologist.

Describing it as “the first step”, and overwhelmed by the love and support he received, Mr Williams said he wants to make the most of the rest of his life by raising awareness of his condition, supporting charities and education programs such as LIVIN, and encouraging others to speak up when they find themselves struggling or stuck in a dark place.

An enthusiastic sportsperson, he planned to cycle more than 1600km from the Gold Coast to Sydney.

But recently, within weeks of beginning his epic journey, a visit to a specialist in Sydney saw him receive a new terminal prognosis.

He was informed he has a rare degenerative form of Parkinson’s disease called Multiple System Atrophy (MSA-P).

There are less than 1000 cases diagnosed in Australia each year. 

But despite the heartbreaking news, Mr Williams was determined to start and complete his ride, which he called Shake, Rattle and Roll, and fulfil his earlier promise.

Although the Covid-19 outbreak prevented Mr Williams and his support team from reaching Sydney, they travelled as far as Newcastle and stopped overnight in Maclean last week on their return journey north.

Averaging around 70km per day and calling the journey one of the most rewarding things he has done, Mr Williams said it has allowed him to share his story and speak with other people who have experienced similar circumstances.

“I don’t know how much time I’ve got left, but I just want to do whatever I can to help and encourage other people who are experiencing difficulties and mental illness to not be afraid to speak up and ask for help, and to also raise awareness of MSA-P,” he said humbly.

“I want to do what I can while I am still able to.

“What I have is terminal.

“One day I’ll be bedridden and reliant on others to help me, so I just want to do what I can now to help other people.”

A GoFundMe page has also been set up to help Mr Williams and also to support his family.

At the time of publication, more than $54000 had been raised.

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