Former firefighter opens up about his mental health struggles after Parkinson’s disease diagnosis

The former fire station deputy received the shock diagnosis at just 45. He’s now planning to cycle from the Gold Coast to Sydney to raise awareness on the mental health impacts of the disease.

Former firefighter Jason Williams is planning to cycle from the Gold Coast to Sydney to fund raise a life changing surgery and help raise awareness on how Parkinson's disease effects young people.

When Jason Williams was in his early 40s he noticed a little tremor in his right thumb.

At the time the Banora Point fire station deputy captain didn’t think much of it but over two years the tremor turned into pain which became restless nights.

He said a doctor and neurologist brushed it off, but the pain continued, and became worse.

He saw another neurologist when he was 45 who gave him the shock diagnosis: Parkinson’s disease.

“Deep inside me I thought I had something like that but it was still a bit of a shock to the system when you get told that,” Mr Williams said.

“(The doctor) said, ‘you know you’re young, you’ll be able to still work, take these tablets three times a day’.

“So I walked out of there with three scripts and she said ‘you should lead a normal life’.”

Four years later, that hasn’t been the case.

Losing his balance and gaining head tremors, Mr Williams can no longer surf, one of his passions, and has had to leave his role as a firefighter out of concerns for safety for others.

Jason Williams on the far right with former colleagues Paul wills, Jamie Bowe, Cyndell McBlain, Adam Rolles and Robert Dascoli after a fundraiser for motor neurone disease in 2018.

“When you’re in that uniform you’re there to serve people and protect the people and help people,” he said.

“I didn’t want to put my crew in any danger by me making the wrong decisions.”

However what has been the most unexpected impact of the disease was his mental health.

“Because it’s a brain disorder, it’s sending signals, it’s in your brain, your brain is not making dopamine which makes you feel good,” Mr Williams said.

“By not producing that, I sort of noticed my effects from the illness were getting worse.

“I got into quite a bit of a dark spot.”

Other day to day activities were also a struggle due to the head shaking, including getting a hair cut and even crossing the road.

“When you’re in a car and you pull up at a pedestrian crossing and I’m shaking my head, the first reaction is sticking their finger up and waving their hands,” Mr Williams said.

“Sometimes people get over it.”

Mr Williams was prescribed antidepressants to help with his mental health – something he’s always been a strong advocate for, even organising a fundraiser for PTSD awareness in 2016.

Jason Williams organised a push up fundraiser in 2016.

However with more medication came more side effects, the most concerning being REM Sleep Behavior Disorder – essentially a form of sleep walking which has seen Mr Williams unknowingly banging his head against walls and hide in cupboards – which requires him to be sedated each night.

“You feel like a bit of a guinea pig,” he said.

But always at the forefront of his mind were his four daughters aged 22, 20, 13 and 11.

“My worst nightmare would be if I’ve passed this terrible sh--house disease onto them and not have done anything to try and find a cure or just done something for it,” Mr Williams said.

It’s why he’s started a GoFundMe page which was two-fold – raising awareness about the mental health impacts of the disease and fundraising for a surgery called Deep Brain Stimulation.

DBS surgery requires a surgeon to place thin metal wires in the brain which send electrical pulses controlled by a pacemaker like device which sits under the skin. Although it does not cure the disease it has been shown to dull the effects of it and require less medication.

The process would require Mr Williams to go off all of his medication before an incision was made into his skull to allow the surgeons to insert the wires into his brain while he was awake.

“I don’t really want to get it done at all, but I’ve got to think of my family, the way I’m tracking at the moment if I don’t do it, it’s not going end well,” he said.

Although the surgery was very new with about 500 operations been performed in Australia, the success rate was good.

But it’s a costly surgery which was why Mr Williams has embarked on a cycling journey from the Gold Coast to Sydney to help raise $100,000 to go towards the surgery along with Parkinson’s cure research and mental health awareness.

The ride starts on June 28 at Burleigh Heads and will go along the Old Pacific Highway. Mr Williams hopes to complete it in three weeks, regardless of whether he reaches the fundraising goal or not.

“At least I can say I put myself out there – I showed the world what it’s like being a young Parkinson’s patient,” he said.

“I was in a space where I really thought what’s the point, it’s hard on the kids, it’s hard on my family, it’s hard on my wife’.

“I do feel determined now, more so than ever, I’ve got a lot of support behind me.

“I’m going to be the Forrest Gump of a push bike and keep riding.”

He said for people asking how they can help he said to share the story so more people can understand what it’s like living with Parkinson’s.

“You can still lead a life even though it’s very hard mentally,” he said.

To donate to Mr Williams page click here.