Carol – clinical trial participant – essential tremor

Local retired nurse, Carol, has suffered from essential tremor for the past five years, with her condition gradually deteriorating before accessing the TREMOR clinical trial in 2023.

Being able to access this Australian first ground-breaking clinical trial has provided new hope and opportunities for Carol.“I was still working as an aged care nurse when I first developed symptoms. My right hand started shaking first. Initially I worked around it, but gradually it got worse and eventually my left hand started to shake as well.

“It got to a point where I couldn’t even carry a cup of tea to my patients. I went through a lengthy diagnosis process and when I was eventually diagnosed, we couldn’t find medication that worked for me.

“I was at a loss on what I could do, and I thought I would have to live with it, which was devastating. I lost my ability to write. I couldn’t even sign my name,” Carol said.

“I went into the (TREMOR) trial with the attitude that any improvement would be a blessing. I love writing, so to be able to write again would be wonderful.

“One of my hobbies is carpentry. I enjoy making furniture, but I can’t even measure items now, let alone hold a drill or cut anything, so unfortunately that hobby has gone by the wayside since my essential tremor diagnosis. I’d love to get back to doing the things I enjoy.”

Background information

As many as one in 32 people aged between 40 and 60 and one in 18 people aged over 65 are affected by essential tremor across the globe, while 65% of people with Parkinson’s experience tremor at some point during the progression of their disease.^1,2

For these people, the involuntary shaking and trembling of parts of their body can be distressing and debilitating in their daily life; often affecting the ability to perform simple tasks like writing, eating, dressing and self-care.

In an Australian first, Icon Cancer Centre has launched the TREMOR phase two clinical trial which aims to study the effectiveness of advanced stereotactic radiation therapy in the treatment of essential or Parkinson’s related tremor.

Conventional treatment for tremor within the clinical trial setting involves deep brain stimulation, an invasive surgical procedure that places electrodes or needles into the central part of the brain and a stimulator into the chest wall.