Disease symptoms parked to restore Vicki’s quality of life

It had robbed her ability to walk without an aid, her strength and her energy.

It had even stolen her smile.

“My life had gotten to a point where I was looking for an electric wheelchair. I could only walk from here to the carport (one room away) and that was it,” Mrs Clowes said.

“If I went for an appointment, we had to park as close as we could. Words cannot explain it, I’ve just been in survival mode for so long.”

As we sat in her lounge room at the home she shares with her husband, Ken, on their peaceful Tatura East cherry farm, the ‘Nan’ of six grandkids tells me about her pain and the path she took for a chance to restore her quality of life.

Her ‘risky’ decision to have deep brain stimulation implantation surgery in January has paid off and much of the movement she’d once thought was gone for ever has returned.

“I’ve got my smile back. I’d lost my smile. I can’t remember when I was last able to smile, it’s been so long,” she said while exhibiting the evidence to prove it.

“The fact I’ve got facial expression, it’s just been a miracle.”

The surgery, while not a new concept, was performed with game-changing new technology, allowing pinpoint accuracy, resulting in more effective treatment, better recovery and reduced likelihood of repeat procedures for Parkinson’s patients, tremors and involuntary muscle contractions.

Mrs Clowes was the first patient in the Southern Hemisphere and outside Europe to use Cabrini Health’s new cradle while neurosurgeons performed the sub-millimetre procedure on her.

The new frame is made of carbon fibre, which eliminates the visibility restrictions on the intraoperative CT scan that were present with the former metal models.

“It allows greater visibility of the electrode placement, which is critical for accurately delivering deep brain stimulation,” the neurosurgeon who performed Mrs Clowes’ surgery, Dr Kristian Bulluss, said.

Cabrini Health neurologist associate professor Wesley Thevasthasan said electrode placement was key with DBS.

“Now, we can reach even the smallest and most deeply located brain structures with confidence, which is great news for patients with movement disorders,” he said.

Looking back, Mrs Clowes said there might have been subtle signs Parkinson’s was looming as early as 2007, but at least for the past 10 years.

The first sign something was terribly wrong was when she returned to swimming after having some time off from her regular 40 lengths of the public pool due to an infection.

She said she’d always been able to tread water, but that day in the deep end, she realised she no longer could.

“Lucky I was near the edge,” Mrs Clowes said.

“I had been struggling with swimming and it all just sort of fell into place that there was something neurological happening.”

She was investigated for multiple sclerosis and cleared.

It was another 18 months before it was confirmed she had Parkinson’s disease, in July 2022.

Her function began to deteriorate quickly from there.

“Day to day, even hour to hour sometimes, there would be changes,” Mrs Clowes said.

“It’s like having a concrete body. The motor’s clicking over, but it’s like a starter motor, it’s just clicking over and not going anywhere.

“You have an underlying fatigue that I equal to being up to 10 babies all night. You can never get on top of it.”

She began making inquiries into DBS around two years after her diagnosis, in August last year.

She said while there was a 40 per cent chance of stroke and brain haemorrhage, the risk of complications with any anaesthesia was similar.

And while the procedure can be done through the public system at St Vincent’s Hospital, Mrs Clowes said she didn’t want to float between the public and private systems after being cared for by Cabrini Health’s neurology team in the lead-up to her surgery.

Now driving again and walking without sticks, she said the investment was well worth it.

“People go on holidays, don’t they? I haven’t been on holidays, long weekends, hardly ever go out for dinner or anything because of this,” she said.

“You can’t look much past today because you can’t plan anything, you can’t walk, you have pain, it’s very debilitating.”

All that is changing now that her function has returned.

Mostly, her revived bucket list consists of travel-based goals, such as visiting the Vivian Bullwinkel nurses’ memorial in Canberra and returning to New Zealand, seeing Darwin for the first time, revisiting Tasmania and taking in Uluru and the Red Centre in the caravan she and Mr Clowes are looking to buy.

She would like to return to her volunteer role at The Lighthouse Project, spending time with disadvantaged kids, but now, having temporarily experienced her own loss of independence, she sees herself working with the elderly as well.

“I’d like to support them for outings down the street for a coffee or to get their hair and nails done,” Mrs Clowes said.

“It’s not going to be long that I’ll be going into a care home.”

The stimulator that sends signals to the electrodes in her brain is embedded under the skin on her chest.

It gets regularly charged and has a remote to alter its parameters according to Mrs Clowes’ neurologists’ instructions after being assessed via telehealth video calls, where specialists can see her walking and movement function via laptop from their Melbourne offices.

The battery in the stimulator device has a life expectancy of 10 to 15 years.

“If I can get 15 years, that’ll be great because it means my granddaughter (youngest grandchild) will be 21, and that’s my aim, to see her 21st, that’s the minimum requirement,” Mrs Clowes said.

“It doesn’t cure the disease, we know that, but we’ve just got to be positive.”

In the meantime, she’ll keep proudly scaling unmoving, broken-down escalators to prove she can, when once upon a time not so long ago, she couldn’t.

∎ For more information about Parkinson’s disease, visit the Parkinson’s Australia website at parkinsons.org.au