Parkinson’s Nurse Specialist Janet McLeod has a mantra when it comes to the progressive neurological condition: “The more we learn, the less we know.” Most breakthroughs tend to lead to more questions than answers, she says.

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Janet has been a Parkinson’s Nurse Specialist and Clinical Nurse Manager with Parkinson’s Western Australia since 1998.

But her interest in the field traces back to when she began her career as a nurse in Belfast, Northern Ireland, in the late 1960s. At the time, on her first ward, the medication Levodopa was being trialled for the condition. All these years later, it is still the most commonly prescribed medicine for Parkinson’s.

Over the coming years, Janet would encounter Parkinson’s during her nursing work. But it wasn’t until much later, after running clinics in a rehabilitation unit, that her passion for working with people with the degenerative condition was “rekindled”.

It led to her current role at Parkinson’s WA, which she has relished for more than two decades.

“Parkinson’s is progressive,” explains Janet.

“It has the ability to affect every aspect of life, so as a Parkinson’s Nurse Specialist we have the privilege of walking the journey with the person with Parkinson’s.”

“I’ve been in this role since 1998 and we still have people who were newly diagnosed then, our nurses are still seeing them.

“Because it’s such a long-term, progressive condition, which affects absolutely everything, including family and partners, it’s a very diverse role and I’ve never had a boring day. People with Parkinson’s are resilient; they have a lot to deal with but they manage to do that with humour and resilience.”

According to Parkinson’s Australia, Parkinson’s is a progressive neurological condition that can affect anyone, yet, the average age of diagnosis is age 65. It is the second most common neurological condition, with latest research estimating that more than 100,000 Australians are living with it.

A complex condition, symptoms begin to appear when the cells within the Substantia Nigra in the mid brain fail to make enough dopamine to control and initiate movements.

The four main and commonly recognised symptoms are tremor, slowness of movement, rigidity and postural instability. There are many other symptoms and researchers are working hard to understand how these all interact, with emerging evidence showing potential links between the gut and brain. .

“It affects every aspect of life,” Janet says.

“From communication to constipation, sleep, mobility, blood pressure, the bladder, depression, paranoia, and apathy; it’s all encompassing. As nurses, we find ourselves often dealing with the non-motor symptoms which often do not respond well to medication. So there’s a very big role for nursing in this condition.”

Australia has about 100 Parkinson’s nurse specialist working across the country. Models of care vary depending on the setting but nurses typically work within movement disorder clinics, research, out in the community, and in Parkinson’s specific clinics. Many nurses also work across the pharmaceutical space, as device assisted therapies are almost a speciality within themselves.

The role grew out of the pioneering UK model in 1992, which trialled five nurses. Two years later, the Government launched a Parkinson’s nurse project, which helped spread support globally.

When Janet first became a Parkinson’s nurse specialist, she says there was no formal training and you learnt on the job and upskilled from your peers. More recently, the Australian College of Nursing (ACN) developed the sole online Parkinson’s Care course for nurses, which nurses wanting to work in the field are encouraged to have completed.

As a community-based Parkinson’s nurse specialist and clinical manager, Janet and her team provide significant education and support for the newly diagnosed.

“Nurses have the ability to educate within the home setting at a level that the patient can absorb and understand,” Janet says.

“We respond to all the queries that people don’t know that they need to know. There’s a lot of explanation around the medications and treatment options available and we monitor for side-effects and responses, either positive or negative, and report back to the treating medical specialists, whereas in clinics nurses will conduct more specialised assessments.”

Janet says community-based Parkinson’s nurse specialists walk the journey with Parkinson’s patients. In the face of communication changes and slowness of thinking, time is often the best gift a you can give a person with Parkinson’s.

As well as direct care, nurses also educate health professionals about the condition in settings such as aged care, hospitals and the general community.

Importantly, there is no set length of time that nurses remain supporting people with Parkinson’s. The general saying at Parkinson’s WA is that nurses are there for the journey, from diagnosis right through to palliative care.

A recent paper, Communication strategies used by Parkinson’s nurse specialists during healthcare interactions: A qualitative descriptive study, which explored the range and use of communication strategies by Parkinson’s nurse specialists found knowledge and use of effective communication strategies to support people with Parkinson’s is crucial for all health professionals working with this population in order to reduce the occurrence of poor healthcare outcomes.

Positively, a deep understanding of how Parkinson’s disease affects communication and experience in implementing communication strategies was reported as contributing to the success of Parkinson’s nurses in communicating with their patients.

Because the condition slows down movement and communication, Janet lists patience as one of the key attributes a Parkinson’s nurse specialist should have. A passion for helping people with the condition is also paramount.

Passion is, undoubtedly, what has kept Janet in the job for so long.

“It’s the people and the resilience that you see.”

“The resilience is also evident in couples because this condition is visible, there are changes in facial expression and communication, and that impacts on relationships.”

When Janet was starting her career as a nurse in Belfast in 1967, she was told there would be a cure for Parkinson’s within five to seven years. More than 50 years on, she is resigned to the fact that it will likely not arrive before she retires. Nevertheless, she says treatments are always developing and there is always new and fascinating angles of research.

Above all, hope for a cure never fades.

For early career nurses looking to get a foothold in the speciality, Janet emphasises the need to gain broad experience across a range of areas, as people with Parkinson’s typically have other co-pathologies.

“You need to have really good general knowledge and awareness of nursing and disease processes. Don’t specialise too soon and don’t limit yourself.”

Looking ahead, Janet is hopeful that more standardised education to become a Parkinson’s Nurse Specialist, such as a university-based course, can be established. She would also like to see the speciality better recognised and ongoing funding secures to boost the number of dedicated nurses across the country.