New treatments, specialist nurses and a funding campaign offer people with Parkinson’s disease new hope .
Thirty-six Australians are diagnosed with Parkinson’s disease every day. It’s time, says Parkinson’s Australia, to make the disease a national health priority.
Steve Sant, Chief Executive Officer of Parkinson’s Australia, says he and his staff have met around 55 MPs and Senators, as well as the Minister and Shadow Minister for Health, since their campaign, Make Parkinson’s a Priority, was launched in March 2016.
The campaign is timely and important. Its focus is primarily securing funding for this all-important research and the provision of nurses.
“We’d like the Government to make Parkinson’s a national health priority at the same level as conditions such as Alzheimer’s and arthritis,” Steve says. “I don’t think people really understand the prevalence of Parkinson’s, or how it has a wide range of symptoms.
“We want to improve the care and support that people with Parkinson’s receive and give them hope for the future. That means access to a Parkinson’s specialist nurse who can tailor an effective health plan to an individual.
“It would be great if every person in Australia who has Parkinson’s could access a specialist nurse. We’d love to see a significant investment in research, too,” Steve says.
Living with Parkinson’s
Monica Hall, who was diagnosed with Parkinson’s at 45, believes the campaign is vital. “Australia’s population is ageing and with that the number of people living with Parkinson’s is increasing,” she says.
“Unless we do something profound to alter their prognosis, it will become a huge health issue. We have to act now.”
Monica, who lives in the Melbourne suburb of Malvern, hopes research funding will bring faster diagnoses. Diagnosis, especially for those under 50, can be a long process. “Getting a diagnosis took four years of feeling as though I was going mad,” she says.
“My daughters were three and five when I first went to a neurologist. What they saw happen to me was just terrible. If we can get a swifter diagnosis and increase relevant education, it would save a lot of heartache.”
Monica also believes in the benefits of specialist nurses. “The fear factor with Parkinson’s is huge, especially as abilities deteriorate. Neurologists need to be booked months ahead.
“To have a specialist nurse for advice would help enormously in the day-to-day living with Parkinson’s, particularly in the times of greatest stress,” Monica says.
The basic symptoms of Parkinson’s disease were first described accurately by Dr James Parkinson in 1817.
Parkinson’s affects more than six million people worldwide. More than 100,000 Australians have the condition, with flow-on effects for their 700,000 family members, friends and carers.
It is a chronic, progressive neurodegenerative condition that primarily affects people aged 65 and over, though Young Onset Parkinson’s can affect people under this age. Although extremely rare, Young Onset Parkinson’s can affect people below the age of 21. Many researchers think that Parkinson’s may be caused by a combination of genetic and environmental factors.
The most common symptoms of Parkinson’s are caused by a loss of dopamine-producing neurons in the brain. New research indicates an abnormal form of the protein alpha-synuclein is involved in the death of these neurons.
The results are motor symptoms such as trembling, slowness of movement, instability and rigidity. A range of non-motor symptoms, including sleep disturbances, mental health issues, pain, gastro-intestinal issues and hallucinations may also occur.
“It’s a very complex condition,” Steve says. “Everyone’s experience with it is different. Two people of the same age, same gender and same lifestyle might present the same way for diabetes, but their Parkinson’s will be totally different.”
This variation in how Parkinson’s presents from person to person creates a challenge for carers. However, effective treatment is available to help reduce the symptoms.
Nurses in the know
Specialist Parkinson’s nurses are trained to develop individualised care plans for their clients.
“A person’s particular set of symptoms, how fast the disease is progressing and the severity of those symptoms are all taken into account,” Steve says. “Then the nurse will tailor a care plan to that particular person.”
The approach isn’t as costly as it sounds. “Parkinson’s nurses save money. They keep people at home and out of hospital. If you’re still of working age, they can help you stay in the workforce.
“We know of a lady in Illawarra (in New South Wales) who looked as though she would have to go into aged care. She couldn’t cope at home alone; her family couldn’t cope. The Parkinson’s nurse worked with her, the family and a neurologist. Now she’s back on track. She can go shopping, meet with friends, see her family and still live independently. I remember her saying, ‘It’s such a lovely life now’.”
Quality of life
Access to advanced treatments, which are not uniformly available in Australia, is also a key focus of the Make Parkinson’s a Priority campaign. Some states offer treatments in the public system, while in other states the same treatments may cost the patient tens of thousands of dollars.
Steve says the campaign is long-term – government fiscal policy is not changed overnight.
“We’ll do a Budget submission in 2017 and show that funding is a cost-effective investment, with savings for the community as well as improving the quality of life for people with Parkinson’s,” he says.
If the campaign succeeds in its goals, it will offer renewed hope for many people with Parkinson’s disease, Steve says.
In the science new research
Clinical trials with new drugs and stem cells discovered in San Diego last year are being conducted at Royal Melbourne Hospital and may result in new treatments. In other research, United States journal Cell has published a study that suggests the disease may be caused by gut bacteria. The study offers hope that probiotics or drugs that work in the digestive system may be used in therapy.
Last year, Neuroscience Research Australia announced that a known genetic marker of Parkinson’s, the protein LRRK2, increases in pre-symptom stages, and this may lead to early intervention treatments for some forms of the condition.
wordsNarelle Harris image courtesyParkinson's Australia