April 11 is World Parkinson’s Day. Its main purpose is to raise awareness and advance research for better therapies and, potentially, a cure for Parkinson’s. But we might also use the stimulus of the international Parkinson’s Month, Week and Day to check on what’s happening with advocacy and organisation around Parkinson’s on the home front.
Parkinson’s 101
The condition affects about 10 million individuals worldwide, and 200,000 in Australia. In Australia thirty-eight cases are diagnosed every day. Twenty per cent of ‘persons-with-Parkinson’s’ are under 50 years old and 10 per cent are diagnosed before the age of 40.
In Canada it affects 1 in 500, with over 100,000 Canadians living with the condition and approximately 6,600 new cases being diagnosed each year
Parkinson’s is a progressive, degenerative neurological condition that affects a person’s control of their body movements. As is well-known, the symptoms and their progression vary wildly among those affected. Parkinson’s UK reports that there are over 40 symptoms, with The Big Three being tremor (shaking), slowness of movement, and rigidity (muscle stiffness).
There are also numerous non-motor symptoms such as sleep disturbance, constipation, voice and speech malfunction, and loss of sense of smell. Because of a compromised autonomic nervous system, people with the condition can have poor control over body temperature.
Some of these non-motor symptoms can pre-date motor symptoms by as much as a decade.
The strongest domestic organisation dealing with Parkinson’s has been Shake It Up Australia. It was founded by Clyde Campbell in 2011 and he is still at the helm.
There are six State-based bodies, and a national body, Parkinson’s Australia.1 All six are independent from each other and from Parkinson’s Australia. So the latter has been overshadowed (some would say neutered) by the former.
This is the archetypal challenge for national bodies in a federal political system. For a national representative body to be successful the state bodies need enthusiastically to cede a certain amount of power, authority and resources to it.
The struggle for Parkinson’s Australia1
There has been a Parkinson’s Australia for a long time, but it has never had the support and close engagement of the populous states. It has therefore been poorly funded and unable to build a strong national presence.
In 2012 the CEO of Parkinson’s Australia was Daryl Smeaton. As a senior public servant Daryl had been an integral part of Prime Minister John Howard’s successful gun buyback scheme in 1996-97.
In 2012 Daryl took the national conference of Parkinson’s Australia to Brisbane. It was opened by Australia’s first female Governor-General, now Dame Quentin Bryce. (She was kind enough to stay for the opening address I had been invited to present.)
More recently the head of Parkinson’s Australia was Steve Sant, after his time with the Rural Doctors Association of Australia.
For much of the time Parkinson’s Australia has been a body without representation from Victoria and New South Wales. Other jurisdictions have battled valiantly to have the organisation become a real umbrella group. But it has been holey and not entirely successful.
Its website advises people who are seeking information, resources or advice to visit the independent Parkinson’s organisation in their home state. In the case of the ACT (where I live) the running is being taken by a South Australian entity: the Parkinson’s section of the Hospital Research Foundation Group.
The larger state bodies tend to be abut service provision rather than political advocacy and lobbying. Parkinson’s NSW, for instance, provides counselling sessions, information and education sessions, and help-line calls. And it was in NSW – a long time ago – in which specialist Parkinson’s nurses were first road-tested with great success.
A new Alliance
The Parkinson Alliance was active from 2004. It closed its doors on April 30, 2023. It completed over 35 patient-centered research reports covering motor and non-motor symptoms. It supported over one hundred research projects, including many on exercise. It put its money where its legs were by managing the Parkinson’s Unity Walk from 2001 to 2021.
Even when shaken, Nature apparently abhors a vacuum. The space vacated by that Alliance last year has been filled this.
On 26 March 2024 Shake It Up Australia launched the National Parkinson’s Alliance. Itaims to build a network of groups to lead nationwide advocacy efforts. It has urged the Federal Government to allocate an initial $400,000 for the development of a National Parkinson’s Action Plan.
Curiously, the members of the new Alliance, as listed, are ten individuals affiliated with universities and research institutions. Just one state Parkinson’s organisation is mentioned: Parkinson’s NSW.
This new organisation is described as “a collaborative initiative bringing together the stakeholders living with Parkinson’s and leaders from those backgrounds to work towards aligned outcomes for the Parkinson’s community”. CEO of the Alliance is Vicki Miller.
On 26 March 2024 it organised the Australian Summit to End Parkinson’s.
About thirty people living with Parkinson’s from across Australia attended alongside members of the Alliance and the research community.
Both Parkinson’s Australia and the new Alliance made pre-budget submissions to the federal government.
Enough of this melancholia! Why not read the piece on my blogg (aggravations.org) entitled Parkinson’s brings out the best – in other people.
It tells of some of the human spirit and kindness that no mere chronic condition can put down.
Go to: www.aggravations.org [August 2022]
1 to try to avoid confusion, the name of the organisation is italicised.
