Elizabeth’s story

Parkinson’s Disease starts so innocently. In 2010, there were barely any signs of what was to come. It was easy to be lulled into a false sense that this disease was benign – nothing more than a few minor disruptions. My mother didn’t have the version of Parkinson’s Disease that was associated with uncontrolled tremor, so we thought we were very lucky. But she suffered terribly in the last few years of her life – stuck in a frozen body that no longer functioned as it should. Eventually, her mind let her down too. It played tricks on her, regularly taking her back to her childhood during WWII in Britain. Every night, she relived the horror of living in bomb shelters with gas masks, listening to the whistle of bombs, of being evacuated to a strange place, and being separated from family. 

For over 10 years, Parkinson’s disease dropped bombs on our family at regular intervals – whenever we thought things were stable, everything suddenly changed overnight. Hospital trips became a fortnightly event and a short stint in a nursing home showed us firsthand how many flaws there are in that system. We negotiated the complicated aged care system and struggled with the lack of a care workforce.

“If there is any condition that requires more research, it is Parkinson’s Disease. Even a small improvement in the available medications might have given us some relief. If we had known how to prevent this condition, or detect it earlier, we might not have been mystified by the unexplained symptoms, regular falls and strange hallucinations.”


Just arriving in Australia


Retirement trip to Venice


A week before passing

Mum eventually died at home last year on February 9th at 10 am after weeks on nothing but morphine. She was a skeleton at that time with no recognition of her surroundings or her family. But we had already lost the mum we had known all our lives. Many years before, she had gradually lost all her ability to express herself – she could not write (one of her favourite pastimes), she had no voice (at first it was just soft, but then there was nothing), no facial expressions, not even the tic of an eyelid and no movement in her bony limbs. In the last few years, she would ask me who I was and what my intention was in keeping her captive. There was nothing dignified about our journey and no certainty in any aspect of this disease – not in its cause, its diagnosis, its assessment, its treatment, the care that was available or the eventual outcome. 

If there is any condition that requires more research, it is Parkinson’s Disease. Even a small improvement in the available medications might have given us some relief. If we had known how to prevent this condition, or detect it earlier, we might not have been mystified by the unexplained symptoms, regular falls and strange hallucinations. If we had understood the link between gut disorders and brain disorders, we might have deliberately worked on brain-gut health.  If we had known something about the path Parkinson’s Disease would take us on, we would have modified the house sooner and prepared for a time when we would need assistance. If we had known that Parkinson’s Disease would result in mum being declared cognitively incapable of managing her own affairs, we would have had everything in order, including her wishes about life and death. If we had known that she would lose herself, we would have capitalised on technology that could have preserved some of her personality. We would certainly have replaced the carpet that became the source of many falls as mum’s shuffling feet unexpectedly froze on the spot. 

Help researchers, like Professor George Mellick, to solve the puzzle of this debilitating disease by donating to research. The more knowledge we have, the more we can improve quality of life for so many people.

George’s story

Parkinson’s remains such an enigmatic and idiosyncratic condition. It is a degenerative disease of the brain which results in the progressive death of specific brain cells leading to a range of neurological symptoms manifest in problems with movement, speech, cognition, mood and a variety of other complications. There are no definitive tests for Parkinson’s; it is diagnosed clinically by specialists based a patient’s history, symptoms and the exclusion of other potential diagnoses. While there are good symptomatic treatments, there is no cure or definitive way to identify those at risk.

Considered the fastest growing neurological disorder in the world, Parkinson’s currently affects over 8.5 million people, a number that has doubled in the past 25 years and will continue on its devastating path unless we increase our understanding of the disease and how we can best combat it. This will require a multi-pronged and multi-disciplined approach.

There is still great mystery surrounding Parkinson’s: Why do people develop it? How can we improve treatments? Why can’t we stop, slow or reverse the progression of the degenerative process? Why is it so difficult to diagnose? How can we predict the trajectory of disease? To answer these and the many other questions posed by people living with Parkinson’s, their families, carers and friends, we need to start with a better recognition and appreciation of the condition.

Named after the surgeon and apothecary Dr James Parkinson, who in 1817 described the first cases in the Western medical literature, Parkinson’s has historically and mistakenly been passed off as an old person’s condition, characterised solely by movement symptoms of tremor, slowness and stiffness together with postural instability. But it can impact anyone at any age. And there is so much more to this insidious and devastating malady than movement symptoms. As described in Elizabeth’s story above, the most debilitating  symptoms are often the less-recognised, non-motor symptoms, particularly those including anxiety, depression and cognitive dysfunction that are very prominent in many people living with Parkinson’s. Each person’s Parkinson’s is different. It impacts the individual and those around them in unique ways. Treatment strategies and symptom management need to be individually tailored for the best results – something that is often almost impossible for people without access to the full suite of medical and allied health professionals with expertise in the area. Indeed, even receiving a timely and accurate diagnosis remains challenging for many in Australia, let alone those living in countries with less advanced and equitable health systems.

“Parkinson’s Disease is considered the fastest growing neurological disorder in the world.”

An additional challenge is that there remains a stigma surrounding Parkinson’s that results in many people being unaware of the early signs, and those with the condition hiding the diagnosis from friends, families, loved ones and work colleagues in fear of being considered infirm or unable to continue to be taken seriously professionally or personally. This is a devastating situation because early intervention and setting good therapeutic strategy, with a suitable support network, can improve outcomes and lead to better quality of life.

Some interesting facts about Parkinson’s that you may not know:

  • There are more than 100,000 people living with a diagnosis of Parkinson’s in Australia; Around 13,000 new cases are diagnosed each year; these numbers will increase by more than 60% in the next 20 years. 15% of people living with Parkinson’s are of working age and there are more than 2,500 people in their 30s and 40s living with the condition.
  • Up to 15% of people with Parkinson’s may not know that they have it.
  • The total annual economic cost of Parkinson’s to Australia is estimated to exceed $11 billion; this is considerably more than that of Breast Cancer or Prostate Cancer

Our community needs to learn more about Parkinson’s to help us improve the lives of all those impacted by Parkinson’s. You can assist by getting involved. Contact a Parkinson’s organisation near you and show your support. In Queensland, the community based not-for-profit, Parkinson’s Queensland provides information and support to those impacted by Parkinson’s. The national organisation, Parkinson’s Australia, advocates across the country to improve the life and wellbeing of people affected with Parkinson’s and related neurological disorders.

Authors

Professor Elizabeth Kendall is the Director of Inclusive Futures: Reimagining Disability Research Beacon at Griffith University. She has built a research agenda in rehabilitation and service systems for people who are managing the consequences of serious injuries, disabilities or chronic conditions.

Professor George Mellick is a Professor of Clinical Neuroscience who works on all aspects of neurodegenerative disease with an emphasis on Parkinson’s disease. George has, for many years, been an advocate for people affected by Parkinson’s disease. He is currently the President of Parkinson’s Queensland and Parkinson’s Australia, the peak State and National not-for-profit advocacy groups supporting the Parkinson’s community.