Jenny Miragaya is a retired nurse and midwife. At the relatively young age of 58, Jenny began to suspect she had Parkinson’s Disease in 2015, but states that she spent most of that year in denial.
She describes watching herself in shop windows, being shocked by the bent old woman shuffling along; holding hands with one of her children and being asked why she was limping (she was dragging her right leg); wondering why everyone seemed to be deaf, unaware that she was losing vocal volume; of becoming emotionally labile, finding it increasingly difficult to meet the demands of work and home; and finding herself increasingly prone to tears.
PD can be defined as a non-life-limiting, progressively degenerative, neurological condition without a cure. It is a chronic condition. Medication and treatment regimens aim to lessen symptoms and maintain physical and cognitive function for as long as possible.
Formally diagnosed in May 2016, Jenny was prescribed Levodopa 100mg three times a day and describes its effect as magical
Now ten years into her PD journey, Jenny is currently utilising one of the so-called ‘Advanced Therapies’. She had a Percutaneous Endoscopic Gastrostomy-Jejunostomy (PEG-J) tube inserted last year to facilitate the delivery of Duodopa gel 24/7. To access this treatment and its ongoing management, Jenny needs to travel to Sydney, as ‘Advanced Therapies’ are not available in the ACT.
Although the Duodopa therapy is not perfect, Jenny says that it is an improvement on the medical management of her PD prior to the introduction of Duodopa. She is hopeful that eventually she may be able to utilise VYALEV, which has been approved by the TGA and the PBS. She will still need to travel to Sydney to access this treatment and its ongoing management.
Jenny will utilise the Power Within to Live Well and to Live Strong with Parkinson’s as she joins an impressive list of guest speakers at the upcoming Parkinson’s ACT Conference on Wednesday 29 October 2025.
To learn more about the Parkinson’s ACT Conference, visit give.hospitalresearch.org.au/event/act-parkinsons-conference-2025
