Carolyn Armstrong is a retired psychiatrist who has lived with Parkinson’s disease for almost 20 years. She was diagnosed at the age of 46 after she developed symptoms of tremor and decaying movement in the small muscles of her hands which she noticed while playing the cello. Her father also developed Parkinson’s, at the age of 60.
From the start, she has done regular physiotherapy three sessions weekly, which she believes to be essential. She took oral Parkinson’s medications for many years, but by 2019 had quite debilitating dyskinesias.
She is a great believer in the need for people to develop knowledge about their health conditions so they can be effective advocates for their own treatment. She and her sister, who is also a doctor, were reviewing articles about various treatment options. They decided that any therapeutic advance which would provide continuous dopa stimulation to the brain would be highly desirable and she was fortunately advised by the Perron Institute clinic about a continuous subcutaneous infusion trial in Perth.
She has been one of the subjects on the international clinical trial of this delivery method’s safety and efficacy for more than five years now through the Perron Institute’s Clinical Trials program, and is keenly awaiting its review by the TGA in Australia. In her view this is a significant advance, as it is a less invasive treatment strategy than others. It is something that can deal with the dyskinesias which are features of advanced Parkinson’s. In her opinion it is just as effective as deep brain stimulation.
This new delivery system has been very beneficial for her, apart from some mild inconveniences and side effects. The treatment was able to be started at an outpatient visit. Every day, she takes around 15 minutes to apply the treatment by placing a small cannula under the skin in the abdomen and connecting it to a pump worn on a waist belt (about the size of a pager). The requirements are such that patients with a marked tremor of the hands or those with cognitive difficulties would probably not be able to administer the treatment themselves.
Carolyn’s present disabilities include abnormal gait, poor balance at times, slowness, increased muscle tone, weakness and fatigue, poor sleep and some other non-motor symptoms. Despite this, she tries to keep her life as much the same as before Parkinson’s as she can.
She still drives short distances, keeps very socially active, is learning a foreign language, and travels within and out of Australia. She has benefitted from being a member of a Parkinson’s WA support group since diagnosis and enjoys providing peer support to others diagnosed with Parkinson’s.
Slowly over time, her husband has graciously provided increased support, such as cooking their evening meal and doing all the long-distance driving. She and her husband have made significant home modifications and invested in allied health services since her diagnosis with Parkinson’s.
She is very thankful for her recent funding from NDIS, which covers her allied health service costs and taxi use to attend appointments, physio and even social engagements. She remains positive about the future, even though she is sure there are many difficulties yet to come. She has had the pleasure of getting to know many dedicated and caring health professionals and many people with Parkinson’s who are inspirational role models.
She attended her second World Parkinson’s Congress in Barcelona, Spain, in 2023. She said these congresses, which are held every few years, are an inspiring example of the benefits of the coming together of people with Parkinson’s, carers, researchers, and clinicians to present and discuss the latest research outcomes within the context of the experience of Parkinson’s. She said it was great to see a significant number of young scientist researchers from Australia attending and committed to contributing to the field of Parkinson’s.
The next World Parkinson’s Congress is scheduled for May 2026 in Phoenix, Arizona, USA.
Image caption: L-R Alexa Jefferson (Parkinson’s specialist nurse), Carolyn, and Sue Walters (Head of Perron Institute Clinic) in the Perron Institute Clinic