Living and Working with Parkinson’s Disease – Suzanne’s Story
Monday, 20th April 2020

Recent interviews conducted by Shake It Up supporter Maree Faulkner with 21 Australians living with Parkinson’s explored the impact of their diagnosis on their career.  Our Pause 4 Parkinson’s campaign this year shines a light on this important issue.

Living on the mid north coast of NSW, Suzanne Penson is one of those people whose energy and enthusiasm seem boundless.

Suzanne is a full-time teacher / librarian, teaching information and digital literacy as well as being responsible for 2 school Libraries at the high school at which she teaches.  She is also the President of the Mid North Coast Sub-Branch of the Independent Education Union and a member of its General Executive and was recently elected to the Federal Executive of the IEUA.  But there is even more happening in Suzanne’s professional life – she is the co-director of a youth writing festival.  First established in 2017, Litfest2444 grew rapidly to involve over a thousand students in its second year and plans are well underway for the 2020 event, which will include visual, oral and digital contributions from presenters to high school students from across the region.

Suzanne’s level of energy and focus is serving her well in her response to the news she received three years ago.  Suzanne has Parkinson’s Disease (PD), a degenerative neurological condition with no defined cause and, as yet, no cure.

The symptoms of PD vary greatly between individuals and over time. Initially Suzanne noticed that her handwriting was becoming messy. Then she began having trouble controlling her computer mouse and a sudden jerking of her arm.  In 2018 she was shocked to be told she had PD, an experience made even worse by the blunt and negative way in which the information was delivered.  She was told she might have “5 or 10 good years left”.

At 54 years of age, Suzanne was devastated…… for a week. But then she sought out information through Shake It Up Australia, Michael J Fox Foundation, Parkinson’s NSW, academic journals and consulted a broad range of health professionals.  She discovered that everyone’s experience of PD is different and that there are continuing advances in the research and treatment of the disease, including a broad range of complementary interventions and she decided to get on with living her life and managing the treatment of her own condition.

She told her Principal and colleagues, who responded with empathy and practical assistance. Like many people with PD, Suzanne doesn’t want sympathy, she wants acknowledgment of the reality of her situation and the adjustments necessary to enable her to continue with her work and her interests.  The school arranged for an Occupational Therapy assessment, which identified the  changes which have assisted Suzanne in her day to day work.  An increasing tremor and difficulty with fine motor movement are proving challenging, but they are not preventing Suzanne’s continued high level of contribution to her own school, the teaching profession and her passion for developing the literacy of young people.

Her advice to others diagnosed with PD: “Don’t go worst case scenario.  Take control of your own situation” and to the employers and colleagues of people with PD: “Don’t write them off.  Ask them what they need to get on with their work and their lives”.

When the time eventually comes for retirement, Suzanne is looking forward to increasing her engagement in support for refugees, politics and travel.  There is so much yet to be done!

 

Pause 4 Parkinson’s is this April. 

Host a virtual fundraiser and connect with your friends and family to help raise funds for Parkinson’s research. Being in social isolation has opened up lots of new ways of connecting.

Get involved and have fun hosting a virtual event or doing your own personal challenge.

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