An interview with Sheenagh Bottrell: Surely you are too young
Biography
I was born in Northern Ireland, but I never actually lived there, as my father served in the British Army and our family moved frequently, living in countries such as Nigeria, Malta, Germany, and the USA. At nearly 11 years old, I was sent to boarding school. Initially, I dreamed of becoming a costume designer, so after finishing school I enrolled in art college. However, I soon realized that I wasn’t quite good enough to pursue it as a career. I then began nurse training at The London Hospital (now The Royal London Hospital), where I found my true passion in nursing, while keeping my interest in costumes alive by joining the medical students’ drama group. Later, I moved to Australia as part of a recruitment program for nurses in New South Wales, where I met my husband and decided to stay. I’ve now lived in Australia for 38 years. Like my father, my husband was also in the Army, so our family continued to move around both the country and the world. We have two children, who are now both living overseas.
Can you tell me more about your Advocacy?
Soon after I was diagnosed with young onset Parkinson’s disease, I noticed how often people reacted with surprise, saying things like, “Surely you’re too young for that.” It quickly became clear to me that there was a significant lack of awareness and understanding in the community, with Parkinson’s widely viewed as a disease that only affects older people. I also found that there was limited information and support available for those diagnosed at a younger age. This led me to get involved in advocacy and awareness efforts. I discovered the Shake It Up Foundation and began fundraising and sharing my story through them. I later became involved with Parkinson’s Australia, where I presented at an online conference and served on their Consumer Advisory Committee.
After moving to Melbourne, I connected with Fight Parkinson’s and continued my advocacy work there. I’ve shared my story many times, both in person and online, and became actively involved in support and leadership roles. I started a support group, eventually taking over the Young@Park group for people with young onset Parkinson’s. I organize Zoom meetings, social events, and have secured grants to fund merchandise and a dedicated conference. I now serve as Chair of the Engagement and Advocacy Committee and as a Board Member of Fight Parkinson’s.
Over the years, I’ve participated in fundraising events such as Walk in the Park, where our group raised $14,000, and the 27 for Parkinson’s campaign, where I wore 27 dresses. In 2023, I attended the World Parkinson Congress in Barcelona. I currently chair the Consumer Reference Group for Parkinson’s disease at the Walter and Eliza Hall Institute (WEHI), and even appeared in a video for their Christmas appeal. I’ve also presented to medical students and contributed to multiple research projects, all with the goal of raising awareness, improving understanding, and supporting others living with Parkinson’s.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is raising awareness of young onset PD. I hope that I inspire people and give them hope that its not all bad and that life can go on quite normally. I try not to let having PD be the focus of my life but when it becomes consuming, I know more treatment is required.
What type of goals does individuals with Parkinson’s have when working with you?
I think the effect I have on people is being positive, they see me and think I look normal.
What effect can your Advocacy have on an individual with Parkinson’s?
Hopefully I give a positive outlook
What would you like to see as a future goal for your Advocacy?
I would like to give more presentations raising awareness of PD and particularly young on set before I am considered not young anymore!!
What events do you participate in?
I participate in as many events as I can, online, in person. I am the Australian ambassador for WPC in Arizona 2026. I have written a blog for WPC “Finding my voice”
How can someone get in touch? What is your website?
How can others also become advocates for awareness?
Speak out.
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In your opinion what is the key to effective advocacy?Â
Raising awareness of PD especially young onset
How can we better fundraise to support a cure for Parkinson’s?
Need to raise awareness more to be able to effectively fundraise
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Activities I undertake to help improve and support daily living are Walking/running, Exercise physiologist
Have you had any family members or relatives affected by Parkinson’s disease?
No family history
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If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I don’t think there will be one cure for PD and there are too many variables, but I believe they will find causes and hopefully be able to treat them soon.
Live life to the best of your ability, don’t let PD be the focus, when it does, time for review. It doesn’t define you.
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TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George
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