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AEP Participant: Rachel Parkinson

December 18, 2023
AEP team member

My epilepsy journey began in 2000 but my diagnosis came after I experienced a generalised seizure at work. I’d been having déjà vu for a while prior but didn’t know why. I used to think I should go and see someone about it, but I couldn’t even really describe what was happening, so I thought a medical professional would just think I was insane. I’d never had a seizure before. The hospital staff referred me to a neurologist, who organised an EEG and MRI.  

My first neurologist was quite blunt. He told me I had brain damage and epilepsy, then asked if I had any questions, but I was in shock. I was referred to Prof. Berkovic, my current neurologist, who confirmed what the original doctor had told me. He asked me if I’d had any funny smells, tastes or feelings and I told him I had experienced déjà vu. He said this was very common. Finally, I felt I had an explanation for what I had been experiencing the past year. From the initial scans and my responses, Prof. Berkovic was able to diagnose me with right temporal lobe epilepsy and as a patient of Sam’s I was able to become a participant of the AEP.

If projects like the AEP didn’t exist, patients such as me, wouldn’t be able to be involved in research that will help other people living with epilepsy.

“Science is amazing. The people who come up with the formulae for the medications are incredible. Most people with epilepsy can lead a full, happy, and seizure-free life.”

Projects like the AEP help us understand how common epilepsy is, and helps participants like me, feel like we’re not alone.  

Rachel is an accomplished musician and loves writing and performing live music. She’s been a semi-finalist in the International Songwriting Competition six times and recently won the State’s Best Kids’ Live Entertainer (Vic/Tas) award. She has written over 200 songs and even wrote a song for her neurologist, Professor Berkovic, to express her gratitude to him for changing her life through his clinical care. You can listen to A Little Part of You, as well as read more on the inspiration behind the song on YouTube, or via this link: https://www.youtube.com/watch?v=wEtIXBdP2gA

Rachel is also the creative director and founder of Little Feet Music, bringing cool, creative, and fun, music education and entertainment classes to little people.  

https://littlefeetmusic.com.au

AEP Participant: Kylie Staats shares her story

Hi, my name is Kylie Staats, I’m 37 years old and I have had epilepsy for almost my entire life. I had my first seizure when I was four years old, and at that time, nobody knew why it was happening.

AEP Volunteer: Luke Wolfe

Meet Luke Wolfe, a recent volunteer for the AEP’s control group. Earlier this year, his close friend experienced her first seizure and was subsequently diagnosed with epilepsy. Watching her navigate this new diagnosis and its impact on her life left him wondering if there was a more proactive way he could help, other than offering care and support.

Meet the team: Seiko Bhungane

Meet Seiko, a Clinical Trials Assistant with the Australian Epilepsy Project. As a member of the Clinical Trials team, Seiko is responsible for the recruitment of both AEP participants and control group volunteers as well as the follow-up interviews with our three participant cohorts (first seizure, newly diagnosed and drug-resistant). “The first call you get from the AEP and the last one, is done by my team and I.”