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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 Research Assistant publishes first paper as lead-author

AEP Research Assistant, Remy Pugh, recently had her first paper as lead-author published in Epilepsia Open. The study explores the cognitive and psychological functioning in adults after their first seizure, but prior to an epilepsy diagnosis or treatment plan. A great achievement, congratulations to all involved.

First AEP Health Economics paper published

The Australian Epilepsy Project’s first health economics paper based on our pilot study data has been recently published. Congratulations to all involved, including Dr Clara Marquina, Emma Foster and the AEP’s Health Economics Lead, Prof. Zanfina Ademi of Monash Uni Pharmaceutical Sciences.

AEP Participant: Chloe Falzon

Chloe was only recently diagnosed with epilepsy after experiencing seizures over an 18 month period. Her initial seizures occurred during sleep and saw Chloe hospitalised a number of times. The results of her scans were inconclusive but additional seizures over the ensuing 12 months lead to her epilepsy diagnosis.