My experience through the AEP Pilot Journey

“I visited my usual neurologist at the Austin for my refractory epilepsy and he referred me to the Australian Epilepsy Project (AEP) Pilot project. I have been experiencing constant seizures for over 10 years despite being on many different medications.  I was given a brochure about the study with all the details. A member of the AEP called me within a week for safety checks and appointment details”.

“I had to do the cognitive testing via tele-health due to Covid-19. I was sent an email with some questions to answer about my mood and a zoom link for the cognitive testing. It was mostly easy but there were a couple of tests that I found difficult to do with memory. I liked that I didn’t have to travel for this test, and it could all be done from the comfort of my home”.

“Next, I was booked in for an MRI later that week (after standard COVID questions). A researcher from AEP met me at Melbourne Brain Centre and confirmed MRI safety details and other specifics before entering the MRI scanner. I was a bit nervous going into the MRI even though I have done it many times before because I get anxious in small spaces.  The technicians were very supportive and the scan seemed to go quickly. Netflix, a heated blanket and pillow under my legs all made me very comfortable – it was the best MRI I have ever been in”.

“A few days later I was contacted by the lived experience advocate for the AEP, she asked me questions about my experience with each aspect of testing and my feedback on how it could be improved. I didn’t have much to say – it all went smoothly, and I felt safe and supported all the way through”.

“I am looking forward to going back to my neurologist for the test results when they are available, and I am hopeful this advanced testing will help guide my treatment and get my seizures in control”.  AG