Hello, my name is Nigel and I have started this course after being contacted by Epilepsy Action.
I had my first seizure about 40 years ago when I was about 10.
My seizures (partial focal) have been controlled on and off but it’s been a roller coaster that I know has a few more twists to come.
My teenage years were a mix of uncontrolled seizures, scans, tests and changes in tablets.
I think that I was lucky to start having seizures so young because epilepsy has just been part of my every day life for as long as I can remember.
I didn’t start driving until my late twenties and have had three spells where I started to have seizures again and had to stop driving.
Adapting to public transport and not being able to get places is very frustrating when it happens but I’ve managed not to get too depressed about it.
Depression is one of the side effects that I know I have and I work hard to keep on top of.
I’ve been seizure free for about 3 years. I know that my epilepsy will make a come back at some point and a change of meds will get it back under control for a few years again.
Currently a mix of Levetiracetam, Lamotrigine, Zonisamide and clobazam are working well.
Messing with my memory and moods but that’s par for the course.
My main reason for joining the course is the way that my current employer has handled my epilepsy.
I’ve worked with several employers over the years and they have always taken a common sense approach. Talk, listen and agree on some minor changes to working arrangements if necessary.
My current employer has started a process driven approach after 3 years of common sense.
Emails to everyone in the company asking them to watch random videos about seizures.
Ignoring my explanations that epilepsy isn’t just about the seizures and generally removing the support structures that worked well for 3 years.
I found this course and hope that I can get enough support and advice to look at my condition in a different way.
I need to be more proactive about things rather than just putting up with it and letting things happen around me.
Along the way I hope that I can help people understand that our condition will always be part of who we are and how to handle the challenges that will come up.
