Epilepsy and Seizure Star: Steven Painter, Steven Painter, the founder of Neurolog.
Our October issue’s Epilepsy and Seizure star is Steven Painter, a researcher, community activist, and patient who took his diagnosis of functional neurological disorder (FND) and non-epileptic seizures (PNES), and turned it into a global resource which is supporting groundbreaking research and professional and community education. For these reasons, we are proud to nominate Steven Painter as our September Seizure Star!
My journey with Functional Neurological Disorder has been a difficult and unpredictable one. At its worst, I became largely housebound and came very close to losing my ability to walk. I have experienced functional seizures alongside problems with movement, balance, fatigue, pain, sensory overload and autonomic symptoms. Like many people with FND, I have learned that the condition rarely stays neatly in one box. Symptoms can change from day to day or even from one part of the day to another and trying to understand those changes can be exhausting in itself.
NeuroLog grew directly from that experience. I wanted a way to record more than whether I had simply had a “good day” or a “bad day.” I wanted to understand what was happening around my symptoms: my energy, sleep, emotions, sensory environment, activity and the different strategies I used to manage things.
What began as a way of making sense of my own health has gradually grown into a much larger community of people recording their experiences. Their generosity and honesty have allowed NeuroLog to support new research and collaborations, while hopefully helping people feel more able to recognise patterns in their own lives.
I am enormously proud of how far NeuroLog has come, but I never forget that it began with me struggling to understand what was happening to my own body and nervous system. I still live with FND, still have difficult days and certainly do not have everything worked out. The difference is that I now feel able to turn some of those experiences into something constructive.
One of the most important things I have learned is that people with FND are not defined by their seizures or symptoms. We are people adapting to an extraordinarily complex condition, often showing far more courage and persistence than we give ourselves credit for.
Thank you again for including me, and for everything you do to create understanding and connection for people living with seizures. It genuinely means a great deal.
https://www.neuro-log.com/
