caret icon Back to all discussions

Unveiling the Truths About Living With Epilepsy

We understand that living with epilepsy can be difficult, so we'd like to create a safe space where you can share what's the hardest about managing epilepsy. Tell us, what is the hardest thing about living with epilepsy?

  1. I don't have epilepsy myself. My son has it. He is almost 34 years old. He was diagnosed with Benign Rolandic Epilepsy when he was 5 years old. He cannot drive or hold down a job. He takes so much medicine that he has to set alarms. He also has a VNS. He has changed from his neurologist in Tupelo Mississippi to one in Jackson Mississippi. His dad and I are hoping that something more can be done to make him more independent because his dad and I are older and we are concerned about what will happen to him when he doesn't have us anymore

    1. , caregivers are welcomed in this community! thank you for your bravery in sharing a piece of your son's story - I am sure this is a difficult journey for you all. I hope that his new Neurologist can provide him with a care plan that works for him. It's definitely understandable to be afraid of what's to come in the future, so please know you're not alone in this feeling. Have you tapped into your local resources? Perhaps this might help some.

      I found these articles that I thought might be helpful:https://epilepsydisease.com/community-resources
      https://epilepsydisease.com/resources-health

      Please keep us updated.

      Warmly,
      Kailah H, Epilepsy Team Member

or create an account to reply.