Tim’s Story: All we have is now

Tim’s submitted his personal epilepsy story to Living Well With Epilepsy to share his own experience.

This is my story about living with epilepsy and MADSAM (multifocal acquired demyelinating sensory and motor neuropathy). I want to share what I am going through to diagnosis the cause of my seizures, and how I found out about the lesion on my right frontal lobe which will require brain surgery.

My experiences

I have learned through my own research that it can be tough to find examples of other people living with conditions similar to your own. When there are so many different things that can cause epilepsy, it can be overwhelming to weed through the information that doesn’t apply. I figured it might be helpful to share my own story to add to what is already out there.

Having had several Tonic-Clonic and Myoclonic seizures throughout my life, I feel many people will be able to relate to my experiences. My goal is to put everything out there, from medicines I have taken to tests I’ve had done so I might be able to help at least one individual on their road to seizure freedom.

All We Have Is Now

As much as we all want to get past some obstacle or hurdle in our life, it helps to live in the now and enjoy all those moments along the way. Spend time soaking in all the good and bad, instead of trying to skip over each moment, sprinting to the end result.

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Jessica K. Smith Founder and CEO; Executive Director

Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.

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