Supporting a Partner with Epilepsy
Epilepsy News From: Wednesday, March 29, 2023
Caregivers have the remarkable ability to make a real difference in someone's life by simply being there during life’s most challenging moments. Significant others who also act as caregivers for people with epilepsy provide crucial emotional support, as well as take part in everyday epilepsy-related care. They assist in monitoring seizures, administering medication, keeping track of doctor's appointments, and talking through tough decisions. Most importantly, they offer unconditional love, support, and encouragement whenever needed.
Caregiver Spotlight: Preston Reilly
Preston Reilly is an educator and higher education administrator, with a focus in student affairs. Currently, he serves as an Assistant Dean of Students in the College at the University of Chicago. He’s a Chicago sports fan, plays hockey when he has free time, and jokes that he, “enjoys pretending to still play guitar after being in a band in high school.”
Preston is also a supportive significant other to a person living with epilepsy. His wife, Alison, was diagnosed with epilepsy during her sophomore year of college after having two tonic-clonic seizures. Since then, Alison has worked hard to advocate for the epilepsy community, winning the International Bureau for Epilepsy’s Golden Light Award in 2021. Alison has also been a member of the Epilepsy Foundation team for close to four years.
Like Preston and Alison, so many partners in the epilepsy community help one another through the good times and the bad. We are proud to share stories of couples who advocate for the community and take on epilepsy together.
A Meeting Fit for a Romantic Comedy
“Alison and I met in the most cliché way possible at our best friend’s wedding,” says Preston. “We were the only two single people in the wedding party. We hit it off at the wedding and then decided to date long distance while she was living in Washington, DC and I was in Norfolk, VA. We even unknowingly went to the same college for a few years and can trace ourselves back to events and parties we both were at. Our paths just didn’t cross until ten years later!”
Alison shared her epilepsy diagnosis with Preston on the first day they met. Preston states that Alison’s openness about her epilepsy was extremely helpful for him and allowed them to connect on a deeper level. Preston was already familiar with epilepsy through his work with college students and appreciated Alison’s willingness to share her diagnosis with him.
Being a Partner and a Caregiver
Although Preston was familiar with epilepsy and seizures when meeting Alison, at first, he was nervous about his role as a caregiver for Alison and how he could best support her.
“Alison was 8 months seizure free when we first met, so it took a while for me to experience a seizure with her,” said Preston. “I found myself doing research online like anyone would. However, I found the best way to learn was to talk about it with Alison. Learning about her seizure action plan and what I should do to help if I witnessed a seizure helped me feel comfortable.”
As time went on, Preston learned more and more about epilepsy and the different ways it affects everyone. No two people with epilepsy have the same journey. Preston also attends all doctor appointments with Alison’s epilepsy care team alongside her. “I appreciate that our care team knows that epilepsy is something that our whole family lives with, not just Alison,” says Preston.
Throughout their time together, Alison and Preston have shared their experiences with epilepsy with their friends. In turn, they have learned that so many others are impacted or know someone else that lives with epilepsy. They also learned that not everyone is easily able to connect with epilepsy specialists, also known as epileptologists. While Alison received great care from neurologists over the years, it wasn’t until she and Preston started meeting with epileptologists, over 10 years into Alison’s diagnosis, that they fully began to understand her epilepsy. While they still have many unanswered questions about Alison’s epilepsy, specialized testing done by epilepsy specialists has given them new treatment options and most importantly, hope.
In terms of everyday living, Preston considers himself to be in a support role due to Alison’s level of independence. “I always joke with Alison that I feel like a pestering parent when I check to see if she took her medications,” says Preston. “I am here to lift her up when she has a rough day or experiences an unexpected seizure. I help remind her to take it easy if she had a stressful day at work or isn’t feeling well, both of which can be seizure triggers. More recently, her seizures have changed and are only nocturnal. Unfortunately, this makes me the bearer of bad news when I have to tell her she had a seizure overnight. She would have no way of knowing she had a seizure otherwise.”
Since Alison still regularly has seizures, providing an opportunity for travel independence was important for both Preston and Alison. Since relocating to Chicago, a city with strong public transit options, Alison is able to travel freely which helps reduce the stress of having limited transportation options.
Preston's Tips for Caregivers
“Specifically, as a caregiver, it has been helpful for me to have others I can talk to when I need to vent,” says Preston. “This was especially helpful when navigating pre-surgical evaluations, including Alison’s 16-day stay in an epilepsy monitoring unit.
Preston is also grateful to have a strong support system in their corner. Having friends, family, and community to rely on can be vital during difficult times. “It is also important to remember that not all caregivers are parents,” said Preston. “It has been great having a care team that views my opinion as valuable, even when Alison and I weren’t yet married. I am grateful to have always had a voice at the table.”
For anyone struggling with epilepsy and seizures, we encourage you to connect with the Epilepsy Foundation or a local office to receive additional resources.
Preston has kindly shared his contact information for those who wish to connect about topics related to epilepsy. He can be reached on Twitter or Instagram @PrestonReilly or via email at email@example.com.