UCB spoke with Tim, who has been living with epilepsy since 1979 while he was on active duty. His story focuses on the challenges that epilepsy brings but also shares how his new, positive outlook on life has changed the way he lives. As a member of UCB’s Epilepsy Advocate program, Tim helps to support other epilepsy patients and has been a resource for others during their journey with epilepsy.

Beginning of Q&A

Question: Can you share a little bit about your epilepsy journey?

Tim: I didn’t have a family history of epilepsy, which was surprising to some of my doctors once I was diagnosed. I had my first seizure while I was on active duty in January of 1979. I was driving to work on my motorcycle one day and I remember going blank for what felt like a second, and the next thing I knew I was off on a country road and had no idea what happened. At first, I thought it was a fluke, but it happened again a few months later while I was driving my car down the interstate. In this instance when I came to, I was on a poorly lit street in the city with my car showing signs of collision with a guardrail. I went to the base clinic that Monday, and after being questioned about driving under the influence, I underwent several tests at the hospital. We found out that I had been experiencing temporal lobe seizures, and I was diagnosed with epilepsy. Since 1979, I have been on medication to manage my seizures.

One of the struggles I’ve faced with epilepsy has been the inability to drive due to the severity of my seizures. For example, my new commute to work takes around 1.5 hours on two different buses, which isn’t ideal. However, I’ve decided I can get anywhere by bus, walking, or by asking family friends if they can drive me, so I am finding ways to not let the transportation restrictions of my epilepsy confine me.

Question: We understand that since your diagnosis, you’ve developed an entirely new outlook on life and that you’ve learned some things easily, while others may have taken years to grasp. Can you tell us more about this and how living with epilepsy may have impacted your mental health?

Tim: I became depressed after being diagnosed with epilepsy, and at times, I felt like I hit rock bottom. It became worse when my seizures were in clusters as they were confusing and frustrating to myself and my family. I would have a few good weeks, and then seizures the next week. It got to the point where my children would feel responsible in some way and ask, “What did I do?”. To me, this was deeply saddening, which led to further bouts of depression.

But it’s important to be aware of the effect that epilepsy can have on your mental health so you can ask for help when you need it. After some time, I’ve finally gotten it through my own head that just because I have epilepsy doesn’t mean I can’t live a full and rich life, and I can’t let epilepsy ruin me or ruin things for my family. This shift in mindset has been integral to my epilepsy and mental health journey, and I am thankful for my family and friends continuing to be a strong support system.

Question: Do you think there are helpful resources available to people living with epilepsy that address mental health concerns?

Tim: Yes, absolutely. There are several organizations that have great resources, including the Epilepsy Foundation. They have all kinds of connections and lists of doctors, counselors, etc. They host social gatherings where people with epilepsy can gather to make friends and connect with others who either have epilepsy or care for someone that does. It helps to connect with others that understand what you’re going through, and it’s also helpful to be able to learn about caregiving – you can ask others: “what do you do when you face this situation?” which is an exceptional resource.

Question: What is it like being an advocate for epilepsy?

Tim: The Epilepsy Advocate program has been a great resource for me. I have made some wonderful friends and have been able to stay in touch and communicate through Facebook and other mediums.

On a personal level, a woman I used to work with had a daughter with epilepsy and, at that time, they were in Alberta, Canada, when the daughter ended up in the hospital badly injured from a seizure. She called me while she was living in a foreign country and, luckily, I was Facebook friends with a couple of epilepsy groups; one of them happened to be in Alberta. I sent them a message and they responded within five minutes with phone numbers, doctors’ names, etc. It felt great to be a resource for someone else.

Question: What is one thing you would tell someone who is newly diagnosed with epilepsy and struggling with the diagnosis and their mental health?

Tim: Don’t let epilepsy hold you back from living your life and doing things you normally would. Keep working with your doctor to get the chance of seizure freedom you deserve—or even to gain an optimal level of seizure control.

Living well with epilepsy can be done, but you must make the choice to do so. You have to be determined to not let epilepsy define you or keep you from living a full life. And you can’t do that without support from your family and friends. On rough days it’s encouraging to know they’re there doing everything they can to help. Personally, I have decided that I’m not going to let it hold me back and I’m still going to do things I normally would, such as enjoying hobbies like cycling, where I try to get about 10 miles in every day. Simply put, life goes on, and it’s worth living.

End of Q&A

More Information About Mental-Health Related Programs Sponsored by UCB

A diagnosis with epilepsy can be challenging physically and mentally for families and patients. UCB is committed to supporting patients and caregivers with epilepsy throughout their journeys. Our sponsorship of the Peer Support Program with the Child Neurology Foundation (CNF) further demonstrates our support for patients and caregivers dealing with mental health and epilepsy. CNF offers one-on-one virtual peer support to any caregiver of a child living with a neurologic condition, including those with epilepsy. Trained peer support specialists talk with families at any point, from diagnosis to management of their everyday lives, helping to find resources and navigate the emotional journey all caregivers experience.

In addition to our support of CNF, UCB recently established a Community Health Fund. We recognize that during the COVID-19 pandemic many families and patients have faced new mental and physical stresses. The fund supports the most vulnerable populations impacted by COVID-19 through impact-driven projects and social science research studies, and aims to bring relief to communities. This initiative goes beyond our areas of clinical interest, seeking to meet the physical, mental, and psychosocial health needs of at-risk communities. This includes minorities, children, young people, older people, and those who are socio-economically disadvantaged, uninsured, underinsured, and/or living with certain medical conditions.

To learn about UCB’s Community Health Fund visit: https://www.ucb-usa.com/stories-media/UCB-U-S-News/detail/article/UCB-Community-Health-Fund-Supporting-Vulnerable-Populations-Today-and-in-the-Future