A question for the LGS (Epilepsy) Community

Please describe how your or your loved one’s condition impacts your day-to-day life. What frustrations or challenges do you experience? And what have you done to adjust to these challenges?

Answers from the Community

Our frustrations are that my daughter is unable to do a lot of things on her own. She has problems remembering things with all the medicines that she’s on. And she still has a lot of seizures, which we have to adapt to.

Our day-to-day life is always impacted by our daughter’s disorder because her seizures are so frequent. She always has to be watched and monitored, which is frustrating in itself and makes everything more difficult when you want to make sure she doesn’t get injured. She’s also severely disabled physically and cognitively delayed. So our days are always surrounded by making sure she has appropriate care and she is safe in a comfortable area. And I would say, since we’ve dealt with this her whole life, pretty much, we’ve just adapted to her life as we have gone, and we adjust by focusing on her and making sure that her needs are met.

Taking daily medications, multiple times, never knowing what will be the one that will have an onset. Daily changes would be not able to just go very many places due to the reaction for afterwards.

Our son is six and a half years old and does not walk, does not talk. And it is really frustrating at times. Just simply trying to create a normal life for him as best as we can. And when we go places and people don’t really understand why he doesn’t wear shoes, because if he were to be wearing shoes, he would be nonstop screaming or why he doesn’t talk or why he can’t eat certain foods. Things like that are really frustrating just because people simply don’t understand.

How it has impacted our day to day life is that my daughter, who is 12, cannot read or write. And so I am now in a spot where I homeschool her because the school environment was not ideal for her. I didn’t want to place her in a special education classroom, so she was in a full inclusion classroom, but it just became too hard and to a level of frustration for her and for me. Now, a big thing that frustrates me is when people meet her, they assume she’s a typical 12-year-old girl, which I truly appreciate, but when she doesn’t respond in a certain way or doesn’t speak a certain way, people tend to look at her funny or they’ll try to correct her or when it takes her a long time to vocalize what she wants to say because of her speech impediment, people will answer for her. And that’s incredibly frustrating. So how we’ve adjusted again, now we are homeschooling her and it’s worked out really nicely because I can homeschool her at her current level as opposed to a sixth-grade level. So I teach her kindergarten first and second-grade material while still exposing her to sixth-grade work, if you will, with vocabulary and the way I speak to her, but her capacity is much lower.

So my daughter has a rare form of epilepsy and our day to day has been drastically changed. I have a degree in elementary education and a certification to be a principal and I’ve had to quit my job to stay home. Everything revolves around med time and therapy appointments and all those things. So life looks a lot different than what we thought it was going to be.

My son’s unpredictable seizure activity impacts our daily life by never knowing what each day is going to bring. Some days, he has hundreds of seizures. Some days, he has none. So it’s really hard to plan anything, make any trips or any family time. On a daily basis, you just don’t know what you’re going to get, each morning to night. So some days, it impacts it greatly. If he’s having lots of seizures, we’re not able to go and do a whole bunch of things. We pretty much have to stay home. Other days, if he’s having a good day, we might be able to go out, but it’s very unpredictable.

It was just hard because I have epilepsy, and it’s hard because I don’t know if I’m going to ever have a seizure or not. It’s just kind of a gamble, even though I take my medicine. And so it makes me worried. It just makes me sometimes have headaches.

My epilepsy affects my everyday life in many ways. Obviously I have seizures. So that’s a big thing. I’m on medication to control them, but it still has a really big impact on my day to day wellbeing and on the things I can’t do. It affects my driving. It pretty much affects every aspect of me as a person, just because it’s something that I have to deal with.

Day to day, it’s a matter of just taking medication at this point, going to doctor’s appointments to try to keep up with this and changing the type of glasses I have to wear, or how much screen time I’m able to have. Frustrations are it’s just a lot all the time. Adjusting to these challenges, that’s pretty much just being okay with it. There’s not really much else that I can do.

For me personally, in my experiences, having epilepsy really hasn’t impacted my loved ones or my day-to-day life, mainly because my seizures are controlled by medication. For the most part, I would say it doesn’t really impact my life or my loved one’s lives. The frustrations or challenges I would say that we do experience from time to time would just be the anxieties and worries that do accompany just having … For my family members, for having me having epilepsy, there is always that anxiety present, anytime I’m driving, anytime I’m not directly in their sight, they are worried. Anytime I’m in the bath, they worry. And so despite the fact that I have been seizure free for a few years, I think that anxiety will always linger. Despite the fact that I’m 23, my mom and my grandma call me every single day to make sure that I’ve taken my medication, et cetera. I guess the biggest challenge is for lack of a better word, it is more just, again, the trepidations that come with me having epilepsy. One that’s shared between me and my family is more just the concern for when I will have a seizure. Again, despite the fact that I haven’t had one in a few years, that worry, I think is always going to be there and it definitely pops up when there are moments that could be triggered. For example, on nights where I haven’t really slept that well, my family worries a lot that I could have a seizure. That can be very frustrating for me too, as a recent college graduate who really enjoys my independence. To adjust to these challenges, since there aren’t many, we really haven’t done much. I would just say establishing healthy boundaries with my loved ones and just letting them know that I know how to manage my care and that I’ll be okay, but also giving them the compassion that I would want extended to me and giving them the knowledge that I have taken my medication that I am okay and just being as safe as possible.

My son’s epilepsy affects every aspect of every minute of our day. He’s had seizures where he’ll just fall and hit the ground and bruise his face. He’s broken his nose that way. So it’s constantly watching him and monitoring him and making sure that he’s in a place where he’s safe in case something happens.

This condition you’ve asked me to talk about is epilepsy. My epilepsy impacts my day to day life, primarily in the work that I can do. And in terms I hit the limitations and start having seizures if I do too much. It makes life very unpredictable. And I think the biggest frustration is that when I need to do something, I can’t already do it right when I want to do it. Or I come home, such as I come home from a walk or going somewhere else and I have to adjust my plan because I start having seizures and have to stay in bed until they stop. And what I’ve done to adjust this is I only work from home and it’s an on demand by contract. I get paid by the task I do. And that seems to be the best fit for me. I try and limit the things that could cause me to have seizures. And I try and limit things like getting overheated, but life is life. And there’s not much that I can do about a lot of the extraneous circumstances, especially when I have to do things like get up and clean my apartment. It’s just kind of living, getting up at the same time every day, but going with the flow that my body has. I think I’ve had to learn to limit the types of activity that I do. And I’ve had rather doing something like cleaning my apartment in one day. I do things piece what I’ll do where I’ll do laundry, a couple pieces of the apartment cleaning one day and then I’ll finish the rest throughout the week. But I think one of the best things that I’ve managed to do is stay on a strict schedule unless my body absolutely says that I can’t.

Some impacts of my day to day life are that I never know when I will have a seizure or when it would occur. So activities are always a challenge. Frustrations are, I’m always wondering if someone or somebody will see some seizure and judge or call someone and make a big challenge about that. Some challenges I have adhered to is accepting my diagnosis of having epilepsy and accepting that I need to take medicine on a daily basis, which was very hard for me to accept.

Wow. That’s a big question. Some of the biggest frustrations is that as a society we’re expected to change our loved ones and society is not expected to accommodate my child’s needs. So for example, like with this COVID and with school I’m expected to force my child to wear a mask, force him to mold himself to these ridiculous plans that they have, and they don’t even take into consideration his needs. But what he needs to have just a good quality of life or even have basic education. It’s always us having to accommodate society when in reality we really need to change that. My child’s quality of life matters too. And that’s really the biggest frustration I’ve had is that it’s like a disabled person’s life is valued less. And it’s a problem. I really struggle with my kids’ life not being a priority to others or to society, which… And granted, I know, in the end, it’s my role as a caregiver to take care of that. But we’re, we’re such a individualized society and I really think that needs to change.

[PII redacted] seizure disorder is life-threatening and serious, and so we have been constantly dealing with watching him, caring for him. He typically has somebody in the room with them all the time to handle if he’s having one of the variety of seizures that he has. We also have the fear that the seizures are going to escalate, or I’m going to come back even a day that’s been seizure-free. And that fear is constantly there. As far as what we’ve done to deal with challenges, we each separately have had counseling at time to deal with stress response, and we try to keep ourselves balanced, get enough rest, eating healthy and balanced meals, spend time with friends if we can, of course with COVID that’s been difficult. But [PII redacted] 40 and we’ve been doing this for a long time, so it does impact our day-to-day life, but we don’t know how our life would be any different.