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UrduReported by Joy Mazur, Epigraph intern | Edited and produced by Nancy Volkers
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Podcast Transcript
Joy Mazur: Functional seizures, also known as psychogenic non-epileptic seizures, may look like epilepsy, but are not due to any epileptic activity in the brain.
Families dealing with these functional seizures face stigma, stress, and emotional and financial burdens. Caregivers — who can be spouses, parents, partners, other family members, or others — often experience anxiety and depression, and must manage frustration, uncertainty, and fear.
Shannon Guinard’s husband, Eric, was diagnosed with functional seizures. Here, she shares her experience.
Shannon Guinard: My name is Shannon Guinard and I am 52 years old. My husband has had seizures probably 12 or 13 years now, well, actually more like 16 years, since about 2007. They didn’t start out the way they are today. They seem to have progressed to that. But yeah, life is difficult with them for sure. His name is Eric Guinard. He is 51 and we’ve been married for 34 years. I have a son, Bill, who is 34 years old, a son Matt, who is 27 years old, and a son Justin, who is 16 years old.
Joy Mazur: And so can you tell me about what a day looks like in your life as a care partner and what that entails?
Shannon Guinard: Well, it depends on if he had any episodes or not. For him it’s disabling. Sometimes he can’t get out of bed in the morning when he has had one in his sleep. He always has them in his sleep for the most part.
But really for me, it’s more of a worry, you know, falling asleep next to him at night, it’s hard because I never know when he’s gonna have the next episode. And I tend to grab onto him and hold onto him, so he doesn’t fall out of bed because many times he falls out of bed. Sometimes he has like two or three in a row consecutively, where they just stop and then it starts again. It absolutely looks like a real seizure. We’ve been through a ton trying to identify them, trying to get doctors to listen to us. Trying to show doctors what I’m seeing. It’s very frustrating.
Joy Mazur: And have you found some sort of routine or practices that work best in managing his seizures?
Shannon Guinard: Not really. It really is like part of our normal life now. It’s like just to be expected. Unfortunately for him, they, they hurt. It’s painful, like for your body to get that locked up.
Just this week he was home one day sick and I was sleeping in a separate bedroom because I didn’t wanna get sick. And I woke up to a thump and heard like banging on the floor or whatever. And it was him, he was on the bathroom floor, I guess he had gotten up. It was about 5:00 a.m., he had gotten up and went into the bathroom and ended up falling down and having a seizure. So, when he has ones like that, it’s difficult. He’ll fall out of bed, and he’ll get stuck between the bed and the end table.
I can’t explain it other than it’s extremely exhausting. We’ve been all over the place. We’ve been to all of our local hospitals and every branch of our local hospital. My final attempt was to go to, um, John Hopkins in Baltimore.
And it was there that they basically told him that they were psychogenic seizures or PNES. I have a hard time with that. Like, why now? Why all of a sudden? Why, for what reason? You know? I just fought and fought and fought to try to find answers for him. And then when you don’t end up really with any answer or a good answer, it’s extremely frustrating. I feel that he has them when he’s under any kind of stress, whether it be happy stress, sad stress, angry, physical stress, if he worked out in the yard.
So, you know, you go to the hospital and they hook you up to all these machines to monitor you and they tell you to lay in bed and not even to use the bathroom unless you have a nurse with you to walk you there. And my argument has always been, put him on a treadmill, put him on something, make him do something, make him walk the halls, make him do something because laying him in a bed isn’t gonna bring anything on.
So, it had caused so much financial burden for us because he has not worked so many times because of it. This time I was bound and determined that he was gonna have a seizure while we were at the hospital.
So, I brought a shopping bag full of delinquent bills with me. After they hooked him all up, he got the remote control in his hand and he was gonna relax and just sit back and, and I called the, the nurse and I said, he needs a chair. So, she came in and she brought him a, a medical recliner.
And I was like, oh no, he needs a chair where he could sit up with his, put his feet on the floor. Like he needs to be able to be alert and at the very least, keeping himself awake, you know? So, then I threw this bag of bills at him and I started arguing with him on purpose to aggravate him, and they all thought that I was absolutely crazy. The bottom line was that it worked. It, it absolutely worked. At five o’clock in the morning the next morning, he had a full-blown seizure. But they said that there was no epileptic activity. So that is you know, extremely frustrating when you’re looking at it and it absolutely looks like epilepsy.
Joy Mazur: So, what is your experience working with, you know, physicians or nurses, just what was your experience when you’re in these appointments as the care partner?
Shannon Guinard: Well, initially I feel like they weren’t really listening to what I was saying. And you know, they would send him for these tests, and they would get no results, so. You know, at one point then they’re finally saying, well, you need to go see a psychiatrist, my friend. And I was like, ‘No, you’re not understanding, like I’m seeing this with my own eyes.’ So, at one point we finally put a trail cam in the bedroom so we can document them and bring it to the doctor with us.
And we did that and that didn’t really change anything, they still continued to just tell him to see a psychiatrist with not much explanation of anything. So, it’s frustrating because no one that we have ever seen has had expertise in this field. They’re all epilepsy doctors. No one has had experience with the PNES seizures. I think it’s just as frustrating for them as it is for us because they’re not familiar and they don’t know enough about it.
You get tired and you get tired of fighting, or just trying something new over and over again, you know? My husband’s psychiatrist doesn’t even believe that these seizures are PNES. So that makes it even harder for us to accept it. He has said to him on more than one occasion that he doesn’t believe it. And my husband has a lot of other diagnoses, ailments as well, so it makes me wonder like, is that the right diagnosis and how do we find out if it’s the right diagnosis?
It’s very, it’s just a, it’s a lot. It’s been very frustrating for a long time. And they didn’t, the seizures didn’t start out this way. They started out initially as like zoning out. Then after that started happening, we would be sitting in bed at night watching tv and then he would get some like uncontrolled muscle movement of his arm or his leg or whatever, and then ultimately it just progressed into this full-blown seizure in his sleep. Sometimes two to three times a week. Sometimes we’re lucky and a week will go by, and he won’t have one, but that’s pretty rare. But it’s definitely like beating his body up.
Joy Mazur: So, you mentioned financial burden. Can you tell me a little bit more about that?
Shannon Guinard: After he started having the seizures and we were chasing doctors and not getting any results, he tried several different jobs, um, but he was falling asleep a lot too. So, he didn’t have any luck with the jobs. He started his own business because he figured he could rest when he wanted to, if he needed to go in the van to take a break and just sleep for an hour or two or stop the van on the way to work so he could take, pull over and take a nap because he literally couldn’t keep his eyes open or he felt like something was coming on.
So, he would do things like that. We were on the verge of losing our home. I had to rent it to be able to keep it, moved in with my mom. It’s a lot and a lot of, had a lot of delinquent bills. Still have some, still have some chasing me. But really it did force me to better myself because I went to college and became a social worker, so I’m grateful for that, because I was working just as a teacher assistant in a, in a school district, making very little money. And my husband also tried getting a degree, thinking that maybe if he could get a degree in something that he didn’t have to do physical work, that maybe, you know, his body would respond better to that.
He did go and get his associate’s degree but was really never able to utilize that. Then he started working for someone else again, and that didn’t go well. So, then he decided he would try to do his own thing again. In the meantime, doctors had told him they were gonna pull his license and then never did pull his license, so he kept his license, but he really doesn’t drive. But he decided that he was gonna try his own business again probably about three or four years ago, inspecting homes, because he had his home inspector’s license, which is a big deal, it’s not easy to get. So, he was going to have his own business doing that. And the first day that he went out to give his literature out to realtors and people that he knew, he totaled his truck in an accident. And that was the end of that. We decided that he probably shouldn’t be on roofs, and he probably shouldn’t be driving, so he stopped doing that. And he hasn’t really driven more than a handful of times since, and that was three or four years ago. He works right now, like pretty much out our back door. He drives a ATV there, like through the woods, it’s probably a quarter of a mile. And that’s how he’s able to work. But, you know, his body hurts and he probably shouldn’t be working. We tried to get him disability twice. And because PNES is ‘not a real thing,’ we have been unsuccessful with disability. I mean, he has worked hard and paid into it since he’s 17 years old, you know? So, I feel like he should have it if he needs it, but they say that the bottom line was that he was rejected because he wasn’t even 50 at the time. So maybe sometime in the near future we’re gonna give it a try again because his body is pretty worn out.
He just went to the orthopedic doctor and his shoulder on his right side, he has two tears in his rotator cuff. They’re predominantly on his right side, the seizures, from being so tense all the time with the seizures that his rotator cuff is wrapped in, in two places. So, yeah, so financially is a challenge.
Joy Mazur: So a recent study suggests that care partners of people with functional seizures struggle with anxiety and depression. What has your experience been in that area?
Shannon Guinard: I take medication for anxiety now, and I don’t, I don’t, I probably don’t think that I would be in this position if I wasn’t caring for him, honestly. It’s definitely very stressful. Definitely a lot of worry, in more than one way. I’m not only worried about his health, but worried about our future, finances, et cetera.
It’s so hard to get people to hear you and listen to you, and it should be recognized by disability as something real if a doctor can document, and if you can document like the seizures with video… I don’t know. It just seems like it’s just very unfair.
Joy Mazur: And so how do you also balance the responsibilities of being a care partner with your other day-to-day responsibilities?
Shannon Guinard: It’s terrible, but it’s really just become like part of who we are. Like I said, it’s like becomes to be expected, but a lot of times he gets really down on himself and sad and overwhelmed and sometimes he’ll wake up out of seizures, like crying he just doesn’t wanna do this anymore. You know, like that’s not easy to see. It’s just difficult. It’s very, very difficult. At the same time, you just have to keep on moving. Right. So, you just keep on keeping on.
Joy Mazur: Is there anything you wish that epilepsy professionals would know or do, or just physicians in general, when they see this?
Shannon Guinard: Just that it’s very real and that people need answers. I feel like it has a really bad stigma with doctors, with people in general, just a really bad stigma that it’s in your head, not real. There’s nothing worse that you could tell someone that’s going through that.
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Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 125 national chapters.
Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.
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