Living and Working With Epilepsy.

About 3.4 million people have epilepsy nationwide, and about 36,000 people have epilepsy in Connecticut.

 Monica Anzelone is the Program and Services Manager for the Epilepsy Foundation of Connecticut. Monica talked about the many programs and services offered to patients and family members at the foundation, including behavioral health. Monica brought along epilepsy patient 32-year-old James who has had some challenges in regard to his employment, but now is currently happily employed. He was seizure free for almost 20 years but has recently suffered from seizures and has some memory issues that sometimes comes from the seizures.

CT Paid Leave can help patients who have epilepsy, and the caregivers who help them. Epilepsy is considered to be a chronic condition. You can take up to 12 weeks away from work to focus on your own health condition or that of a loved one. 

For information about the Epilepsy Foundation of CT go to: Epilepsy Foundation of Connecticut (epilepsyct.com)

For information or to apply for benefits please go to: CT Paid Leave

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Transcript

Nancy Barrow: 0:01

Hello, Connecticut and welcome to the paid leave podcast. The title basically says it all. I'm Nancy Barrow and I will be delving into this new state program and how it can help you and your family. This podcast will give you information you should know about Connecticut paid leave, and maybe just a little bit more. Connecticut paid leave brings peace of mind to your home, family and workplace. Welcome to the paid leave podcast. This episode is about epilepsy. I met someone who had epilepsy and I never knew she had it. But she told me when it was good, it's okay. But when it's bad, and flares up, it can be really bad. Today may be an education for some people who may not know anything about epilepsy. Connecticut paid leave can help people suffering from a chronic condition like epilepsy, it must involve incapacitation, and continuing treatment from a health care professional. When you need to take time away from work to take care of yourself or a loved one with epilepsy. Connecticut paid leave provides income replacement for up to 12 weeks. Now that can be taken all at once or intermittently, so you can work and get treatment or on a reduced schedule, so you can go to doctor's appointments or for mental health appointments, if needed. Joining me today from the Epilepsy Foundation of Connecticut is the programs and services director Monica Anzelone. And she's brought a guest with her. His name is James. He's 31. And he has epilepsy, and he is employed. Welcome to the podcast, Monica and James. Thank you both for being here. Thank you. Monica, let me start with you. Can you just tell me what epilepsy is?

Monica Anzelone: 1:45

Sure, yeah. So Epilepsy is a very broad term that is used to describe a brain disorder that causes seizures. And there's many, many different types of epilepsy. And there are also many, many different types of seizures. And so epilepsy can be categorized by focal, generalized or a combination of the two. And it really depends on where the seizure is happening in the brain. capacity to seize. Some are just more susceptible than others. And some are dealing with other medical conditions that might be bringing on that seizure activity. And so the statistic is that one in 10 people will have a seizure in their lifetime, and 1 in 26 will develop epilepsy in their lifetime.

Nancy Barrow: 2:44

So it's not something that you can diagnose as a child or can you sometimes is it do? Do you know, infants have epilepsy or is it something that progresses over time?

Monica Anzelone: 2:55

Yeah, so yes to both so people can be diagnosed at birth, due to perhaps complications from the birth, for example, or again, other conditions that exist that perhaps are bringing on those seizures. Or see, seizures can happen later on in life. Examples of that might in sometimes it's just unexplained. But other examples might include things like a traumatic brain injury, that might bring on seizure activity and eventually leads to a diagnosis of epilepsy because they are reoccurring, which is one of the key terms used to define epilepsy.

Nancy Barrow: 3:34

Interesting. And can you give me like a little history lesson about the Epilepsy Foundation and what you do? And the services you have.

Monica Anzelone: 3:43

we have a pretty wide range of services and supports for people. The most basic is really people can just call into the office and ask questions, because this is a very, can be a very difficult diagnosis to get. And it can be very complicated and hard to understand. This is not something that most people, the average person knows anything about, really, despite the fact that it's one of the most common neurological conditions out there. And so in addition to providing information about epilepsy, we offer support groups, they are currently virtual. We also do a few different what we call self management programs for people with epilepsy. And James was actually a part of one of those which he I'm sure it would be happy to speak with you about. We're also we also serve as advocates in the community. So for those perhaps that are experiencing discrimination, in perhaps in the workplace or in schools, we try and help provide them with the information and the resources in the community that's needed or even act on their behalf as advocates. We have financial assistance program for those that maybe need medical care that insurance does not cover and sort of the, you know, the list goes on. But those are some of the key things that we provide. One of the other things I didn't mention is education. So education is huge, right? And so we make sure that we are in the community as much as possible to educate people about epilepsy, especially those that are working directly with children or adults that have seizures, so that they know what to do.

Nancy Barrow: 5:23

Can you be seizure free after a diagnosis with medications or with surgery? Can that happen?

Monica Anzelone: 5:31

Yes, yes, it can happen. So this is a spectrum disorder, much like Autism is a spectrum disorder. And most people are familiar with autism, where people can fall on all different sides of that spectrum. Epilepsy is much like that. And so for some people, they can take one medication, and they might be controlled that medication controls their seizures, stops, their seizures, or for the most part, stops their seizures. For other people, they might try up to 10, even beyond 10 medications, and they are still not controlled. So it really just depends on the individual, the diagnosis, are they dealing with other conditions, perhaps things like tumors that are inoperable, that are still causing seizure activity that they just cannot do much about. And then others are diagnosed as at a young age, but it's a type of epilepsy that they grow out of by the time they're adolescence. And then once they reach adolescence, and into adulthood, they may not, they may not have any more seizures, and eventually can get off medication if they're on medication. Wow,

Nancy Barrow: 6:39

a really complicated condition really, really? Well. Hi, James, thank you so much for being here. Why don't you tell me your story, when were you diagnosed,

James: 6:52

so I was first diagnosed, actually, with epilepsy when I was seven years old. And my first seizure that happened on July of 1998, July 31 1998, to be exact. So and one of the things actually, that I wanted to do before was, I just wanted to thank, you know, the Connecticut Epilepsy Foundation for having me here, thank you for having me on this. I also want to thank those who have that have supported me through my through this journey, which include my parents, my parents, my sisters, and along with my extended family as well.

Nancy Barrow: 7:36

I would imagine that you really do need a really good support system, when you got diagnosed, it must have been a scary time for you and your family. It

James: 7:45

was it was a very scary time. And it's one of those things that you know, you don't know when you're going to have one. So for example, I'll give you a really good example. I had a seizure when I was 11 years old. That was my first one or my last one that I had had. And then I went 20 years. And I just had one in July of this past year. And then I went five months after that, and I had another month so

Nancy Barrow: 8:20

are you trying different medications? Is that what the protocol is right now with you and your doctors? And do you have a whole like a whole health team helping you and neurologist and, and other doctors?

James: 8:32

Yes, I have a neurologist that I see. Now we see we used to see when I used to see once a year, I now see like every three months now because of what's been going on. So I really haven't really gone undergone any treatment for seizures. I'm only on medication that really helps control them. But one of the medications that I take is at night and that was prescribed to me to help me sleep because they found that I was having like a sleep disorder. This medication I will tell you has made a major difference, helping me relax and go to sleep at night. And they actually wanted to take me off the medication because I had been sleeping so well. And I had mentioned to my doctor that I would like to stay on the medication for a little while because I had been sleeping so well.

Nancy Barrow: 9:27

Are there certain triggers that can bring on a seizure or you don't really know like some people. I've looked at some videos and some people say certain smells will trigger them.

James: 9:36

One of the things that they found was that I was not getting enough sleep. And one of the things that I do recommend for people that do have seizures is get accommodations put in at your workplace. Use your doctors to help you get accommodations but in the workplace by As one of the biggest things that has helped me in my job is getting accommodations put in the workplace, I get got some doctor's letters, which really helps me with sleep. And, you know, allowed me to be able to sleep well at night, and get enough rest. And between starts with my chef, and ends of my chef before I began work, that is one of the biggest things I recommend for people is that people get accommodations put in because it makes a big difference.

Nancy Barrow: 10:39

Well I would imagine you it would be nerve racking, you were 20 years free of having seizures, and then starting to have them again and working, you would have to say something to your boss, because if you did have a seizure at work, you know, you'd want them to know what to do.

James: 10:57

That's where I had my second one at work. Second thing was at work in December,

Nancy Barrow: 11:01

it must have been really startling for your boss and in other co workers,

James: 11:05

I will tell you, they their response was absolutely terrific. From what I've heard from what my parents have heard, they acted absolutely terrific. And the fact that they notified, you know, 911, they had they had the managers are trained there, for they must be trained there because they acted quick. And they acted very fast, and how they handled the situation, and what they did to help me. And you know, it's one of those things when you have a seizure, you don't know what's going on. Right? So I had no idea what was going on. And all of a sudden I ended up, I ended up sitting, I'm in a hospital bed. And I'm like what's going on here? I know that. And one of my seizures that I had, which I didn't even realize this, I broke a filling in one of my seizures, and I didn't know that until I went to the dentist.

Nancy Barrow: 12:10

Have you gone to support groups? Or do you seek out mental health for this?

James: 12:15

Yes, so I do attend support groups, through Connecticut Epilepsy Foundation, that Monica coordinates that meet once a month. I also did hop scotch with Monica as well. And those who are unaware of hopscotch, it's a great program that helps to develop memory strategies. And this is definitely a program that I would highly recommend for individuals who have a memory problem that is caused by epilepsy. Monica could probably speak more on that thought because she actually coordinates it and I and she was the one that I actually did it with.

Monica Anzelone: 12:58

Yeah and so those, this is a program. It's a it's a very long acronym for, for a program that is focused on helping people with memory and cognitive. In their cognitive health. Basically, this was a program created by Dartmouth Hitchcock hospital. And the intention is to sort of help people that have epilepsy that are struggling with memory sort of regain some control over that area of their life. So we know that there are areas are specific to memory that are out of people's control. Maybe their memory problems have to do with their seizure activity, or maybe their medication side effects. But there are areas that do affect memory that people are aware of things like Jane mentioned, James mentioned, with sleep, not sleeping well. Also mood and stress, anxiety, depression, all of these things can sort of contribute to people really having difficulties or increasing their cognitive and memory challenges. And so this program really focuses on those areas equips people with the tools and strategies needed to sort of manage this this one part of their life, but it's also an opportunity for people to just talk to kind of share with what's going on in their lives and how can we help them sort of work through this and again, like really develop more and better coping skills to help with that. We do have another program specific for people that are dealing more with mental health concerns. And that is titled Project Uplift. We've been doing that now for I'd say, about five years. And that is unlike unlike hopscotch which is one on one, the uplift program is in a group setting. So there are people you know, it acts kind of like a support group, but yet it's also an opportunity for people to learn and develop skills much like hop scotch. And the only criteria is that they're an adult and they have epilepsy. So again, it really sort of uses a cognitive behavioral health model to sort of help people manage some of what they're dealing with. Yeah, and yeah, it really, really just, again gives people an opportunity to share, to hear others experiences, and to to educate themselves a little bit more.

Nancy Barrow: 15:26

so James, when you first started to have seizures, when you said you were seven and 11, did that affect your life like school? Did people treat you differently?

James: 15:39

I think when I was younger, I was more wasn't more aware of it as supposed to now that I'm an adult, and I can understand what's going on and understand that, okay, once I have a seizure, if I have a seizure, I know right away, when I see my doctors, they're gonna tell me, you can't drive for three months.

Nancy Barrow: 16:04

Oh, wow. Okay. I didn't know that. So how do you get around? And do? Do you have friends or support groups who help you get to where you need to go?

James: 16:16

Normally, my parents, my parents had to transport me when I started working again, in August, they had to transport me to work, and from work it is a danger to other people that are out there. If you're driving, and you have a seizure when you're driving, and you're not supposed to be driving.

Nancy Barrow: 16:36

Monica, is that is that something that a lot of people deal with? The lack of independence, I would imagine would be a tough one.

Monica Anzelone: 16:43

right yeah it's kind of like this. Yeah, the one thing sort of leads to the challenges in another area. So if you can't drive, then you might have challenges, maintaining employment. And if you can't, if you can't maintain employment, well, then you might have a hard time paying your bills. And so you know, it's kind of like this, this cycle of really a variety of challenges that are all sort of interconnected for people with epilepsy. So the seizure of itself is just one small part of this diagnosis, and all these other things that James is kind of referring to are just sort of like a part of it and can sometimes even be more challenging than the seizures themselves.

Nancy Barrow: 17:24

Yeah, I would think it would be, you know, Connecticut paid leave, I'll just say one good thing about it is it's here for people like James who are working either full time or part time. And when you're suffering from a chronic health condition, which epilepsy would be deemed a serious health condition by your healthcare provider, you know, we cover mental health visits and doctor's visits. Connecticut paid leave is really great, because it helps with income replacement, when you can't work, you know, and the caregivers to if they have to take time off from their jobs to help drive someone like James. There'll be income replacement for caregivers, too, which I think is really great. Did you know about Connecticut paid leave James?

James: 18:14

I did not. And one of the good things, though, is that I'm glad you mentioned that Connecticut paid leave because I was actually interested in, you know, learning more about that. And what? Like, what that would entail, because now that I'm working again, if this were to happen again at work, what would I do?

Nancy Barrow: 18:41

yeah, so all you have to do is go on to the website, which is Connecticut Paid leave.org. And I can give you all that information. And I'll send it to Monica as well. And it's a really easy process to apply. James, like I said, just go to CTP leave dot org and, you can look all all around the website. And we've made it very friendly for people to apply and get benefits. And Monica, how do you think that Connecticut paid leave can help with patients and caregivers that you come in contact with?

Monica Anzelone: 19:13

yeah so, I mean, there's different lot of different scenarios when we're talking about a work situation for people with epilepsy. So as James mentioned, sometimes it's a seizure that they have, and they need, they need to take some time off, maybe more tests need to be done where they need to go to the hospital for a week's time, let's say or another scenario would be that they have a seizure at work, and their job is uncertain about allowing them to come back. And so sometimes there can be this like several month period where a person is at home not able to work and not getting paid for it simply because of this sort of uncertainty on the employers behalf as far as Should I let them come back to work or not. Which by the way, of course is not is not legal, but it happens all the time for people with epilepsy. So this could certainly fill in that gap to, to help people sort of like, you know, maintain their, their, the way that they're living and paying their bills, and not losing losing out on that until they can figure out what their next steps would be. So for sure this is set will be such a great resource. And we definitely will need to be making sure that our clients are aware of this.

Nancy Barrow: 20:30

well we'll send you all the infographics and all the information you need. And if you need to have a webinar, we'll we'll do that for you, too. We're doing this so we can get people, you know, aware of the benefits that may be available to them under Connecticut paid leave. So I really hope James that you can look into it. And if you need it, we're here for you. Definitely, thank you. What is the prognosis for you now, James,

James: 20:57

I am driving again, I started driving about a month ago. So my process is is that I now see my neurologist every three months now because they really want to track because of what's been going on last July, it's been every like three months that they want me to see. I'm free to basically do whatever I want. Until I have one and then the same thing, whatever I want. I just can't drive. Because it is a very difficult thing to handle. Being that you have epilepsy. And I think one of the biggest things is that if you have if you have epilepsy, and you have seizures, just don't be afraid to tell people up front. Yeah, when you go for jobs, I think that's one of the hardest things that I had to do. And I will give you an example. There was one job that I had, where I did not disclose that I had a memory issue or I had epilepsy until it was too late. In the time period, it was too late, I was already at a point where I either had the option to leave the job, or I had the option that I was going to get terminated. So I walked away from it. I had to make big time career changes, when I was diagnosed with what they call developmental amnesia. I was diagnosed with that on top of having epilepsy.

Nancy Barrow: 22:49

So what does that what does that mean? James tell me what developmental amnesia is and and how that affected your job.

James: 22:58

So developmental amnesia is a memory disorder. It is it was categorized by I went to a neuro-psychologist, I believe is what they're called. They found that I had developmental amnesia caused from what they think is caused from the seizures, which was caused from earlier trauma that had happened in my life.When you have that amnesia, if people tell you something, do you forget right away? Or how does that work? So it would impact a job. One of the ways that it would impact a job would be that if I don't write something down, like if I don't write something down that my manager tells me to do, I'm going to forget it. And that's just five minutes later, I'm going to forget what I'm supposed to do.

Nancy Barrow: 24:01

Monica, do you find that there is sort of discrimination at the workplace for people with epilepsy. And it's difficult when someone may have the same kind of amnesia that James has. And is that pretty common?

Monica Anzelone: 24:17

yeah ya know it's kind of surprising in this day and age that it really discrimination really does still exist, but I think, you know, and that's in many different areas, but for specifically for epilepsy very much. So people this is something that people oftentimes are afraid of, there is still a stigma associated with it. And people often the first thing is they is liability, they think that they are going to be liable if something happens to the person that has a seizure, they're at their workplace. And so that's kind of what it comes down to and then people lose their jobs and employers find ways of getting rid of people that have epilepsy and we just this past year I feel like I've gotten so many calls specific basically about that where they have been fired indirectly, because they had a seizure at work, and which is just it's, you know, if you know anything about the ADA, you understand that, that, you know, that this is that law was created to protect people and people are breaking that law still, you know, on a regular basis. And there, you know, it's, it's difficult, because we're talking about getting lawyers involved to sort of fight this kind of activity. So it's really challenging. But you know, James is a really great example of, it's possible, like he found a really good employer, he found a job that fits him. So, you know, people really can be encouraged, I think, by his example, and testimony that it's possible, just because you have epilepsy does not mean you cannot work in some capacity. And have, you know, a quality of, of life,

James: 25:55

when you can go to work, you can make money as a person with epilepsy, you then feel like you're a part of what the real world is, like. When I was unemployed for eight months and trying to find a job, it was a very difficult thing for me. I did not feel like I was connected to anybody in the world. And the other thing that I did was I actually turned down probably about three or four job offers before I got this job.

Nancy Barrow: 26:34

You you wanted to have the right fit, correct? Yeah,

James: 26:38

I turned down a lot of offers, I applied to a lot of jobs. I went to a lot of interviews. And I found that the job that I have at Staples, works great for me. Yes, I'm a regular employee that works in a retail environment. And I guess that's just where I belong. Because that's it didn't, you know, the other jobs didn't work out for me.

Nancy Barrow: 27:06

right it's fulfilling for you and your independent.

James: 27:10

Yeah, and I think the, I think probably one of the better things that is not only important is you need to find a job that works for you. But you also need to find a team of employees that connect with you well, too. And I have that in both senses.

Nancy Barrow: 27:36

And you're feeling good and healthy because you're sleeping to which yes, that's really important. That's great.

James: 27:42

Getting the rest is very, very important. Going to see your doctors too. I will not stress enough on how important it is to go and see your doctors.

Nancy Barrow: 27:54

Monica are a lot of people affected in Connecticut.

Monica Anzelone: 27:57

Yeah, well, so the number right now is there's over 36,000 individuals have epilepsy.

Nancy Barrow: 28:04

Wow. So you have a you have a lot of work to do. Well, I want to thank my guest Monica Anzelone the programs and service director of the Epilepsy Foundation of Connecticut. Thank you, James, so much for sharing your story. I think it's really important to get all of this information out there. And of course, Connecticut paid leave is here for you. So if you need it, James and Monica, I really would love to work with you and get some more information to caregivers and to the patients.

Monica Anzelone: 28:36

yes thank you.

James: 28:37

Thank you very much. And thank you, everybody for the support. The everything that from like I said, from my family, from my friends, from my co workers, to the people at Epilepsy Foundation. Thank you so much for all that you do. And thank you all for just being there for us.

Nancy Barrow: 29:01

well fingers crossed, you don't have any more seizures. Let's let's hope that you are seizure free.

James: 29:06

I'm pretty sure with all the help that I have from the medical providers and everything that I will be perfectly fine. And just have to watch my stress level and know when to just relax.

Nancy Barrow: 29:23

There you go. For more information on epilepsy, you can go to epilepsy ct.com. And for information or to apply for benefits, please go to CT paid leave.org. This has been another edition of the paid leave podcast. Please like and subscribe so you'll be notified about new podcasts that become available. Connecticut paid leave is a public act with a personal purpose. I'm Nancy Barrow and thanks for listening.