IIE PACE Podcast: Episode 3
IIE PACE Podcast: Episode 3
Epilepsy Supports & Services
Guest Speaker: Michael Radell (He/Him)
Recording Date: March 26th, 2024
[Announcer]
We acknowledge with respect the Seneca Nation known as the Great Hill People and keepers of the western door of the Haudenosaunee Confederacy. We take this opportunity to thank the people on whose ancestral lands The University of Rochester currently resides in Rochester, New York. To learn more about ancestral lands. Upon which we live and work. Please check out native-land.ca
[Ray Watts]
Hi, this is Ray Watts. I'm a current co-chair of the Ideal Committee. On the podcast today, we're going to have Michael Riddell with us. Michael's the education coordinator and camp director for Epilepsy Alliance West Central New York. Part of empowering people's independence or EPI for short. Epi empowers people with brain injuries, epilepsy, developmental disabilities to live the life of their choosing. EPI is headquartered here in Rochester, New York, and serves people in 22 counties from the western, central. Southern tier and finger lakes regions of New York State. Michael has worked at EPI for 25 years and has been in the human service field for more than 30. He runs several programs that benefit people and families who are affected by the disorder of epilepsy. Including providing seizure recognition and response training to schools, employers, community organizations, epilepsy support groups, and a variety of youth programming, including Teen Epilepsy Weekends. And to Learn to Swim program. He also directs two of his favorite programs, Camp Eager and Camp Coast. These are week-long residential camp experiences for children and young adults with epilepsy. Michael also has the disorder of epilepsy but has been seizure-free for almost three decades. To get started, Michael, could you please share with us kind of your path to this role? And what the mission is at empowering people's independence.
[Michael Radell]
Sure, Ray. When I was younger as a teen, I was diagnosed with epilepsy. I had a seizure when I was 16. And then the diagnosis of epilepsy came when I, about a year and a half later and over the course of the next eight years, I continued to have different seizures, all during the evening, during the nighttime hours while I was sleeping. So, I do adjust to a different lifestyle. I had to learn the importance of taking medication to control the seizures. I wasn't able to drive because obviously you wouldn't want to be behind the wheel of a car and have a seizure that could be pretty detrimental to either myself or others on the road. The social implications were a little rough and I had to understand the disorder and how to explain it to other peers and faculty and staff at my school that I attended but when I was about 24, my seizures ended. And I came back to Rochester from being at college and I moved to the Albany area, and I got involved with a nonprofit organization there And I worked there for about four or five years, and I really fell in love with the nonprofit human service world. And I moved back to Rochester, and I got a job here at our organization And I was at the time working as a service coordinator or case manager. And then I got into employment helping individuals who have the disorder of epilepsy find work out in the community. And support their needs in that program. And then I kind of found my niche in community education. And we go out to schools, businesses, agencies, sometimes even families’ homes. And I teach and I talk about the disorder of epilepsy. And we also run a couple of summer camps where one weeklong program. For children and adults with epilepsy, and it gives them the opportunity to be kids or be young adults and enjoy the things that everybody else in the entire world gets to enjoy in the summertime. Our mission at EPI is to empower people with disabilities neurological and chronic health conditions to pursue the life of their choosing. And also, we envision a community where everyone is valued and can thrive. So that's where you know my story, how it brought me to working in this field and specifically with people with epilepsy.
[Ray Watts]
Well, thank you for sharing that and the program just sounds so interesting to me. My wife suffers from this condition as well. And a lot of this, you know, kind of your experience that you've shared sounds very familiar as far as some of the challenges. You know that she's faced and continues to face. And, you know, I know that she uh you know we spoke about, I spoke about this a little bit with her you know kind of in preparation or not really in preparation, but just to kind of let her know because I thought she would think it was interesting and you know she had no idea about any of these Any program like this, any services like this when she was younger. And I mean, just absolutely would have loved to have the opportunity to you know participate in some of the things that that you're offering so I mean, that's I mean, this is great. It just, this is so… impactful work i know like she struggles all the time with Particularly, you know, being an adult who's not able to drive it's very isolating. In a lot of ways and, you know, she's often lacking kind of those social connections. It's really difficult so to think about some of the kind of social programs as well. And also thinking about you know she's told me a little bit about kind of conversations she had with educators when she was like still in high school and guidance counselors and that kind of thing that we're just really. Kind of unimaginable the things that some of them would tell her just like limitations just like you know they asked what do you want to be when you grow up type of question and you know, she gave him an answer. Just like, oh, you're never you're not going to be able to do that. And that was even someone at a little more specialized program kind of meant for you know helping people with disabilities so.
[Michael Radell]
Yeah, epilepsy is often misunderstood, and it carries a stigma. There's a lot of misconceptions. And myths associated with the disorder. And part of my job is to dispel those myths and and now let people know that people with epilepsy are just like anybody else. They just happen to have a seizure every once in a while, and it shouldn't stop them from accomplishing their goals. Yeah, well said. So, one thing we wanted to talk about you know kind of the next thing we had in mind What can you tell us about, you know, how can we best support individuals with epilepsy or anyone who might have a seizure in our presence.
[Ray Watts]
Sorry, I just wanted to add, you know, in asking that, I was kind of thinking about my own experience where I have a good sense of my wife's tells because I'm with her all the time. I've been with her as, you know, kind of her. Condition has evolved, the types of seizures she has, the things that seem to trigger to have changed a little bit, but I Even I, you know, someone who I lives with someone who suffers from seizures and deals with that all the time. I really don't have any idea. Kind of a, you know, general things to watch out for so I think this is great as far as Really? Anybody can benefit from this. This knowledge.
[Michael Radell]
Well, then you're in luck. I will share with you and also the other people listening. I thought maybe that the, you know, defining some of the terms would be a good way to start our discussion today. And talking about how common epilepsy is. A lot of times people don't realize how the prevalence of epilepsy is very common. The causes you know some of the different types of seizures that people can experience. A lot of times when people think seizure, they only think of one type of seizure and there's several different types of seizures that people can experience. Knowing exactly what to do for someone who's having a seizure that is very important, whether it's in school or whether it's in an employment setting or just out in the community family members, loved ones need to know what to do or how to care for their loved one if and when they have a seizure. Talking about the different types of treatments that are out there available for people with epilepsy. So, if you don't mind, I'd like to just get going with that and talk a little bit about what the disorder of epilepsy means. A seizure is an event and epilepsy is the disease involving reoccurring unprovoked seizures. A lot of times people can have a seizure, but it doesn't necessarily mean it's epilepsy. Epilepsy is reoccurring, unprovoked events. And these seizures can happen without warning and at any time in our life. The actual seizure is the symptom of the disorder of epilepsy. So, if you experience multiple seizures. For no apparent provoking cause. That's typically what is epilepsy. Of course, it takes a neurologist to diagnose someone with a disorder, but the seizure is actually a brief excessive discharge of electrical activity to the brain that alters either the movement, the sensation, the behavior or awareness. Are one or all of those things when someone has an event like that. And it can happen in it. In multiple parts of the brain or it can happen in one focus focal part of the brain. It depends on the individual and where those seizures are coming from in the brain. It is a pretty common disorder, like I said. They say one in every 26 individuals will be diagnosed at some point in their life. There's about 3 million Americans that have the disorder of epilepsy. And about 65 million people worldwide. There are some people in our history that have had epilepsy that accomplished some really great stuff. Lil Wayne, for example, Prince had epilepsy. Vincent van Gogh, Agatha Christie, the mystery Writer. Neil Young, the rocker. He had epilepsy. Lindsey Buckingham, and also Tiki and Ronde Barber, former football players. So, what does that tell you about people with epilepsy is they can accomplish some really cool stuff, even though they have the disorder of epilepsy. How do people get epilepsy? What are some of the causes associated with the disorder. 30% of the people who have been diagnosed with epilepsy do know the cause. There's an identifiable reason why they start having these seizures, whether it could have been brain trauma or brain lesions, possibly a tumor lead poisoning could possibly cause epilepsy. Infections of the brain such as meningitis or encephalitis, measles. You could even have brain injury at birth and having, you know, started having the seizures at a very, very young age. The frustrating part is about 70% of the people who have the disorder of epilepsy There's no definable cause. There's no known cause. It's called idiopathic epilepsy, which means they just can't determine what caused the seizures to start. I have… the cause of my epilepsy is unknown. The doctors did a family history and tried to probe at how or why these seizures could have started when I was a teenager, and they never came up with an answer for me. So, I'll never know, but it was a period of my life where I had several seizures going on and I had to adapt each and every time I had the seizure. I don't remember the seizures occurring. I was most of the time sleeping prior to my seizures but afterwards It took a little while to get back to my baseline I might not be able to go to class the next day because it was very physically difficult to deal with after the seizures. My muscles would be sore, and I would be nauseous a little bit and just kind of out of it, I'll say. So, I experienced what they call generalized nocturnal, tonic-clonic seizures. And so generalized meaning that the seizures happen in all parts of my brain. And it all happened during the nighttime while I was sleeping. Well, that's the case for me, but sometimes people have seizures any time of the day or night. It's a very random event when it happens, and you sometimes don't know it's coming. And the term I referred to last was tonic-clonic. We used to call it grand mal seizure. The Grand Mal doesn't really tell you a lot. It means big bad. But tonic-clonic is exactly what's going on is tonic is the stiffening of the arms, legs, and joints in the clonic part, or clonus is the shaking. So, it's very rhythmic movements back and forth, arms and legs. And it can last typically one to three minutes. They've been known to last longer. And if that happens, sometimes we want to make sure that that person gets seen by a medical professional pretty soon. But with someone who has epilepsy. There's really no reason to call 911 every single time someone has a seizure. A lot of times people would diagnose the diagnosis of epilepsy, they have seizures, you know, seizures happen. But it's when it lasts for a really long time, we want to get it looked at.
[Ray Watts]
Really quickly on that point. The kind of like… I don't want to say words of wisdom exactly, but kind of the guideline that that I was given by my mother-in-law basically of the amount of time that's like, okay, if you pass this mark, this is where you should call the ambulance. What she gave me was five minutes. Would you say that that is like a good guideline, or it depends on the person or the situation more so?
[Michael Radell]
So generally speaking, yes, five minutes for a tonic-clonic seizure would be an appropriate time to call 911. If it lasts too much longer, there's a possibility or chance that, you know. That that person could sustain some injury to the brain. But the typical length of seizure is one to three minutes. Now the neurologist will probably give the patient specific guidelines of when they would want 911 to be called. But generally speaking, we always say about five minutes. Another type of generalized seizures is the absence seizure. Formerly known as Petty Mal or Petite Mal. And again, Petty Mal doesn't tell you a lot. It means a little bad. But absent seizure is just that. If you're absent for work or absent from school, you're just not There, when someone's having an absent seizure, they kind of just have a gaze stare. They stare out into space for a few seconds, maybe 10, 15 seconds at the most. And these types of seizures can last quite a long time as far as they can have several of them throughout the course of a day. So, they're not physically taxing, but they certainly do interrupt that person's day. And learning is difficult sometimes when they have absent seizures. And then there's also the focal onset seizures, which means it comes from one part of the brain. Common types of focal seizures are simple partial and complex partial. The thing about the simple partial seizure is the individual is awake or aware throughout the whole entire event. And they might not be able to articulate at the time what's going on during that seizure or they might not be able to move their arm the way they typically would because they're in the midst of that seizure. The complex partial seizure, again, it comes from one part of the brain. And it involves a lack of awareness. So that person can do some strange, bizarre behaviors such as picking up their clothes or lip-smacking rapid eye fluttering, even wandering, like walking around during this seizure. And a lot of times in the people in the community get confused. Because they don't think of it as a seizure. They think of it as their person is maybe high on drugs or drunk or something like that, but they're actually in the midst of a neurological event, a seizure called the complex partial seizure. And so those can last a little bit longer. They're not very physically taxing, but they can last several minutes. And so, what you have to think of when you're thinking of seizure first aid is, again, it depends on the type of seizure that person is experiencing. There's really not a lot to do with that generalized absent seizure because they just kind of their pause and activity with a blank stare but the tonic-colonic seizure, we kind of use the TRUST method It's an acronym for each step of seizure First Aid. And T, the first T of trust is turning the person on their side. We want to turn that person on their side So that if they vomit possibly during the seizure and they're on their side rather than on their back facing up, they won't choke. There's a big myth too that if someone has a seizure, they might swallow their tongue. That is very far from the truth. You can't swallow your tongue. But what does happen sometimes is if you're having a seizure, you lose control of your jaw muscles and that tongue can float to the back of the throat and block the airway. If you're on your side, the chances of that happening are much less. The R of trust is remove any objects or glasses You know, you want to take your glass or have someone take the glasses off So they don't injure themselves. During a seizure, you don't want to try to move a person around too much when they're having a seizure because you could hurt yourself or you could hurt them doing that. The U in trust is use something soft under their head. Just because if someone's having a tonic-clonic seizure. They are convulsing, you know, and that includes their head. So, they might be hitting their head pretty hard on the floor. And sustaining more injuries. So, you want to make sure that either your lap or a pillow, if you have one handy, or a sweatshirt or anything to comfort that person while they're having a seizure. Staying calm is very important. I know it's easier said than done, but if you can stay calm during the seizure, the patient or the person is going to be much better off. And it also helps to talk soft. Awfully or calmly. The person who's having a seizure might not hear you or probably won't hear you. During the seizure, but it helps to have that calming effect over yourself when you're when you're caring for someone who's having a seizure. And then the last one is tea. Is time the seizure. You don't want to stand over the top of the person with a stopwatch. But you want to make sure you note the time of the seizure starting and then take a look at the clock again when it's over. Just so you know, you know, if you if you do have to go into kind of the next phase of seizure first aid by calling 911. But it's our hopes that people don't have to call 911 every single time. They can just have the seizure. And recover. There are three phases to these seizures. Most seizures include these. Is the period of time right before the seizure It's called an aura, A-U-R-A. And some people experience this other people don't. And it's kind of helpful if you do because you know it's coming. You can get yourself to a safe spot to have the seizure. And then, you know, that's the first phase of the seizure. And then the actual seizure. Or whether it's a partial seizure or the generalized seizure, that happens. And then the postictal or post-seizure phase is after. And that sometimes can last a few seconds to a couple of days for that matter. You know, the person's getting back to 100%. Getting back to their baseline. And a lot of times, depending on the type of seizure, it can take a while. And it's pretty physically exhausting. To have a seizure and especially the tonic-clonic and the complex partial seizures. So, there's some treatments out there. There are some really great things that the doctors can prescribe, the neurologist can prescribe the patients to help minimize the seizure activity that's happening There's been a huge flux in medication. Since I was diagnosed. So, when I was diagnosed, there was maybe five different formulations of medication that could help patients with controlling the seizures. And a lot of those were, you know, older school medication They had a lot of side effects. So now they have a lot more. There’re many more choices for people to take with the obviously the advisement of the neurologist. To control these seizures that don't have the difficult side effects that once had many years ago. There’re other types of treatment as well. There's the ketogenic diet, which is very well known type of treatment for people with epilepsy. It is a high in fat diet. It's based on the fact that burning fat for energy has anti-seizure effect. And if it's executed well. And the patients stay dedicated to the diet. It does have dramatic effects in reducing seizure activity. There's a couple of devices out there now. The vagus nerve stimulator and the responsive neurostimulation devices. They're both devices that are implanted. Either in the chest or in the actual brain and they provide a stimulus like an electrical impulse to the brain and overriding seizure activity. It's quite remarkable watching these work and it interrupts the seizure activity when someone has them, of course. Of course, there's surgery and you have to be a candidate for surgery. A lot of times a person who has partial onset seizure might be a candidate for surgery and the neurosurgeons can do some really spectacular stuff now. Technology is on our side, and they can go in and either remove or disconnect a little small portion of a person's brain and those seizures can go away and hopefully go away forever. So those are just some of the things. That I wanted to kind of go over as far as getting the word out about what epilepsy is and some of the terms and some of the important things about the medical diagnosis that people should know.
[Ray Watts]
Going into, you know, if they have a loved one. One or if they have epilepsy themselves Hopefully everyone's a little bit more educated about the disorder now with that being said. Yeah, I think it would… you know it's hard to message, I guess but so many people just really have kind of no idea what to do in the case of a seizure. Or, you know, it's very frightening to them to observe You know, sometimes, you know, if my wife has a seizure in public like in in the store or something, people really just really just don't know what to do like you know they'll freeze or almost just walk away even you know definitely there are people who you know, will jump in or try to help or you know whatever, but a lot of people just really have no idea at all how to think about it. And a lot of the steps for seizure first aid are common sense. You just take care of the patient and make sure that they stay safe during the event. You know, and a lot of times people don't quite know when the seizure is over. If someone's having a tonic-clonic seizure and they're convulsing.
[Michael Radell]
Well, as soon as they stop convulsing, that's typically the end of the event, the end of the seizure. They might not be able to answer simple questions. Or, you know, things like that quite yet because they're just starting the recovery period from that seizure. But if you stay calm and you kind of take a deep breath and you can help that patient or person much more than if you're You know, throwing your hands up in the air, running around circles, that's not going to help anybody during the event.
[Ray Watts]
Yeah. Yeah. From my wife's experience on the patient side as well um you know she He was the one who brought up trying a ketogenic diet to her neurologist. And they were really excited for her to try it, but they had never mentioned it to us. So, I think, too, it's just something where, you know. The information's out there and out there you know you're trying to share it, your organization is trying to share it, but I think, you know, kind of same as anything else We've got to be able to kind of do some research and advocacy for ourselves. You know, with our care providers and kind of like you said. It's not been It's a difficult lifestyle change for sure. But it's been very impactful. A little challenging too in terms of Well, aside from the diet, just her You know, kind of how she presents and so she used to have the aura and now she doesn't have it. So, we don't have, we kind of lost our warning system sort of. So, she has way, way, way less seizures. But they're a little more unpredictable. Still was kind of a trade-off, but ultimately it was it's been like an amazing option for her at least. Moving on from that. Something a little more targeted kind of to what we're trying to do here How can we best support individuals with epilepsy in the higher education setting?
[Michael Riddell]
Well, first off is having me on this podcast and getting the information out there about the disorder of epilepsy and stuff like that. As far as students in school, a lot of times in primary grade, secondary grades. Taking the accommodations or understanding the accommodations and maybe putting them into their 504 plan. Or the individualized education plan for their schools When they get to their higher learning, when they go to college or post high school. It's really up to the responsibility of the student You know, to make sure that people know the accommodations that they need And, you know, and talk about it. I think that's a big part of it too is talking about their epilepsy. And I'm not saying going around and broadcasting it to everybody and, you know, anybody. In the student body but you know making people aware that you have a seizure disorder, you have epilepsy and simple steps of seizure first aid or what to do. You know when I was in college, I had a quote unquote wingman, my roommate. He kind of kept a half eye on me. And it was a lifesaver. You know, he was able to come to my assistance if needed. And it was not a big deal. He didn't have to do anything above and beyond what anybody else would do, but at least he knew. My professors They were fantastic. They understood, you know, and if I miss class. Because I had a seizure the night before. It was just like I was; you know, I had the cold or something like that for Or on someone else. Having students uh people in the public talk about their epilepsy, all it does is good things, you know, getting that word out about how And you ask how you can support people or students with epilepsy is accepting their differences, I guess. And that just doesn't. That doesn't go for just people with epilepsy. That's all disabilities in general. And everybody… in general anyways, everybody's a little different. And, you know, people who have epilepsy, yes, they experience seizures every once in a while. Some more than others. I work with some kids and some young adults who are having hundreds of seizures a day. They're having those epsilon seizures and that impacts their life significantly. There’re other people like myself who had a seizure every once in a while, and it was not convenient. It was not fun. It was certainly not fun. But you know. Persevered and I advocated for myself and we encourage everybody to do that um you know whatever phase of life they're in, whether they're you know in in school and you know college or if they're in a workplace. You know advocate for yourself like we mentioned earlier about how some there was some significant historical figures that did some really great stuff because even though they had epilepsy so That shouldn't stop anybody else from accomplishing their goals. And one more thing on that is people should have what they call a seizure action plan. And the seizure action plan is a very simple document. It's one or two pages and it basically outlines all the aspects of your epilepsy diagnosis. From the seizure types that you have, the medications that you're on. The seizure protocol, the seizure first aid protocol, when to call 911, maybe some of the accommodations that you need because of your epilepsy People who have epilepsy a lot of times experience memory issues. Whether it's from the epilepsy itself or it's from the medications that they're on. They might have some, you know. Barriers to learning because of the diagnosis. So, a seizure action plan is important. And there's samples of those on the Epilepsy Alliance America website. You can find those there. It's just a good thing to have either a good thing you know in the in the nurse's office or the disability office or someone that has access to it too that is working with the students.
[Ray Watts]
Yeah, well said. Thank you. So now for a little bit more of a fun one i guess so we've be asking everyone who joins us on the podcast to recommend a book or a film that's related to their specific topic. It's something that speaks to you that you think more people should be exposed to. What recommendation do you have for this?
[Michael Radell]
Sorry, I thought about this a long time. And there is this writer-director, his name is Miles Levine And he created a short film And it's called Under the Lights. And right now, actually, he's in the process of making it a full-length feature. And it's literally a film that portrays this young man in high school and he just longs to be normal. And he wants to experience the things that everybody else experiences. Going through high school and he wants to go to prom. And he has a pretty significant or severe seizure disorder. And he would go to great lengths to make sure that he gets to prom. And even sneaking out and not letting his parents know and going out to prom. And he actually ends up having a seizure when he gets there to the high school and he finds himself in the women's bathroom on the ground and this this woman Or this other girl who had relationship issues. During the prom and she went in there and she was you know crying about her own situation and he came she came upon this guy Sam and after a little while. He realized that he just wanted to be normal. And she understood, you know, the sufferers or the problems or circumstances that he was going through and they actually ended up having a dance at prom. And the fire alarm was going off because she set off the fire alarm because she was mad at her boyfriend. It is a very um profound piece of film that a lot of times a lot of people should watch and just kind of understand the barriers in the things that people go through when they have a disorder of epilepsy and then longing to just participate and just live their life of their choosing through this film. So, I would recommend that. It's called Under the Lights. And it's written and directed by Miles Levine. It's a short film right now and it's in the process of being made into a full length feature I recommend that.
[Ray Watts]
Thanks. That sounds really interesting. I can imagine right now if I recommended to my wife, she might be like, nope, a little too real for me. But I think I'll at least want to check it out. But yeah, thank you for the recommendation.
[Michael Radell]
Absolutely.
[Ray Watts]
So that concludes our discussion today. Again, I'd like to thank Michael Riddell from EPI for joining us. I really appreciate your insights and also really appreciate the work that you're doing. You personally, and your organization as well. Michael has provided us with some extra resources that we'll be able to make a available to anyone who's potentially listening to this so we'll have some follow-up documents for anybody who wants to check that out.
[Michael Radell]
And if anybody's interested in going to our camps, either as a camper or as a volunteer to come and be a cabin council. For these young children who have the disorder of epilepsy, please feel free to reach out to us. At epiny.org and you'll find all the information there in our epilepsy services tab.
[Ray Watts]
What's the… What's the age on that or…
[Michael Radell]
Potentially maybe like high schoolers on break be able to the campers are typically eight to about 17. And the counselors are 18 and over. So we do have a CIT program, a counselor and training program. So, we have 16- and 17-year-olds come And they're still considered campers, but they learn what it takes to become a counselor. And then once they turn 18, There’re individuals who are interested. They come and they would be with the campers the entire week. We certainly do background checks and making we've, you know, we vet all the volunteers Just like we do staff here at EPI. We do some training and then the last week of July. Is our camp, and it's a great experience to learn a lot about yourself and also others, especially those with epilepsy. I encourage you.
[Ray Watts]
Great. Once again, thank you so much for joining us and Thanks, everybody who's listened today, and we hope that you'll tune in for our next episode as well.