What you should NEVER do if someone is having a seizure

Wednesday, September 13th

Sandy Waters sits down with President & CEO of Epilepsy-Pralid Jeff Sinsebox and Community Educator and Camp Director Mike Radell

What should you know about Epilepsy and how you can help someone who is experiencing a seizure.

We also learn more about the new program "Project Uplift"

Epilepsy-Pralid, Inc. provides support to individuals with epilepsy, brain injuries, and developmental disabilities and their families. For more information, visit http://epiny.org/


Transcript - Not for consumer use. Robot overlords only. Will not be accurate.

Thank you so much for doing this again it is neighbors in need I've seen you plotters in in the studio with fast today it's tough luck seat pre lit we have Jeff since the box the president and CEO and might read out. Community educator and camp. We'll link you so much I Orioles it's become an incidental problem okay. Let's get this out of the way will we here at Alexi pray led. It's a pretty live part mean okay we're not used to that part of that. The Al I'll take that one more we actually were merged two agencies and merge together so I've got very good part was an agency that was called people rebuilding and living indignity. And in 2013. Emerged with the epilepsy foundation of Rochester Syracuse and Binghamton really long name for really on names so it. It's too many syllables out across the board but that merger we wanted to treat it really like a marriage of equals. And bringing it to agencies together so that's the epilepsy heights and pray that says okay. It's it's it doesn't flow really easily we go with the PI a lot of the times because that's a lot easier for people to remember so worked really closely with people who have. Epilepsy other neurological impairments brain injury autism developmental disabilities just. Okay yeah RA and the website EP IE. And why debt pork yet to find out all the information yet get a few things that we want to touch on today project op left. And and it just seizure awareness altogether but let's first. Dig a little deeper into what you guys still. You already touched on who you help them. How do you help them and they knew that camp director what does that mean there's a camp I. We're actually just on the the heels of camp area just got back last week we had a a great week it was berg individuals young adults and children who have epilepsy. And they come further weaken and and to get to be kids again and just be able to do that kind of stuff in a safe environment so we give up 670 kids this this year and they just a blast and just do those kind of things like while climbing swimming. Of course frustrating that they may not have those opportunities presented to them if they didn't have a kick our camp like ours okay. Let's learn a little bit more about epilepsy has unless you. Have it or know somebody as you really have no idea what that means that and there could be co workers that. Have seizures and you don't even out at two and so can we do learn a little bit about epilepsy itself. Sure from being in education coordinator and maybe should take this I'm epilepsy is they are neurological impairment so what happens in the brain. And it's when I'm these seizures are re occurring we happen multiple times. I sometimes like 70% of the time when people have to on the diagnosis of epilepsy. They receive each free treatment whether it's medication or something that in this seizures go away in elevate the from the other 30% sometimes people have very. Difficult times struggling with that seizure control and they have to have other parts of the medicine isn't working right. Arm so they they may be go to a special diet or they possibly could going to have surgery. They have a device like the biggest nerve stimulator or something like that took to also our help combat these seizures from happening in the brain. What happens to the brain when a seizure is tapped this kind of like a computer when your computer short circuits are. Or malfunctions for a moment I'm is Erica an abnormal electrical activity in the brain. It causes a person after the seizure. Arm and it lasts for a few seconds are few minutes and then it it it it reboots kind of Aniston's and it's goes away. Arm and they may need to rest for a little while after the seizures over. Our enemy hopefully you get raped back into whatever activity they are doing before. Arm a lot of times when people think seizure. They do think of the time o'clock taxis are what we used to call brand moll seizure where person gets very stiff and very rigid and yeah it has the convulsions. But there's so are bugged about twenty different types of seizures in people and out. So you could have the apps not seizure for instance where causes a person just the kind of stare off into space for a couple seconds or. Or smacked her lips or hurt a rapid I've letters of support that. Sometimes there's an the awareness factor where a person doesn't even know that they're having a seizure or doesn't remember anything during the seizure. So arm you know on the community you know it that make. Present a couple obstacles when there in a job setting or. Even staying at the bus stop and they don't remember to get on the bus because there in the middle of a seizures. On my guys don't do. Could you living with epilepsy and you don't even know it because you're you're facing these type procedures rejoining realize you have. He it's is because the lack of awareness is a struggle for some people. Com kids in school sometimes go years without being diagnosed because it looks like they're just not paying attention during in class. But yet if someone's living independently alone and they don't have these memories of the seizures you know if you go undiagnosed for a long. I think that's one of the parts of the challenge of it is is that epilepsy is not a visible. I disability can't see it you know and a lot of people so it impacts different people and very unique ways. And and kind of on a global agency. Level one of the things that we do our job is to help. People remove barriers that are standing in front of them can help them get the life that they want to live and so. With people that love so apple what she's one of our four major program areas and and and win that we provide you know on Mike is really one of the driving forces here. But we provide a series of different support seek talks about this camp it's one of eight the country. But there's overnight camp for kids with with epilepsy but there's programming issues other things there's a big piece legislation the governor just signed up yesterday. I Sudan most people don't know about Sudan that is the sudden unexpected death from epilepsy. It's it's now recognized as a cause of death in. In New York State so. You know took a lot of advocacy from the national epilepsy foundation for our organization and other ones across the state. Team to get that done so that that was a significant barrier people don't realize the way that epilepsy can impacts. And we have education programs. One we're gonna start running second and you know project uplift our arm I go are two schools are also have a an educator in Syracuse and we gore two schools businesses agencies in teaching talk about the disorder narcolepsy. Are to the people who need it most you know whether it's faculty and staff at schools bus drivers. You don't even school nurses you know they they need to have the most updated information and be able to help serve dessert that their their children and schools. Our employers. Are and it's been an individual is working at a at a at a job and they just happen ever epilepsy. A sometimes the it is the coworkers and supervisors and in May managers need to know what to do if someone has seizure money a BC overstates apps. On our schools getting better acts. Recognizing or are taking initiative. Passed can diagnose student. I would say yes and no you can probably validate that we you know there is a significant event that happened at Binghamton. Less than a year ago. We're at Binghamton University. And so this college that that symbol was having a seizure and co worker put a spoon in the mouth to stop that individual from swallowing that tongue which is. That is prehistoric kind of thought you would never do that for somebody having a seizure. And the TV station down there ran it as a look at this heroic act in the college recognized. This person for doing heroic act and its exact opposite of what you wanna do so I. There's still had a lot of misconceptions. As to what are we supposed to know. How can you help somebody threw that. Again depends on a different types of some owners. I mean they apps are c.'s letter referred to before is this kind of mysterious but there's really not much to do but if someone hasn't atomic clinic seizure. They may fall to the floor yes he's wanted to make sure you are at times using your common sense making sure that are comfortable and safe you know clear the scenes so that there's. You don't know sharp objects around them. Are you wanna make sure that there there had is is are comfortable. Com maybe put them on the side. There's a lot of times people tend to vomit or get sick during a seizure in after on this side they're not my stroke but if there on the back facing up to remain armed. He's aware that the whole idea of maybe he'll choke artist Tom. Yeah yes and one of the things in emerged spell right now is that you cannot swallow your -- it's impossible destroyer Tung sin if you contreras even while. And they had to think what does it right down to lose control of the jaw muscles and that tongue gets kind of in the way. So featuring the person societal floats once I've mouth opened up that are whistler and read a can just send them to the site yet you don't wanna stick anything in their mouth. Including your fingers as you might get your finger bit offensive just keep everything on the person's mouth. It more chances are not everything we did is in the market they're eating I think will tomorrow during the seizure. How long I guess it depends on the duration night and on the individual some seizures can last just a few seconds others can last upwards of you know. A walk up and several minutes so we wanna make sure that if they if they do have an extended seizures that last more than five minutes are that's a good time to call 911. Arm a lot of times people finger every single time someone has their has a seizure they have to comment 11 but that's not the truth. Because a lot of terms who have epilepsy have been quite often. If they're hitting 911 Karl every single time it's is a lot of waste a time. I'm but there are certain examples why are you would mark it more medical personnel on Karl. 10 win which is excited seizure if they injure himself to a seizure. Arm if they have more than one in a row like a big cluster Rikaart. That's a good time. Aren't there in the water you know you don't know if they've ingested some water and could possibly ever drowning. Those rural out of the reasons why you would comment when one but the typical individual who has epilepsy. And this is your as a seizure and they come out of it they may wreck have to rest for a little while and then continuing we. Their daily living at it's it's it's an individual experiences every single person. What they need during a seizure would be different for different people so if there's someone in your life that has epilepsy knowing what types of seizures they have a what their care and you are you do best the best thing if you're dealing with a stranger situation. If there's ever a doubt than you would call 911 if there isn't out. Now with each seizure does it damage the brain. There's no proof that seizures cause. The image each and every time there's ever ultra now I know some kids and some young adults who have upwards of 67 BBC's today. You know it's it's a day gala at home multiple different legs of seizures but they're having that much easier to be. With that happening to them three pound organ in your skull. Inevitably there's going to be some partner to delays some learning difficulties and things like that but I prefer to answer your question about is or damage being done each and every time. Probably not because it's just an abnormal electrical. And Paul. So act and and it also says at apple offseason disability that tends to piggyback with other ones that we serve. People with intellectual and developmental disabilities is an agency people with traumatic brain injuries. And the number of individuals that also have epilepsy. Which very much complicates things up what's the mental health it's a tends to piggyback with a lot of other things. So it it makes the care of an individual can be very complicated it. If someone has. A mild mental health issue and autism and may be a mild brain injury or something that their care can become very. Complicated as a result. There's a lot of awareness we need to get out there because I don't think people really connect us to leave and you. Yeah still going back to the question about the schools when you are going in and speaking to be schools are they welcoming to learn. As much as they can. Most are absolutely. There's two reasons why would get caught in the school is one as right. I present that there we have the service you know is the free service that we can come into to educate the faculty staff and even students. Are another time his reactionaries so first a student. Is enrolled in the school and on the teacher needs to have that information when school nurse is to have that information and I can command. And we can do that I knew that that that valuable service that they have. The information. At their fingertips now when they're working with the student. How do you if sometimes like you said some individuals to space seizures once in awhile they're not really of that severe. How do those people finally. Come to the realization that they do indeed having seizures. You have a young child let's say. Well a lot of times it has you know if there's a pattern of okay for some reason apparent notices that the kids just had stared off into space or. Or they noticed something that's not typical not out of the regain normal yes I go in and a lot of times in neurologists we'll do several test. So don't brush it off as a parent loan know your doctor guess what can happen is. Is it for kids have been a lot of apps front seizures and there are literally unaware for a period of 234 seconds a time. They go to school. Or all of a sudden they're not retaining that information is being taught during the clap yeah so if we get them tested we find out that they have this disorder. Then they can implement some treatment like a medication the seizures go way no issue. You know but a lot of times that goes. Many years without being diagnosed and editors Gail Carson and you know long term effects now let's get into project a left. The problem Nomar about that well this is one of the programs that we have at the agency and Regis where's finishing up our first session are written where we're looking to start another session. Are it's a phone based telephone group. That arm empowers people would epilepsy to improve their own mental health. Are through my infamous my infamous and partner to be heroes. So we facilitate this and people who are interest and just move Carly agency and we can set up at a time convenient for everybody. And literally it's about an hour each session. I runs by eight sessions and we go through some activities exercises. To reduce anxiety that often is very. Prevalent when you have epilepsy and to be a part of that learn more about it we just want to upset right on the website or you can car or agency. Packing your opponent your record for every 54424430. If you wanna speak directly to meet to get more information are my extension is 2741. Wonder file and it's EPI and why dot org at the let's seep trail led. You guys are wonderful thank you so much for everything you do for our community and down and treating this awareness and if you have any questions just reach out EPI and why dat. We'll work ethic and I just pitch a couple little things chart I'm pleased you can follow us on FaceBook you can get to that link on our on our website and there's a new project uplift session coming up but pretty soon. I November is a book C awareness month and that we run number of programs you can find those on our website as well and then our truck football which is our big annual that I did you get to the new leopard yes we had does Scott's designer oh come out to go yeah I in the face first in a tuxedo but. I'm February 3 of 2018 will have a lot of talk about that's our primary fund raiser to support the epilepsy programs we do did the rest of our programs. We have a lot of government funding attached but the epilepsy programs really come from small grants and donations from head from people that that sophisticated. Who work with us we have a lot of pretty cool other programs that it needs donor dollars to DC it's wonderful for us thank you so much thank you my pleasure.