President and CEO of the Epilepsy Association of Western and Central PA.
November 20, 2018 - 2:00pm to 3:00pm

In recognition of November as National Epilepsy Awareness month, Joyce welcomes Peggy Beem Jelley, president and CEO of the Epilepsy Association of Western and Central PA. Ms. Beem Jelley will discuss the mission of this organization and the programs and services that foster greater awareness of epilepsy.

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Bender Consulting Services

DISABILITY MATTERS

NOVEMBER 20, 2018

1:00 PM CT

 

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>> JOYCE BENDER: My friends around the world, every country, all 17 that follow the show and there are so many.  Ireland, you know how much I love you.  You will be so great.  Growing every month with listeners but really to all of you, thank you so much.  You are helping.  Yoshiko Dart, I wish you a very happy Thanksgiving.  We think about you and your husband all the time and I also want to thank Highmark.  Our leader sponsor for the past several years.  David Holmberg, the CEO.  Deb Rice.  So many people, all of you really are great, great friends and have helped Voice America help so many other people.

And last but not least, speaking of Voice America, I want to tell you about my great, fantastic engineer oh, is he awesome, Aaron Keller.  Thank you, Aaron.  Oh, my gosh, this guy!  He probably knows more about disability than so many Americans because he's been taking care of my show for so long so VoiceAmerica, better take care of that.  And with that, this is national epilepsy month.  It's very personal to me since you know I am living with epilepsy and hear it now, I'm not ashamed I am living with epilepsy and I am just so proud to be on the board of the epilepsy association of western and central PA.

And may I tell you how thankful we all are for Peggy Jelly, the president and CEO.  Peggy, I love you.  You are making a difference every single day in the lives of those living with epilepsy.  Peggy, welcome to the show.

>> PEGGY: Well, Joyce.  Thank you so much.  And we'll absolutely adore you and are so, so thankful and blessed to have you on our board of directors and working with us and guiding us all the time.  So, thank you for having many.  Happy Thanksgiving to you and to all of your listeners and happy epilepsy awareness month.

>> JOYCE BENDER: Thank you so much.  And before we start, Peggy, we have a new name and I just want to make sure our listeners know and understand that.  Because really, it does not impact any adverse way, any of our donors and listeners.  Just so people do not get confused when I said the name epilepsy association of western and central PA, would you mind sharing our new name, tell everyone about that and also what the alliance that I know we are part of.

>> PEGGY: So, our name, as you said is the epilepsy association of western and central Pennsylvania and we are now the, now part of the epilepsy alliance America which is a new, excuse me, national organization that is dedicated to providing supports and care and hope to those who are living with epilepsy on a daily basis.  It is essentially a group of state‑based partners who are serving hundreds of thousands of people who are living with epilepsy and their families, caretakers, people who are dealing with epilepsy and coping with epilepsy on a daily basis.  So the change in the mail is really just an indication that we are no longer an affiliate of the Epilepsy Foundation of America, no longer working with the Epilepsy Foundation of America, are keeping our focus on local supports and local services and working with Epilepsy Alliance of America and other like‑minded organizations that are really interested in working in local communities, local neighborhoods and with families as close to home as possible.

>> JOYCE BENDER: And I have to tell you, we are only moving forward.  We have such, such a tremendous Board of Directors and a great Chair, who I just mentioned earlier.  Deb Rice Johnson and you know, I've known Deb forever.  Wow, what a success story she is.  I don't know if you know this but she started out in the Claims Customer service area and here she is now, the president of this huge organization and she has been nonstop supportive.  Wouldn't you agree with that, Peggy?

>> PEGGY: Absolutely.  Absolutely.  At some pretty critical times during the history of our organization, as well.  I was just going to say, you know, Deb has just been such steadfast leadership for us.  You know, I was thinking about this just a week or so ago.  You know, Deb became the Chair at a really critical time for us when our former CEO was leaving, you know, Joyce, it's always, when you have somebody like Judy Painter who is in a position like she was for as many years as she was during the tremendous growth of this organization.  Oftentimes, nonprofits suffered greatly and Deb was just amazing for me working with the board of Directors to kind of steer us through that transition.

>> JOYCE BENDER: Yes.  Judy, we love you.  She did so much for this organization.  Just as you said, you know, now that you brought that up, Peggy, here we are, Epilepsy Awareness Month because so many people really do not understand Epilepsy and are afraid of epilepsy.  Would you mind telling our listeners, I know that story about the brown envelope!

>> PEGGY: Sure.  I've been working with epilepsy for almost 25 years now and when I first started working with epilepsy and even still today, we will get phone calls from people who don't want to give us their address, who don't want to be on our mailing list or even still on occasion but it was pretty common when I started working with epilepsy 20, 25 years ago that people would say to us

 Okay. You can send me that brochure, I would like to be a better patient, get more information, but please make sure you send it in a plain envelope, I don't want the Epilepsy Foundation's return address on the return instead because they were so afraid that anybody in their home had any involvement with epilepsy.  They didn't even want the mailman to know that anybody in their home might have epilepsy.  There was so much stigma attached to epilepsy and having seizures that they didn't want even us to have a return address on our envelopes.

>> JOYCE BENDER: Wow and you know, when I travel around the world, whether it's Kazakhstan, South Korea, Japan, Indonesia!  They're still at that level.  They're not even to send me the brown envelope.

They're, don't even talk about it.  Don't even want anyone to know but yeah, that sort of says a lot.  Sadly, that stigma still exists today, which is why I think it's so important to have advocacy.

>> PEGGY: Well, I still encounter families that will say to us, sadly, that they had never shared the information about their father having epilepsy or an older person in their family having epilepsy because the ‑‑s told them not to have that information because people who have epilepsy and seizures are routinely.  Because insurance company has denied people things like life insurance and car insurance certainly in the employment arena as you well know, it has been a huge problem for people with epilepsy so I think people have not talked about it.

>> JOYCE BENDER: I agree with you so much.  Well, back to our association.  How much of Pennsylvania, where do we all work with.  Where does the west everyone association PA work?

>> PEGGY: We don't necessarily have a defined territory, so to speak, but we have traditionally worked in the 49 Counties of western and central Pennsylvania.  So, generally speaking, from Lancaster west, we have an office in Camp Hill so we're pretty active in that region around Camp Hill, Harrisburg, out in that area.  We also are pretty active and have a staff person who is in Altoona so we do a lot of work in Altoona, State College, Johnstown and here in Pittsburgh.

So, you know, we will do our best to work with anybody who is looking for help and support to cope with living with epilepsy.  And if we can't do it, obviously find somebody very close to home who can help somebody.

>> JOYCE BENDER: Right.  So that means anyone can contact us in the State?  How many people in Pennsylvania live with epilepsy?

>> PEGGY: Well, you know, that's always a challenging question for me to answer, Joyce.  Because in Pennsylvania, epilepsy, seizure disorder is not a reportable condition so we always only have estimates.  So I always say to people, you know, we know from the Institute of Medicine's report that one in 26 people have epilepsy.  And that's a lot.  So, I always say to people, you know, next time you go to church or you're in a grocery store, you're in a movie theater, look around you and think about the fact that one in 26 of those people are probably folks that could be living with seizures.

Statistically, in Pennsylvania, they say somewhere between 1 percent and 2 percent of the general population has an active diagnosis of epilepsy.  So in Pennsylvania, I would say minimum of 150,000 people have epilepsy, have an active diagnosis of epilepsy and are taking medication.  But, it could probably be as high as a little over 200,000.

>> JOYCE BENDER: Oh, yeah.  I think that's true.

>> PEGGY: The entire 2 percent.  But it's difficult to pinpoint.  I mean, I can tell you that the last time the Department of Health conducted some surveys with school nurses and they don't necessarily do it all the time.  There were like 19,000 kids with epilepsy taking medicine during the school day.  That's a lot of youngsters, kids taking medicine during the day and oftentimes children aren't taking medicine throughout the school day so if taking medicine at night.

>> JOYCE BENDER: Think about, I went to the doctor in a seizure that almost took my life.  Now, that means there are other people that go to family doctors where their epilepsy is misdiagnosed.  That's what I'm saying.

>> PEGGY: And just the stigma.  I think there are people that don't tell their doctors they're having seizures because they don't want their driver's licenses suspended.  They don't want that information to be part of their medical record.  And you know, Joyce, many, many people feel like epilepsy and seizure means tonic clonic grand mal seizure and that's what they think of with epilepsy. And there's so many different times of seizure and so many things that can be happening with people that is actually seizure activity that, you know, it's complex partial seizure activity that just doesn't get recognized as you say, I think that's particularly true in older populations, aging populations, but, absolutely, better diagnosis is needed, better treatments are available today than they were but getting to good specialists is always the best idea and the best approach to take for treatment for folks.

And again, I think the important point is that sadly if you visit the Centers for Disease Control website, their message is that there are more active cases of epilepsy today than there have ever been.

>> JOYCE BENDER: Really, wow?

>> PEGGY: Now, if that's connected to better reporting.  If that's connected to folks, you know, maybe surviving a head injury that think wouldn't have survived in years past, I'm not sure what that's connected to but I can tell you that there are more and more people in this country living with seizures every day.  And getting a handle on that specific number is a little bit of a challenge but we know that it's growing.

>> JOYCE BENDER: Well, you know, I want to tell you something.  I don't know why but one of the most asked questions to me is about children using a seizure dog.  I mean, people ask me about this all the time and I think so many of them really don't understand or value wrong idea.  I thought maybe you could explain.  You know, what does the seizure dog do for people with epilepsy which, I prefer to call it, when, everyone calls these dogs seizure dogs and I said to someone, how about a service dog for someone with epilepsy.  Like, a service dog for someone who is blind.  Do you know what I'm saying?

>> PEGGY: Yes.  Absolutely.

>> JOYCE BENDER: What is a service dog for someone with epilepsy?

>> PEGGY: As you know, we have a service dog for epilepsy in Pennsylvania called the Oscar program where we provide service animals, service dogs to people who have seizures.  In the last five years, we have placed 14 dogs, about half of those have been to school‑aged youngsters or folks who are graduating from high school and going on to college.  So, about half of those dogs are in service with kids either in school or in college.  Just like anybody else with a disability, the specific things that those dogs do for the person with epilepsy can be very individualized.  The dogs, they're all trained to do some general things if they are going to work for somebody who is having seizures. 

One of the most important things they can do is summon help so all of the service animals that we place are trained to bite down on buttons and alarm systems that will trigger those first responder alarms that somebody comes on the line and says, oh, you know, you have a problem and if the person doesn't respond, local EMS is dispatched to that home.  So, they are all trained on how to do that.  We have one dog who was trained actually on how to swipe a VNS magnet which is just the most incredible thing I've ever seen.  We have one dog who was with a young girl who is now actually in high school.  She may be graduating this year.  She has a special harness because she has a lot of medications that make her balance uneven and difficult for her going up and down steps so he actually provides her with some stability in her walking when she's going up and down steps, that kind of thing.

Some of the younger people that we have worked with who have rescue medicines like, Diastat or Versed, the dogs have been trained to get the medication for the caregiver so in other words, the dog knows the person is having a seizure, they're going to need their seizure meds.  They can be given a command, bring it back to the caretaker so the caretaker haven't have to leave the person's side so it just depends.  We have one dog that was, this I also find fascinating, was trained to stay in place and dig his heels in and not let his human partner walk forward when he has having seizures so that allowed that person to become much more mobile in the community because his family was just very, very concerned about him crossing the streets and he lived in a fairly urban neighborhood and having the dog be able to recognize that he was in control of his walking or walking and this allowed him to go out and be more independent in the community.

So, all of the dogs that we have in service are either going to school or going to work.  A lot of folks who go back to work, we have several who go to work with their partners ever day so it just kind of depends exactly what they need and our dogs to the Oscar project are actually, like you say, service animals.  Not just ‑‑ not that there's anything wrong with therapy dogs.  Therapy dogs are phenomenal and wonderful but the distinction is if an animal is a service animal, they have to be able to perform at least three separate tasks so going to get help or summons help or biting down on the alarms for people, providing stability, those kind of things are all specific task related.

>> JOYCE BENDER: You know what?  That is so amazing.  That example you gave.  It also has been helpful, again, the service dog trained as Peggy said in these different tasks but also adding to that for young people more confidence for them.  Because as you know, children with disabilities of any type are so bullied in school.  As a matter of fact, more than any other group of people, high school kids and middle school kids with disabilities are bullied the most.  So, you know, that dog even provides confidence.  Do you know what I mean, Peggy?

>> PEGGY: Absolutely.  Absolutely.  It's really astounding.  The self‑assurance that these young people gain from working with animals is almost beyond description because they have to be able to command the dog and work with the dog and build a bond with the dog.  If you're going to work with a service animal, you really have to be able to be in command of that service animal and it has.  And most of the people, but there have been a couple of the folks that have been in our program, one young person in particular, she was so, so shy when she came into the program.  She would hardly even talk in a whisper and shake your hand but almost painfully shy.  She has had her dog I think four years now.  She was one of our first cohorts.  She's just a delight now.  She and her dog were both in a play last year.  It just melted my heart to know she had come so far.  Now she comes in our office and you'd think she runs the place.  She's great.  She's so outgoing.  She’s become quite an ambassador.

>> JOYCE BENDER: That is awesome. Go ahead, Peggy.

>> PEGGY: I was just going to say, she just is not afraid anymore.  So many people who have epilepsy are so fearful all the time and having that animal with them really provides them a lot of reassurance that they're going to be okay.

>> JOYCE BENDER: Right and you know what, Peggy, just as we said, the stigma, discrimination towards people with epilepsy, in so many ways and sadly, of course, the employment of people living with epilepsy and I always tell companies, a child with epilepsy, here they are in school, bullied, not included.  Do you know very well, Peggy, how many times a parent does not want a child that's best friends with their child to come to a sleepover because they know they have epilepsy and when you are not included, when you're left out and then it continues through high school and then it continues through college, I always say to the employers, when you don't hire people with disabilities, who is the bully now?  So, you know, we've got to really fight this; we've got to fight for advocacy and what a perfect time for our news break, advocacy matters with my very good friend, Peri Jude Radecic.  We are very thankful for you.  I'm also on your board, Disability Right.  I'm very thankful to you.  Disability Rights of PA is part of the national organization, protection and advocacy, fighting for people with disability rights and Peri is at the forefront in the United States, fighting for rights, fighting for our advocacy on every show because advocacy matters.  Peri, welcome to the show.

>> PERI JUDE RADECIC: Thanks, Peggy and thanks Joyce for your leadership in education.  I want to stay on education today because just a week or two ago, we had a new piece of legislation in Congress that was introduced by the Virginia Congressional delegation representative Bob Sat and representative John Byer introduced the keeping all students safe act.  Now, because we're near the end, as we talked about last week, we're near the end of the 115th Congress, we certainly don't expect in the remaining few weeks of this Congress for this legislation to have a hearing and mobility but it does set us up for a hearing and movement in the 116th Congress.

So, let's take a look real quickly about the keeping all students safe act.  If you want to know more about the Keeping couple all Students Safe Act, you can go to a website called, stophurtingkids.com.  That's stophurtingkids.com.  So, the legislation really focuses on three main areas.  Establishing minimum safety standards in school.  To establish monitoring in this school system.  And in this case, we're talking about policy and procedures that our minimum standards that schools and law enforcements have to abide by when they're in the schools and giving competitive grants to school to do better when it comes to student safety.

And then third, increase.  Then further to (inaudible) reduce abuse and death when it comes to school sites.  So what really are we talking about?  Abuse.  Chemical restraints.  If the restraints of children in our schools when these children provide, when these children are not at risk of their own life or somebody else's safety.  That's what we're talking about, Keeping Students Safe Act.  Again, Bobby Scott is the lead sponsor from Virginia.  It's been introduced in this Congress.  To find out more about it, you want to go to Stophurtingkids.com.  We will have more information like fact sheet and section analysis of our website at disabilityrightsPA.org.  That's disabilityrightsPA.org and the great thing about the disability rights Pennsylvania and our sister agencies across the country is there is a special education need related to seclusion and restraint or epilepsy, give us a call and we're happy to walk parents through what happens next, what they can do to be their child's best advocate, because advocacy matters.

>> JOYCE BENDER: Wow.  That is very powerful.  Peri, when you're on over the following month, I hope you will keep us up‑to‑date on that and when you are talking about this, I was waiting until you got to the part about seclusion or restraining, actually harming a student for that reason.  I was waiting until you got there because Peggy, you know that's something we have to be concerned about with children.  I was thinking about that.  Do you want to comment on that one minute, Peggy?

>> PEGGY: Well, you know, I think that people need to educate themselves.  I think that just like everything else in society is kind of out of whack and everything else is okay these days with so many people in a heart breaking way, I'm seeing and hearing more and more from people that children in schools, again, are being secluded and treated ‑‑ secluded and treated in reprehensible fashion and people are going to have to open their eyes and use their voices to say, this cannot happen and this cannot be done.  I think people have to really pay attention to the physical restraints and understand as family members we have to go to schools and educate people about how to properly educate teachers and bus drivers and folks who are helping to care for and spending time with our children ourselves.  It just is, you know, children die.  I don't ‑‑

>> JOYCE BENDER: I know.  It's so upsetting.  Peri, when you were talking about this, this really directly impacts kids with epilepsy because I can't begin to tell you how many people or parents are told me about their child being put in a closet at the school or being held down.  As Peggy said, which many of these things can result in death, so here's my question, Peggy.  What do we do when we hear about that?  I mean, I'm sorry, Peggy, Peri.  What do we do when we hear about that?

>> PERI JUDE RADECIC: So, we're going to need those stories ‑‑ well, first of all, that should be dealt with by either a lawyer or advocate or protection and advocacy agency so that that district stops doing that.  That's number one.  The second thing, we'll need those stories as this legislation progresses in the 116th Congress passes.  Federal legislation, across the country that will make the school districts accountable for their actions.

>> JOYCE BENDER: Well, absolutely, we will be happy to work with you on that.  I am really, remain happy, Peri, that you brought this up.  Once again, I am so proud of everything you do.  Peri, I really appreciate you being on this week with this timely information, but one more time, your website.

>> PERI JUDE RADECIC: Yes.  Our website is disabilityrightsPA.org.  And the website for the keeping students safe act is stophurtingkids.com.

>> JOYCE BENDER: Stophurtingkids.com.  Got did.  And Peri, thank you and have a wonderful Thanksgiving.

>> PERI JUDE RADECIC: You too.  Thank you so much.

>> PEGGY: Thank you so much for everything you're doing, Perry.

>> PERI JUDE RADECIC: Sure.  Of course.  We'll talk to you later.

>> JOYCE BENDER: You know what?  Isn't that terrible, Peggy?  So upsetting when you hear about that.  We'll have to put that on our website so people know about it.

>> PEGGY: Yeah, it is upsetting and I, you know, again, if folks need help educating teachers, bus drivers, scout leaders, whoever about seizures and epilepsy, they can certainly call us.  We have terrific programs to educate folks about those thingies.  We can go in and do state training.  We work very closely with school nurses.  We have some districts that it's kind of routine that we are part of their in‑service training year after year after year and other districts that it's kind of hard for us to get in there and convince them that we have information that they need so if folks need information in their schools or community centers they can certainly get in touch with us and the epilepsy association and epilepsy alliance will provide those educational services and they're free.  So, you know, we're a nonprofit.  We're not selling anything.  We're not charging districts.  All they have to do is take the time to do is sit down for an hour and learn how to properly respond to someone, a child having a seizure.

>> JOYCE BENDER: Absolutely and I would encourage anyone hearing the show today going through that, make sure.  Peggy, our website.

>> PEGGY: Our website is www.EAWCP.org.

>> JOYCE BENDER: One more time.

>> PEGGY: Www.EAWCP.org.

>> JOYCE BENDER: And really, if you just put in epilepsy association of western central PA, go to Google, I'm sure it will come up but why I'm telling you this is if you need help, reach out, we'll get back in touch with you.  And you know , Peggy, when we're talking about advocacy and how advocacy matters and programs matter, this is really not a topic I like talking about next but for some reason, it seems to always be in the shadows and that is SUDEP.  Know we're working in that area now, right?  Aren't we going to be, or we have been working in this area?

>> PEGGY: We are.  We are always trying to do something with SUDEP and always trying to talk about SUDEP.  SUDIP is sudden unexplained death in epilepsy.  It is very disturbing.  It happens far more often than I think people realize.  Some statistics, you know, not just from SUDIP but it's always shocking, I think, for people to learn that more people die from SUDIP seizures, seizure‑related incidents than people die from breast cancer in this country.  And yet, we don't talk about that.  But sudden unexplained death in epilepsy is something that researchers still don't know a lot about but it's devastating because what happens is a person or patient with epilepsy essentially has a severe seizure in their sleep and they pass away while they're sleeping and their family doesn't know it so, it can happen to somebody who seizures are completely controlled, who hasn't had a seizure in a couple years or it can happen to somebody whose seizures are completely out of control.  So, I mean, you can imagine how devastating that is.  It can, you know, it happens to folks who have very, very small children.  Who are infants.  It happens to older adults.  It just is one of those things that is tragic and horrifying and yet for some unexplained reason, especially in the medical community, folks don't really talk about it too much. 

So we can't really say we can prevent it but there are some things we can do to work with families if they think that their family member might be at a higher risk of experiencing SUDIP and we do know there are some risks to be aware.  For example, if a patient is on multiple medications.  If their seizures are not controlled.  For some reason, boys seem to be at a slightly higher risk than girls.  There are a few things that you can do.  So, using, for example, a monitor, a movement monitor at night could possibly be helpful to let you know that your loved one is having seizures at night.  So we have a program to make sure loved ones who have a ‑‑ folks who have a loved one at a high risk of experiencing SUDEP can get a movement monitor.

There are two or three different types.  You know, different things work for different people, that kind of thing.  So, you know, there's a lot of research going on.  There's some cardiac involvement.

I think it's something if you are a person with epilepsy, you should talk about.  Some doctors are very open to it others are not.  So, again, it's there, it's something I think people should talk about.  You should know whether or not you are, or you are not at risk of SUDEP or you know, whether or not your loved one is a person who would be considered at risk of SUDEP.  And if you are at risk.

>> JOYCE BENDER: Right.  Like don't stop taking your medication.  Although, no one should stop but I'm just saying if you know it's going to be higher top priority with, and you know, I'm not sorry, though.  I'm not sorry to talk about this and I'm going to tell you why.  It's kept in the dark.  I don't get it.  You could save a life just knowing, okay, if my child is at a high risk, probably shouldn't skip medication or my son shouldn't be drinking alcohol.  There's so many things you need to know or really have such a high priority of making sure that you can handle what's going on so I'll tell you what, Peggy.  I didn't even know about this for a long time.  Here I am, I've lived with epilepsy and I do not remember any doctor other than, of course, once I got on the board and knew people like Jim Valariano but for years and years, you know no one talked about it.

>> PEGGY: Well and nobody talked about death and epilepsy.  I can remember when I first started, again, working with epilepsy, which is, again, almost 25 years ago.  Again, all of the literature said, nobody ever dies from seizures.  People don't die from epilepsy.  Doctors never said it.  Nobody ever said it, and yet, here we were answering phone calls from family members who has lost a loved one to a seizure.  I finally after a year, year and a half with epilepsy, I think we need to stop telling people, you're not going to die from epilepsy because clearly people can die from epilepsy and we did, we got with our advisory board and it's been a battle ever since.  It was, well, on very, very rare occasions somebody might die from epilepsy.

But, over the years and now we know for certain that SUDEP affects a fairly large number.  Excuse me, relative to other disease states.

>> JOYCE BENDER: Yeah, on one hand, there's stigma, about with people with disabilities.  And then there's this stigma of the medical professional not being forthright with the reality of the disability.  It's amazing how that seems to go across the board and this stigma is so entrenched in the way people think about epilepsy.  I don't know if you have any thoughts about that, Peggy.

>> PEGGY: I'm hoping it will change over time, Peggy, I think it was a huge problem that even just 20, 25 years ago, physicians were still telling people, well, this is what's happening!  You have something called epilepsy but don't ever say anything because you'll never get a job.  You'll never get insurance.  I mean, people were told by their doctors not to say that they had epilepsy.  Then as time went on, we went through the whole, we won't call it epilepsy.  We'll call it a seizure disorder.  Have you ever talked to someone who said, well, I don't have epilepsy!  I have a seizure disorder.  And then if you talk to neurology people, they're like, the distinction is not that great. 

If you're having reoccurring seizures, you have epilepsy.  So, I'm hoping that the stigma ‑‑ you know, when I talk to older folks I always think about this one particular gentleman who came from a fairly prominent family.  He came in one day and sat down and said, look.  I have always sent you guys donations and I've always supported epilepsy but I never told anybody why and told us that he had epilepsy.  He came from a fairly large family and he said, I've never, ever, ever admitted to anybody that I have epilepsy.  But now that I know Alan Fanica has epilepsy and at the time, Alan Fanica was still playing football for the Pittsburgh Steelers. 

He said, if Alan Fanica has epilepsy and thinks it's okay, I think maybe I can stop living in the dark and stop hiding from people and it was such a relief for this gentleman to just be able to say, this is why, from time to time, I don't drive.  I mean, he had spent his entire life making up stories and covering things up and not being able to just be up front with people and say, you know, I'm not going to be able to drive for the next couple of months because my seizures are active.

So, I think when you can't get a job, when you can't get insurance.  It's a horribly expensive disease.  You know, the medications terribly expensive.  The co‑payments are terribly expensive so, you know, folks are sacrificing in other areas of their life or other things their family might enjoy otherwise, I think there's a lot that people don't really understand what a seizure patient goes through.

>> JOYCE BENDER: Right.  Three things want to comment on.  I am one of those people that the neurosurgeon told me that I had epilepsy I said a very profane word because immediately, don't say that.  Not, like, here, in medical terms, explain it this way.  Don't say that.

Honestly, as if.  It was as if he was angry with me.  He said, you have a seizure disorder.  And when I left, I mean, I was so naive, I was thinking, oh, Okay. This must be different it was when I met Tony Coehlo.  He told me, have epilepsy and for whatever reason, it is the way it is.  And then about Alan Fanica for what a great person he is, never talk about that he had epilepsy.  Not a big deal.

It is amazing that when I met, now, like Vince Lombardi, one of the greatest coaches of all time, Chuck Noll.  When I met him and told him about my disability.  Oh, my goodness, he was so nice to me, so over the top nice to me.  And I had no idea why.  I mean, I thought, wow.  And then, there was some, it was a golf outing where you can go golfing and I gave this to my husband.  And oh, my God, to my husband, it was like, he was so over the top nice to me.  As you know, we found out he had epilepsy only a few years before he passed away so there you go, another example.  Another example of that.

>> PEGGY: Yeah and I think that's really damaging to the epilepsy movement that people who do live with epilepsy who are successful who have been able to cope with it and have strategies to share aren't willing to stand up and say, hey, you know, epilepsy is what you have.  Not who you are.  But, again, they're, you know, there are reasons for that and a lot of them frankly I think revolve around the insurance industry.  I mean, I know there's people in the entertainment industry who have seizures who have kind of toyed with getting involved.  I mean, I think Danny Glover has talked about the fact that he had seizures when he was younger and probably would be more involved if he could be.

But, you know, then he goes to make a movie and the people who are insuring the movie are like, what's the deal with his epilepsy?  Do you?  Don't you?  We don't want the liability of somebody being on the set having a seizure.  I mean, what other health condition has to deal with that kind of stuff?  I mean, do they say that about people that have heart condition?

>> JOYCE BENDER: Yeah, I know.  I know, Peggy.  Well, Peggy, I know we're almost to the end of the show.  We talked about all of this.  That means that we have to end on an extremely good note, and that would be the Mardi Gras.  Best event in Pittsburgh.  Best event.  Best Gala hands down.  So, this is highway it's obviously a fund raiser for the Epilepsy Association of Western and Central PA.  As I mentioned earlier, this year, oh, this is so exciting because it is our 25th anniversary.  And the king of the Mardi Gras.  March 5th, it's later this year.  It's usually in February, but it's later this year.  So, Westin Convention Center hotel ‑‑ I don't think it's the Westin anymore.  I apologize.  But here in Pittsburgh, as you said, it's a great event.  Great fun with the decoration and ‑‑ we are thrilled to be honoring Deb.

>> JOYCE BENDER: She is the best.  She is the best.  And I'm going to tell you, you better make your reservation soon and buy a table because it's sold out.  So, Peggy, one more time before we close, the website is.

>> PEGGY: Our website is www.EAWCP.org.

>> JOYCE BENDER: I would appreciate it over the holiday season.  Please make a contribution to our western and central PA.  You all know I'm right here in Pittsburgh and it's very personal to me but before we go, we end every show with a quote and this quote, how timely can this be is from Mr. Rogers.  Who said, "Love isn't a state of perfect caring.  It is an active noun, like struggle.  To love someone is to strive to accept that person exactly the way he or she is."

Right here and now, said Fred Rogers.  This is Joyce bender, America's voice with Peggy Dean Shelley, thanks, Peggy, on Voiceamerica.com.  Happy Thanksgiving, everyone.  Look forward to talking to you next week.

 

 

 

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