Patricia Dean: Mission of Epilepsy Alliance America

Welcome to Disability Matters with your host Joyce Bender. All comments, views, and opinions expressed on the show are solely those of the host, guest, and callers. Now the host of Disability Matters, here's Joyce Bender.

Happy Thanksgiving to everyone in the United States, and hello to everyone around the world. Special shout out to Richard Roberts in Brazil. Richard, I know some— where one way or another, you are celebrating Thanksgiving. And Richard is with the State Department in Brazil and my very close friend, as is a friend of mine, Gang Young Cho in South Korea. Love you, love you, Gang Young. Veniamin in Kazakhstan, love you. And hey, I love Cheryl Harris. She's with the State Department right here. So you all know, They send me around the world, you know, as an expert on the employment of people with disabilities. And if it weren't for them, the State Department, all these people would not be hearing the message. So thank you, and thank you to the 17 countries that listen to this show, from Japan to Australia. I— I really can't thank you enough. Such great supporters. Keep telling everyone, everyone about quality of life for people living with disabilities. Yoshiko, happy Thanksgiving to you, Yoshiko Dart. You know I love you, Yoshiko. And my great sponsor, Highmark. Hey everyone, next year is the 20th anniversary of my show. Can you believe it? I can't even believe it. And now I have this great engineer, Rachel, that will be going with me into the new year. So, hey, thank you everyone. And today I have, oh, a friend that I've had for a long time that I first met when I was attending the Epilepsy Foundation conferences years ago. A wonderful person, so passionate about the disability community. But now she is with the Epilepsy Alliance of America, which you all know I'm the chair of the board of the Epilepsy Association of Western and Central PA. And we are one of the affiliates that got together with these other affiliates, and we have this great alliance where we're hitting the streets with programs and everything. I'm so proud. We are part of it. And Pat is the Epilepsy Network liaison. Pat, welcome to the show.

Oh, thank you, Joyce Bender. I'm very happy to be here.

Well, I want to start, Pat, by you telling our listeners in the United States and especially around the world your story, like where did you grow up? Why did you decide to become a nurse? What led you to the field of epilepsy and working with children with epilepsy?

Well, I don't know if my story is so interesting, but Joyce, here goes it. So I'm a New York City girl. I grew up in New York City. I was born in Brooklyn and raised in New York City. You know, I had like a great childhood, nothing outstanding, but just a normal, healthy childhood. And I went away to college, and when I was in college, I majored in psychology. But the truth was, Joyce, I had really not any particular interest in psychology. I just— it was the subject I had the most credits with by the time I had to declare a major. So, but I went to college, I graduated, and then I did some traveling after college. I went— I was from New York, so I went out west. I had friends in Phoenix and then went to Mexico, and I wound up in Colorado, and I lived there for a while. And I went home to visit my family in New York, and unfortunately— or fortunately, it depends on how you look back on it now— when I was home, I got in a bad car accident. So I, instead of going back to Colorado as I planned, I was stuck at home because I had some surgeries and things like that. So while I was recuperating, a friend of mine from college came by to see me, and she was attending nursing school. You know, and even though I had a degree in psychology, I really wasn't doing anything in psychology. I just had jobs that I worked to make money to support myself, nothing related to the field. And I wasn't really— I didn't want to be a counselor or anything like that. But when she was talking about going to nursing school, you know, it kind of just struck me as an idea that I could do that. You know, that sounds like something that I might want to do. And the truth was, you know, I thought, oh, you know, you could be a nurse, you could travel. I'm not sure that my reasons were so altruistic, but, you know, I went for it and I went to nursing school and nursing suited me. And I worked in New York for a while and then I wound up moving to Florida. And when I came to Florida, I kind of worked for nursing agency and I was— I went to different hospitals and I I wound up at the Children's Hospital here in Miami and I went to a few of the different nursing units and I wound up on the neurology unit. And it was, you know, I've been doing this for a while, Joyce, it was back in 1980 and they had just opened up an epilepsy monitoring unit. That's when we started to bring people into the hospital and put them on video cameras and look at their EEG simultaneously and really take a hard look at epilepsy. Anyway, so I And I just wound up going there, just being sent there just randomly, and there was just something about it that interested me. You know, I would see these kids having these seizures and I would talk to the mothers and their responses to it, and that was it. You know, somebody asked me, you know, like how I found epilepsy, but I always kind of think, Joyce, that epilepsy found me. You know, I went there. I saw that, you know, I saw those people and I saw their need and it just kind of— it found me. And that's where it started. And from there, I got involved. I went to summer camp for kids with epilepsy. I joined the foundation and that was it. And I've been there ever since.

Now, you work with children, is that correct?

Yes, I do.

Yeah. Okay. Now, what's the name of the hospital again?

It's Nicholas Children's Hospital. Okay. And I have worked here for 40 years, Joyce. I am an anomaly in the world that I have the same job for 40 years. And like I said, I started out as a staff nurse here, and then I became a nurse in charge of the neurology unit, and then I became the nurse in charge of the epilepsy program, and eventually I went back to school and got a master's degree and a practitioner's license. So I was mostly I've been managing patients in the comprehensive epilepsy program here. And so over time, so recently what they— what my hospital has realized that it's very important for us to reach out to the epilepsy community, the different consumer groups, the Epilepsy Alliance, the Tuberous Sclerosis Alliance, the Dravet Foundation, different organizations that represent children with epilepsy. So my current title is Epilepsy Network Liaison. And yeah, so mostly what I— so not that I'm not seeing patients because I'm here on the phone with patients right before I got on the phone with you, but I'm also kind of working to build, you know, to work with the families and to work with what the families need and family networks. And instead of doing so much direct patient care, you know, figure out these programs that families— that our families families need.

Oh, that is so awesome. Well, I want to talk more about that when we come back, but right now we're going to break. If you just tuned in, we are talking to the dynamic and wonderful Pat Dean from the Epilepsy Alliance of America and network liaison. This is Joyce Bender, America's Voice. Where Disability Matters at voiceamerica.com. Don't go away, we'll be right back with Pat. Streaming live, the leader in internet talk radio, voiceamerica.com.

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Hey, welcome back everyone, and we're talking to my friend and the friend of people living with epilepsy, Pat Deane. And Pat, I, I was thinking when you were talking about your career that with everything happened during COVID I'm sure that they would never want to lose your Unfortunately, that's true, Joyce Bender.

I've been trying to retire, but they keep asking me to stay, and, um, I keep staying.

Well, that's good you keep staying because you're helping, helping us. You know, I mean, you've worked in this field so long, you know it. You know it better than most people would know it. You know, when you were talking about about working with children with epilepsy. I was thinking about, you know, of course I have epilepsy, but I was thinking about how I was misdiagnosed and the doctor told me I was fine, but I wasn't fine and I ended up having that accident. And when you meet people that have gone only to the family doctor, do you see that frequently that with children also that it was misdiagnosed?

Diagnosed? Well, you know, it's interesting. You know, obviously there are some things, you know, like when someone's convulsing, people kind of recognize that as a seizure. But obviously with kids, sometimes it's that staring off, you know, and they have these kind of brief absent seizures or these brief seizures where they kind of just kind of fade out for a minute. Oftentimes in school, they're thought that they're not paying attention. And, you know, and sometimes You know, with the kind of more complex seizures, you know, people are thought that they're on drugs or something. But you know what I found recently, Joyce Bender, that because of the internet, which is a blessing and a curse at the same time, now people have the ability to, if they have some kind of symptom, to kind of Google it and see. And so what I found, like, you know, years ago it was like more common for people to be misdiagnosed. Kind of more now, sometimes people are overdiagnosing themselves, but I mean, it still happens. But like I said, with the internet, it seems to be less and less that it happens. But what I do know is that people don't understand seizures and they don't understand epilepsy and they don't understand what it means to have epilepsy and how debilitating this is. You know, because since people little kind of in-between seizures, you know, can look so normal to other people. They really don't understand the impact of all of a sudden, you know, losing consciousness or falling to the ground and waking up and have people staring at you, or the impact it has on your life, like how parents, you know, have to worry about kids going to school or going somewhere and having this happen to them and have people not know how to to help them. I mean, you know from your own experience, you know, that when you're older, the inability to drive somewhere, I mean, just has incredible impacts on your life. And I mean, you work with people with disabilities getting them jobs, and so that fact that, you know, people have epilepsy and there are many times that people won't hire them, you know, even though they're capable because they're concerned that at some point in time they might have a seizure. So that's what, you know, I mean, misdiagnosis is a problem, but really the inability of people to really understand the impact of this disease on a person's life and on the family is what's, I think, more discouraging.

Yeah, I agree with you. I do. I agree with you. You know, like me, for example, I had a temporal lobe seizure, and what would happen is I would fall down, and my friend Dr. Brian Smith would tell me, yeah, you have the first part of the tonic-clonic seizure, but I do not have a convulsion. And that is why when I went to the family doctor this misdiagnosis can happen. And he said it was just some female hormonal problem. This seems the answer. It's either emotion or hormonal problem for women. Actually, he told me, "And don't drink too much coffee." But of course, I still do. And here I am in a movie theater, fall down, fracture my skull, my bones in my right inner ear, which is why 70% hearing loss, brain surgery. And then that's when I find out I have epilepsy. But I am so lucky that I had such a miraculous recovery. I mean, really, it's unbelievable after what happened to me. But that's what I mean. Now, when I changed a medication, I started having like a complex partial seizure. And so, for all of our listeners, You may think everyone that has a seizure has a grand mal seizure, correctly known as a tonic-clonic seizure. That isn't true. More people have absence seizures and complex partial seizures and temporary falls and— I mean, I could go on and on. But not everyone has a convulsion. And as Pat said, especially to Mothers and teachers, I can't begin to tell you what Pat said is so true, how many times a student is told stop daydreaming and they're having a seizure.

Yeah, yeah, I mean it really is. And like you said, the other big problem is the risk of injury with all these seizures, whether it's a— you know, an absence seizure doesn't seem very bad, but if you're walking down the stairs, it can be very bad. So, you know, there are also— it's also people people who have seizures, you know, they're at a higher risk of injury than the general population.

Yeah, I'm an example of that. And you know, imagine having an absence seizure when you're driving a car. So yeah, that's right. It may seem like it's not serious, but it is serious. Well, Pat, you were starting to explain this. So in your current job, you still work with patients, but now you're like a liaison with the parents. And people, adults, guardians, whatever. Is that correct? Is that what you mean?

Well, I do a lot of that and I'm also a liaison with what my hospital has realized the importance of consumer groups like the Epilepsy Alliance and the importance that my hospital work with them so that they can provide the services that we don't offer here.

Joyce Bender. Well, yeah, that's right. And I'll tell you, Pat, you mentioned the Alliance. I want to talk about the Epilepsy Alliance because I am so proud we are part of it, but I am also so impressed with how it has become so strong nationally. It's amazing. And I wondered, would you mind explaining to our listeners what that is? What is the Epilepsy Alliance?

Okay. Well, the Epilepsy Alliance America, it was kind of officially launched on July 23rd, 2018. And what it was, it was founded by 8 organizations who were previously affiliated with the Epilepsy Foundation of America. And it was just kind of a— just a different— what we realized is that some of us were kind of— our mission was a little different. Where the Epilepsy Foundation of America was looking more to do some research for epilepsy and, you know, some very important— which is very important. But what we found out in our groups, our affiliate groups, is that we really wanted to continue to focus on programs and services in our own communities. You know, we wanted to be there. You know, it's very important to find out what the cause of epilepsy is to stop it in the future, but we really wanted to be an organization that focused on providing services for people in their community. So 8 of us were former epilepsy Epilepsy Foundation affiliates. And we started this organization and as you stated, you're Pittsburgh, you were one of us. And so we just work together to continue to find the best practices for people with epilepsy, the best programs that we can have for people with epilepsy. And along the way, we have picked up 11 more organizations that are a little different than our affiliate— that we but that are organizations that support people with epilepsy in different ways. So, and it's not quite— it's not organized in the same way that the Foundation was, but it really is a nationwide network of organizations working to improve the lives of people affected by epilepsy. And some of us all do various different things, and we're just really getting started. It, and we're patient-centric, not organization-centric. So, we are trying to identify and problem-solve to benefit all the members, and we really think that we're starting to make a real impact in the national scene.

Now, when you say 11 other groups joined, you're meaning— are you meaning a combination affiliates and other types of epilepsy associations? I mean, what do you mean?

Well, yes, like for example, one of the— like the Dravet Syndrome Foundation has joined with the Alliance. The Lennox-Gastaut Foundation has joined with the Alliance. There's an organization called Josh Provides, which is really kind of local in Florida, that does things like they fund detection devices and help pay for service dogs and they do fundraising for some of the things that people with epilepsy might need. So there are a number of organizations that have come on board and like I said, the more people hear about us that work with epilepsy groups, the more the more people that are talking to us about joining with us.

Oh, that is fantastic, Pat. Well, as all of my friends in the disability rights community know, I am on a mission for employment but also for disability rights. Disability rights are civil rights And my passion personally is for people also living with epilepsy. So I'm just so happy to hear that. But right now on the half hour, it's time for our news break with our favorite, Perry Jude Radesik, CEO of Disability Rights Pennsylvania. And Perry, just think, next year is my 20th anniversary and you will have been with me, I think, 5 years. And we're the the only one in the United States weekly giving an update on what's happening nationally in the news for people living with disabilities. Perry, welcome. What news do you have for us today?

Joyce, first, congratulations, early congratulations. Today we want to talk about the availability of a new COVID booster shot. COVID-19 is still out there. It's still an infectious virus. And, you know, we took a look at the numbers from November 16th, And in the United States, the average weekly new cases was about 40,000 new cases a day in the United States. And for a total for last week, it was 280,711 new reported cases of COVID-19. So it's not over yet. Wow.

And there's a—

that's a lot. That's still a lot of people getting COVID.

I mean, that's a big increase.

Yeah. So there's a growing concern with the holidays, right? Thanksgiving is in 2 days and winter's approaching that the number of new cases are just gonna increase. COVID-19 vaccines and boosters don't stop us from getting the virus, but it protects us from being seriously ill, being hospitalized or dying. So we are protected from COVID-19 when we stay up to date with the recommended vaccine schedule, including boosters. Now there's a new booster out there. It's called bivalent, bivalent, B-I-V-A-L-E-N-T. That's what you wanna look for, the bivalent booster. That protects against both the original virus that causes COVID-19 and the new Omicron variant. Which technically are called BA.4 and BA.5. Both Pfizer and Moderna have developed these new bivalent COVID-19 boosters. So you want to look for that when you get your booster. We know advocacy matters. Everyone who can get a booster shot should get a booster shot this fall. The COVID booster protects you and the ones you love, particularly those in the community, in our community, who may not be be able to get a COVID vaccine. Now, we have information about the current booster and how to schedule your shot by calling the Disability Information and Access Line. DIAL is funded by the Administration for Community Living, and it is for our community the primary vaccine access resource. So you can call call, text, or video phone, dial at 888-677-1199 Monday through Friday from 8:00 a.m. to 9:00 p.m. Eastern Time. Now, we have a link to dial for anyone who wants to start an online chat with an information specialist or contact an agent in American Sign Language. So what we need you to is go to disabilityrightspa.org, click on today's advocacy matters segment for all the information including how to connect with DIAL. Again, it's disabilityrightspa.org, click on today's advocacy matters segment to connect with DIAL to get information about the boosters in your area.

I have a question, uh, Perry. As you know, I know there are 5 booster shots now. So my question to you is, is this the same as the most recent booster shot that people have been getting, or is it different?

This is a different booster. The bivalent, the bivalent is a different booster because it protects not just against the original virus but the recent mutations in that virus. So if you only get— if you've only gotten your 2 shots and 1 booster, you should get the bivalent— the bivalent booster because that will protect you against the original and the 2 variants that are recent in COVID-19.

And if you're wondering why Perry is talking about this, our community, many people in our community are vulnerable because of compromised systems. So please take this seriously. Go to Disability Rights PA and go to Advocacy Matters and get that information. And Perry, we all want to tell you happy Thanksgiving, and I want to tell you thank you so much for doing this great job every week.

Thanks, Joyce, and happy Thanksgiving to you and your listeners.

Thank you very much. Have a great day. And Pat, you know, I mean, are they giving this shot to children? Are they giving this booster to children or only adults?

I think the booster is just for only adults at this point.

Mm-hmm. Yeah, that is really good news that she talked about. Very interesting, very interesting. And you know, Pat, I cannot imagine at all what you went through with COVID But before I talk about that, I want to say one other thing about the Alliance. The difference with the Alliance is Pat was alluding to, it isn't just research, it's on the ground working with people and families with questions or people that need medication or horrible, horrible SUDEP, which I will never understand why even I did not know about this till I joined the Epilepsy Foundation. And Pat, we didn't even talk about it for years at the Epilepsy Foundation.

Yeah, you know, it's really interesting. I mean, you know, even when I first got involved, I mean, we really always tried to downplay the seriousness of epilepsy. You know, there was so— you know, we had a lot of problems with stigma and all that, so we were trying to kind of get the message out that, you know, people with epilepsy are like like everybody else, treat them like everybody else. But in the meantime, we miss some of the really important things, like that it can be a deadly disease. It can kill, it does kill people. And people need to be aware of it. Like I think if, you know, one of the things that happened with Sue Depp for some people, like say young adults, is they stopped taking their medication. And maybe if people knew things like you could die from it, you know, that would change their health habits. So I think it was really something that we really didn't talk about for a long time, you know, but now we're talking about it. And again, like I said before about the internet, it's a blessing and a curse. So now when someone's diagnosed with epilepsy, you know, they look on the internet and, you know, a lot of times SUDEP comes up and now what I find is parents kind of come in and they can bring it up before you can bring it up. So I think, yeah, you know, there have been a lot of changes over time in the world and that's one of the things that we're talking about things now. We're talking about epilepsy. We're talking about seizures. We're talking about, you know, how terrible a disease it is and that one of the terrible things about it is that people do actually die from it. It's not to be taken lightly.

Well, SUDEP is an example of that. And I remember when I joined the foundation, I asked a neurologist, an epileptologist, why don't people talk about this? And he said, why would you want to frighten a mother that every minute of the day she's thinking her child could die from SUDEP? And I said, well, why would you not want her to know her child could die from SUDEP? So I mean, I'm hoping that has changed, Pat, and that more people do talk about it, but it is a— it's a real thing. It's a reality.

Yes, I certainly agree, and I think it is being talked about more, Joyce Bender, than back then. I really do believe it is.

Well, that's wonderful. I'm happy to hear that. Sadly, stigma still exists, and that's one of the reasons people with epilepsy and other disabilities have such a difficult time finding employment. But I had one other question about the Alliance. So, do you have then 11. Do you have almost 20 affiliates then?

I mean, organizations? Well, we have 17 members. Like I said, there were the 8 original affiliates that left the Epilepsy Foundation, and since then we've been picking up, like I said, different organizations. And we— that we're different, you know, that we're all— it's more like a consortium. It's not like the It's not run like the Foundation was. What we are is we look to identify and problem solve to benefit all of our members, okay? And what we know is that we're stronger together. You know, it's like you believe, Joyce Bender, people with disabilities, we're stronger together. You know, there are over 3 million people in the United States with epilepsy, and so people affected with epilepsy need strong, service-minded organizations in their local communities doing the best work So we provide a place for organizations to share, collaborate, and lift each other up while maintaining their independence and autonomy. So we are not looking to kind of make us all one homogeneous organization, but just kind of a group of organizations who are looking to help people with epilepsy in various different ways.

Yeah, that is, that is just, uh, that's just wonderful. So it is organized. Is there— there's a chair though, right? There's a board of directors, right?

There's a board of directors. There's a, um, uh, uh, uh, I just forgot the name, what I'm on. The, um, you know, doctors who oversee, you know, what we do. A professional advisory board. Sorry, I just had kind of a brain lapse for a minute. There's a professional advisory board. We have a CEO. So we are a regular organization. You know, we raise money. We have programs and services. One of the things that we have is we have a school nurse education program, you know. You know, it's a recognized national program for training school nurses about epilepsy and how to deal with kids in school with epilepsy. So we have a— we're the real deal, Joyce.

Oh, and I'm so excited and so proud of all of you. It is amazing how strong, you know, you have become and continue to grow. If someone is interested in joining, what should they do?

Well, they could go on the website of epilepsyallianceamerica.org and they could— on the website they will see a way to— if they're an organization that's taking care of patients with people with epilepsy, it will tell them how to join and become a member of this organization.

Well, that is awesome, and I hope if you're listening and you're an organization, you will do that. Pat, I want to move now to Miami. You have been involved with that affiliate how long?

Well, a little over 30 years.

Wow. Right.

Wow. I know.

When was it founded?

I think we're like 50 years old. The organization is 50 years old. You know, a lot of the epilepsy organizations throughout the country were actually started in somebody's kitchen by parents of kids with epilepsy. And that's how it started in Miami and in other places in Florida. And initially, we were all— in Florida, we were all individual organizations. We were in Miami, we were in Broward, we were in Palm Beach. But, you know, but now we are the Epilepsy Alliance of Florida and we have offices in Miami, Broward, Palm Beach, Gainesville, Ocala. Jacksonville, Pensacola. So we are pretty much all over the state. And again, what we do, our tagline, Joyce, is the power of local because that's what we're here to— we're here to serve our individual communities of people with epilepsy. In Florida, we've been kind of lucky. We get some money from the state to be able to provide some basic— for case management and some basic medical services and we can help people get medication. So we're kind of lucky like that in Florida. All states aren't that fortunate. But yeah, you know, we really, I think, make a big impact on the care of epilepsy in the people in the state of Florida.

Yeah, what are some of— go ahead, I'm sorry.

No, go ahead, go ahead. What are some of the—

I was going to ask you, what are the main programs? So that one I love that you talked about is teaching the nurses. Oh my God, that's so wonderful.

Well, you know, recently, Joyce, in the state of Florida, the Epilepsy Alliance helped to get a bill passed that says that if you have a child in your school with epilepsy, anybody who has direct interaction with the child, the teacher, the coach, a bus driver, whoever is directly involved in the management of the child at school has to have taken a class on epilepsy, has to know seizure first aid, know how to intervene in the— if someone has a seizure, and if necessary, know how to give rescue medications for epilepsy. So those are the kind of things that we do. We work with the legislators to make sure that our kids are made safe in school. And so this has really impacted the school nurses. So I have to tell you, I have given a number of school nurse talks over the summer and actually I still am. And the department— we're working with the Department of Education here in Florida to get all the school personnel trained in epilepsy. So that's been kind of exciting.

Oh, that is wonderful, Pat. Wow.

I love that. You know, in all fairness, in full disclosure, a number of states, 20 different states, have laws on the books that say this about people, kids in school with epilepsy, that they need, the schools need to have had training and know what to do for seizures. And in a lot of the other states, it's in the legislature, in the legislation waiting to be passed.

Wow. You know what I mean though? Everyone listening, you know, I always say one person can make a difference. Obviously there was one person or one family that made a huge difference 50 years ago and even 30 years ago, Pat. Wow. Don't you see a big change in how people feel about epilepsy epilepsy?

Oh yeah, I mean, it's certainly getting better. It's certainly— we're hearing more about it than before. And what also I am seeing since I am in the— taking care of people with epilepsy personally and involved in these different epilepsy consumer groups, now we're working more together, you know, as a community, as the epilepsy community to really get the word out and make our disease known to everybody, how important it is and how important it is to support people with epilepsy. So I think it certainly has changed and for the better. But Joyce, we still have a way to go, as you know, working with disabilities. We've gotten so far, but there's still so far to go.

Yeah, there is still so far to go. Peggy, who is Peggy Beam Jolly, who's wonderful, who is the CEO of the Epilepsy Association of Western and Central PA, and our former CEO Judy Painter often would tell me stories about how there was a time that when they would send information to a family or someone living with epilepsy, it had to be in a brown envelope because they did not want anyone to see the word epilepsy on the envelope.

Yeah, and I mean, it's much better now, but there are still, like you said, the stigma still exists. You know, there were certain occupations. You know what, like remember years ago that child actor died from a seizure? You know, he He, I think, sued Depp, actually, is what he died from. And nobody at Disney— he was a Disney actor, and nobody at Disney knew anything about it because in, in a career like acting, you know, they did— he didn't want to— he didn't want to reveal that because he thought that would hamper his chances of getting jobs. And there are still a lot of places where, where people have to worry about about that, you know? And in schools it was a big deal. I can remember the first school that I went to to give a talk, they weren't letting the child play during recess because they were afraid he would have a seizure. And, you know, I had to go and talk to them and tell them that they were actually punishing him for having seizures by not letting him participate, you know, with the other children. It's better, but it's not over. The fight, we still have a fight left to fight.

Oh, I know. I mean, I know people, they will not tell anyone, but usually those are employees, but they also would not tell anyone that they have a mental health disability or other disabilities because they're afraid that they will be, you know, discriminated against. And then students with disabilities are bullied more than any other group.— and just imagine you're in the 7th grade and you have a convulsion in the hallway. I mean, imagine that. So hard.

Yeah, it's so hard. It is so hard. It is. It's hard for these people. And, you know, for everybody with disabilities and people who don't have disabilities or loved one with disabilities don't realize how every day is a fight. You know, every— you know, there's so many obstacles that are put in their way, whether whether it's people's attitudes, insurance companies, government services, there's always something that they have to overcome. So, I think that people who have not been around it really don't have a good grasp of what it entails.

I agree with you. So, what would be your advice, Pat, for things we can to try to end that stigma? I mean, would you say like how you're trying to educate people that that would be a big part of it? What do you think?

Well, certainly educating people about the problems, what epilepsy is, what disabilities are, you know, is what we have to continue to do. Like, you know, if we continue to work together, right, all of us, you know, all of us in our community, because we are stronger together. You know, the more of us that are out there saying, talking about it, the better it will be. I mean, I think that's the only thing we could do is just continue to talk about it and to try to encourage people who have disabilities not to be I hate even calling them disabilities, you know, who have situations, not to hide from it, but to be proud of themselves for who they are and to recognize that they have as much as a right to do anything as anybody else.

Well, I have good news for you, and that is that word has become positive because of the disability rights community. It has become more of a cultural word. And wow, it's young people, young people with disabilities are on fire about disability rights being civil rights. But there was a time that it, of course, was not like that when you talked about people that were handicapped. You know what I mean? There was a time like that. So, Pat, over the years in nursing, Did you ever imagine anything like COVID? And what, what was it like? What did you go through?

Well, obviously I don't think any of us imagined anything like COVID, but certainly in the field, in the hospitals, you know, one of the issues that, you know, that happened, you know, I was in— I'm in pediatrics, and fortunately we didn't see the same— not Not that we didn't see COVID, we did. And not that we didn't see any deaths from COVID we did. But it wasn't at the level that in the adult facilities. But I can just share with you from, you know, some of the things that were just terrible was that how doctors and nurses were sometimes treated, you know, in the emergency rooms when people came in and didn't believe there was such a thing as COVID and were cursed out and just really abused. And obviously the hours that people had to work during COVID or that people were let go of work, like that were furloughed or let go from work, people who worked in the hospitals, because the problem is that the hospitals weren't— they were seeing emergency patients, but they weren't seeing like normal clinics and normal testing. And the other problem was like that we had with epilepsy is, you know, people would seizing and they didn't want to come into the hospital. So all these kind of things happened, you know, that, you know, healthcare was kind of stifled. I mean, it was— everything was COVID, COVID, COVID. And that was terrible because, like we said, so many people died, so many people have long-term problems secondary to COVID. But it also hampered people being treated normal medical care for things that needed normal medical care. And And the other thing, the worst part of, not the worst part about it, the worst part about it is obviously that people died. But another really terrible problem with COVID now is the amount of medical people that have left the profession. And now what we see in hospitals is lack of staff because so many people decided it was such a hard thing to go through, either just the, The trauma of taking care of all these patients that were dying, and you were the only one with them. They couldn't be with their families, and the trauma of going through that, and then just deciding that, you know, that was it, they've had enough and left. So now we're left with— you know, you asked me if I was still working, and yeah, I'm still working because they still need me, because we don't have— you You know, there, there just aren't enough. A lot of us have left the field, and, um, so some of us have to stay and carry the torch. So yeah, that's the biggest impact of COVID you know.

Oh, it was terrible. I mean, it still is, but it was terrible. I mean, horrifying.

It was terrible.

Horrifying. Uh, and Pat, I just want to thank you because you are one of those people that was on the line. I even remember this one night talking to you, and they called you to go in, and you said to me, "There is no way I can't go," and you went. And I admire you so much, and I thank you for what you did, because oh my God, it was It was terrible. It was absolutely, as you said, none of us could possibly envision. It was like a plague, a worldwide plague. And never did I think, Pat, it would go on this long. Never. And never did I dream there would be this long-term COVID and everything that has happened. But I want to thank you and just say that you're a hero to— heroine to me. And listen, anyone listening right now to the show, if you think, oh, I want this other family to hear this and this is really important, just go to benderconsult.com or Spotify and you can hear the old shows and share it with someone else. But I know we're getting ready to close, so Pat, thank you so much for being with us.

Thank you for Having having me. me, Joyce. Thank you so much, and thank you for everything you do, because you do an awful lot too.

Well, thank you. And we end every show with a quote, and today that quote is, "When you get a chance to take the podium, speak up," said Tony Coelho. This is Joyce Bender. America's Voice: Where Disability Matters at voiceamerica.com. Happy Thanksgiving, and in the words of Mary Brooker, choose joy.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11:00 AM Pacific Time 2 PM Eastern time for another installment of Disability Matters, right here on the Voice America Variety Channel. We are the leader in live internet talk radio. VoiceAmerica.com.