School

Amazing Kid Alert!
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Amazing Kid Alert!

As a 5th grader in the Hudson School District, Camden Frank was assigned to do a Passion Project.  Camden selected to use epilepsy for his topic as he has a family friend recently diagnosed and has seen how fear of the unknown and fear of the future took over this family.  Camden went above and beyond his assignment by preparing a 24 minute documentary on epilepsy.  He included information about seizure types, diagnosis, medications, and seizure first aid.  Camden used his entire 5th grade school year to produce this documentary.  He conducted interviews with epilepsy professionals as well as individuals living with epilepsy.  He did this all on his own while his mother filmed the interviews and drove him to where he needed to be.  It took Camden 3 attempts to make his documentary before finally being satisfied with the product.  His first was created on his iPod Touch and it was 5 minutes long.  He felt that it did not show the full picture of epilepsy.  The second was completed on his laptop and was ten minutes long.  He was still dissatisfied and did not feel that enough was presented in that time to help others understand the significance of epilepsy.  His final version was presented to the Epilepsy Association staff on June 16th.  EA staff were moved and in awe of his project and the kind and talented person that is Camden.  He was supported that day by his mother and sister and you could see the pride radiating from them.

Camden and his sisters had a lemonade stand in their neighborhood and raised $100 for the Epilepsy Association. Camden presented this check to Kelley Needham, CEO of the Epilepsy Association following his video presentation.  Camden and his sisters are planning on having 2 more fundraising lemonade stands for the Epilepsy Association. 

Camden is one in a million.  He truly is an amazing kid as he so generously spreads epilepsy awareness and education.  He is a true role model for children of all ages and we are honored to share the same passion for epilepsy and epilepsy awareness. 

Congratulations Camden on a job well done!

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March 26th is Purple Day, Epilepsy Awareness Day

Purple Day is Epilepsy Awareness Day

By: Beth Nuss

When my daughter Taylor was diagnosed with epilepsy I felt like it came out of nowhere. The seizures started subtly and went unnoticed for several months; still we knew something was wrong. Taylor was forgetting her homework, going to bed in her day clothes, and wearing the same outfit two days in a row. None of that would be considered normal behavior for a thirteen-year-old girl. When I spoke to the pediatrician about these occurrences, even she didn’t immediately suspect epilepsy. Even after a battery of tests, including an EEg, her condition couldn’t be labeled as epilepsy because there wasn’t any hard evidence.

 Finally one day we observed a seizure for the first time. I can only describe it as a short period of time where she was unaware of her surroundings followed by lip smacking and picking at her clothes. These seizures became more frequent and more pronounced as time went by. Eventually the evidence made it clear that Taylor had epilepsy. She was treated for the next eight years with many different anti-epileptic drugs, each of them failing after a few months of use, while the seizures became worse and very noticeable. I was fearful that she would get hurt.

 School work became an exhausting chore. Her memory grew increasingly worse as the seizures continued and the mind numbing drugs made her inattentive and tired. The school listened to my concerns and tried to understand but they were not equipped to deal with a child with epilepsy. They had never dealt with it before and were completely unaware when Taylor was seizing in school but I knew it was happening. After seven years of seizing at home sometimes ten to twenty times a week, it’s impossible to think that it never occurred between the hours of 8am and 2pm Monday thru Friday. I would like all teachers to be trained to notice when children in the classroom are behaving strangely, attempt to identify what is happening and report the actions to the child’s parents.

 I feel like there is a general unawareness of what epilepsy is and how it affects patients and their families in our society. Countless times I tried to explain to people who ask, “how’s Taylor doing?”, that the meds aren’t working, she’s still seizing, she has trouble learning, she can’t remember, she’s tired all the time, she doesn’t laugh and smile like she used to, she can’t drive, she can’t swim, etc. etc. etc. It is hard to understand when you don’t live with it daily and have never witnessed a seizure. And that’s one of the reasons I would like to bring more awareness to epilepsy.

 Fortunately Taylor was finally able to have epilepsy surgery and has been seizure free ever since. Her two-year anniversary is coming up on March 26, 2015, on Purple Day. She still takes some medications as a precaution but her activity level, confidence and overall disposition is markedly better. Our family will celebrate Purple Day together at The Harp with the Cleveland Epilepsy Association and we will continue to support the many families in our community struggling to come to terms with the diagnosis of epilepsy and the enormous challenges it brings.

 

 

 

 

 

 

 

 

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Calling all teachers — measuring students’ intelligence

From the editor: Students with epilepsy do poorer in school when compared with students managing other chronic medical conditions, even when the epilepsy is well controlled. There is much speculation as to the reasons why this occurs. Blogger Amy Mittinger shares her experiences of being a student and living with epilepsy. Amy is a recent graduate of The Ohio State University.

The Epilepsy Association has developed resources to help educators facilitate the best learning environment for the student with epilepsy. Our programs are free of charge.  Presentations for faculty meetings require only 30 minutes. Classroom programs are available for grades K-12. Additionally, The Be SMART About Epilepsy resource is available for free download from our website. The program provides chapters for every adult in the school setting including bus drivers, safety personnel, coaches, nurses, teachers, aides, and social workers. For more information, please call the Epilepsy Association at 216-579-1330, or e-mail info@epilepsyinfo.org.

We invite you to share your experiences with living with epilepsy. For more information, please contact us at blog@epilepsyinfo.org.

Amy Mittinger with Father at her OSU commencement

Amy Mittinger with Father at her OSU commencement

Calling all teachers — measuring students’ intelligence

If a student aces a test about the periodic table, history dates, or on Spanish vocabulary, that is undoubtedly impressive. But think about it: is that a measure of their intelligence? Or just their memory?

I never challenged this incongruity in the past as a student. If anything, I used it to my advantage. I read course content, memorized it, regurgitated it on tests, and wah-lah! The “A”s were returned in hordes.

But notice that the term “learn” didn’t appear once in that process. Only after developing epilepsy in tenth grade did I notice this, and then encounter a problem. I experienced seizures in a part of my brain that inhibited not my intelligence or even physical stability, but just my memory. So, the goal of memorizing and reciting information on tests became less reachable in high school. And almost impossible in college. To worsen things, every class consisted of nothing but lectures and tests. So, like all students, my grade was measured by nothing but continuous recitation of facts on Scantron sheets.

I was never given the option to prove my intelligence in other ways. This left me no choice but to introduce, even defend, myself to professors as the “memory impaired” epileptic student who needed assistance taking tests.

I’ll save you the specifics, and summarize that more often than not, I lost the battle. It was disheartening. I failed to prove my intelligence to people who never even attempted to understand me initially. And my grades suffered as a result. I had to repeat a couple classes due to receiving failing grades. (Again, grades based on nothing but a total of two cumulative exams, mind you.)

So, what’s my point? It isn’t to fight my teachers, the “bad guys.” Rather, it’s to help them distinguish between all students’ memory and intelligence… and stress that one (memory) should not define the other (intelligence). I know that for some students, the two may coincide perfectly. But for others like me, when the two are off balance, adjustments should be made. And there are a variety of options for this: open-book timed tests, essay tests, class projects, and more.

Such adjustments are both feasible and doable. Not to mention that actual learning takes place more frequently here than via cumulative exams. So teachers, I’m calling on you to bridge this gap and make it happen… for your students.

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Our Connection with Epilepsy by Lynn Shiverick

sheverick family gala
Shiverick Family at Gala. From left to right Reg, Lynn, Louise and Parker

Editor’s Note: The Legacy Award is given each year at the Epilepsy Association annual Gala. The award recognizes individuals and organizations for outstanding support of the Epilepsy Association and for contributions to increasing the community’s awareness of and response to epilepsy. This past November, the Epilepsy Association was thrilled to present Lynn Shiverick with the 2013 Legacy Award.

Lynn was honored for her contribution to epilepsy awareness and for her years of service on the Epilepsy Association Board of Trustees.

We encourage you to find out more about the Epilepsy Association resources, especially the programs for schools that Lynn mentions in the following family story.

My husband Reg and I have four children, now ages 19 to 27, but it is because of our third son, Parker, that we are a family with a connection to epilepsy.

Parker was diagnosed with epilepsy when he was six years old. It was then that we could clearly identify that he was having partial complex seizures, and it explained a series of earlier frightening episodes and behaviors that we had just not understood. He was started on medication, and the following year we moved to Cleveland.

That year turned out to be a really tough one for Parker and for us – during the year, he had 17 or 18 seizures, and they seemed to be getting worse. His first medication also made him dizzy, tired and kind of dazed. We had a lot of worry – about his safety, the long term quality of his life, what his options would be, how his learning was affected, would he be dependent, would he ever be able to drive, could he swim, play on the jungle gym and this is when I really learned about the particular challenges of people and families living with epilepsy.

I was introduced to the Epilepsy Association by Max Wiznitzer, Parker’s pediatric neurologist at University Hospitals. Dr. Wiznitzer is a wonderful man, incredibly caring. He’s what I would describe as a “whole patient” kind of doctor. At our very first appointment, after reading the notes and examining Parker, he turned to me and said “What do you know about epilepsy?” And the answer then was that I knew very little. He suggested the Epilepsy Association as a first stop resource. Since epilepsy is the kind of condition that affects an entire family, I really gave him credit for being the kind of doctor who pushes parents to learn as much as they can about the disease, their choices and resources.

Initially I contacted the Epilepsy Association as an educational resource, but quickly discovered that the organization was much more than an information source. It is also a service organization dedicated to helping people with challenges such as issues with employment, medicine and medicine cost, transportation, support groups, and education.

One of the school programs that I was really grateful for was the Puppet Program, where Parker’s classmates were presented with a Puppet Show explaining what a seizure is, how to respond to someone having a seizure, and informing his teachers about epilepsy and what to do in the event of a seizure. Parker did have seizures at school and twice on the basketball court when we were not there, so I appreciated the value of this resource for educators and school personnel.

Parker began taking a new medication when he was in grade school, which works beautifully for him and he basically has been seizure free ever since. He is now 22, an engineering student, also a talented musician, and he drives with a restricted license that is approved by his doctor every six months. We think he will be on medication for life but we consider ourselves very lucky that his seizures are under control. It doesn’t work that way for everyone.

I joined the Epilepsy Association Board soon after learning about the organization, and then chaired the Gala party for several years. I also chaired the Development Committee, and did what I could as an advocate. I think in the beginning it was my way of doing something to help Parker; but the more I learned about the challenges of people living with epilepsy, particularly those without the resources I had, it became important for me to continue to help and stay connected.

Epilepsy is truly a terrible, really limiting condition when it is not well controlled, and the Epilepsy Association does great things to help. I think when you have a personal connection to something like epilepsy (and there are others), and when that connection has made you learn that adults, kids and families are really challenged and struggling, the responsible thing to do is to help where you can. It’s important to support the work of non-profit organizations. Fortunately, we live in a community nationally known for its philanthropic support.

I was honored to be chosen for the Legacy Award, but I think it is not really about me. It is about increasing awareness, and support for people and families living with the challenges and limitations of epilepsy.

This coming January 18th, the Epilepsy Association is sponsoring the 9th annual Winter Walk for Epilepsy. This annual fundraiser is a great way to become involved, to meet others with a connection to epilepsy and to find resources. I encourage you to click here for more information about this fun, family friendly and indoor event!  The walk will be held at SouthPark Mall in Strongsville and Great Lakes Mall in Mentor.

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Welcome to the Epilepsy Association Blog

3-1Kelleycompressed

I am pleased to be writing the inaugural blog for the Epilepsy Association . I hope you will visit often, and find this blog site a place where you get useful and practical information about things that matter to those affected by epilepsy and seizure disorders . There is still so much that is unknown about epilepsy, and many people living with a diagnosis of epilepsy feel that they are alone on their life journey. We want this blog to provide—a lifeline for this journey. We hope this site is a source of information and inspiration.

As the CEO of the Epilepsy Association, it is my distinct pleasure to speak on behalf of those in our greater Cleveland community living with epilepsy. These remarkable individuals and their families work to overcome the difficulties and struggles that epilepsy can bring — and in spite of the seizures, they persevere and lead meaningful lives. Time and again, we receive calls from individuals who are discouraged and looking for ideas to address a problem at hand. They reach out to us to make a connection and gain support. We provide the support they need, and help these individuals leverage that support and encouragement to change their situation.

Dear reader, know that you are not alone and there are others who care about and share your experiences.

To learn more about the Epilepsy Association and the services we provide, please visit our website, our Facebook page or our Twitter feed.

~Kelley S. Needham