Learning and Epilepsy

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“Coping with the Holidays with information provided to families in crisis” by Lacey Wood

Lacey with husband Joe and son Ryan at recent purple pumpkin day

Lacey with husband Joe and son Ryan at recent purple pumpkin day

As the song states this is “The most wonderful time of the year”, but there are still so many things that actually make it the most difficult time of the year.  For someone who has epilepsy, maybe along with a mental health condition or maybe a parent who has a child newly diagnosed with epilepsy, the holidays are the farthest thing from your mind  as you and/or your family may be struggling to deal with all that epilepsy has brought to your life and that of those who love you.

Here are the Epilepsy Association’s Top 3 Tips for Coping with the Holidays:

1. Take medication as normal. Holidays are busy times and it is easy to forget to take medication. Set an alarm for or find a creative way to remember to take medications.
2. Get enough sleep. Sleep is important in managing epilepsy. Keeping regular sleep patterns can assist in getting enough sleep despite all of the excitement and daily happenings.
3. Avoid alcohol. Drinking with medications can reduce the medications effectiveness which could increase the likelihood of a seizure.

The Epilepsy Association focuses on the strengths that each person has to empower them to make positive change in their lives and live more independently. If epilepsy affects you or your child, then the Epilepsy Association can help with the following programs:

  • Adult Case Management Program- Case Management services for adults who have epilepsy as well as a mental health condition. A one on one service with a qualified case manager, who is trained in epilepsy and mental health, to assist with the barriers that these conditions present in a person’s daily life, such as; benefits and entitlements, advocacy, doctors’ appointments, epilepsy education, and mental health treatment interventions.
  • Kids and Families Program- Support for the entire family where there is a child diagnosed with epilepsy.  A needs assessment is completed for everyone in the family to ensure that all members are supported.  The program provides connections to community resources to assist each individual within the family to cope with an epilepsy diagnosis.
  • Adult Support Group- Support group that meets the second Wednesday of each month at Lake West Hospital to provide support to adults with epilepsy as well as  support for other adults who support them.
  • PIKES (Parents Inspiring Kids with Epilepsy and Seizure Disorders) Parent Support Group- A support group for parents of children with epilepsy.  Parents come together to meet the second Tuesday of each month at the Parma Library to provide  support to each other as they work through the challenges of having a child with epilepsy.However you choose to spend the holidays this year the Epilepsy Association hopes that you have a wonderful and safe season!
    Medicaid is accepted and a sliding fee is available.
    Holiday closings: December 24th, 25th, 26th, 31st, and January 1st and 2nd.
    2831 Prospect Avenue, Cleveland, Ohio 44115
    Phone: 216-579-1330
    Hours of Operation: Monday through Friday 8:30 a.m. – 4:30 p.m.
  • Visit us online at www.epilepsyinfo.org
    Follow us on Facebook and Twitter

The Epilepsy Association is a non- profit organization serving individuals with epilepsy in Northeast Ohio

Lacey is the Epilepsy Association Director of Community Programming

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Beyond the Storm

 

Epilepsy Association 2831 Prospect Avenue Cleveland Ohio

Epilepsy Association
2831 Prospect Avenue
Cleveland Ohio

Anyone who lives with epilepsy understands how stigmatized epilepsy makes people feel.  We ask, where is our national spokespersons or why don’t we see media campaigns about epilepsy?  After all, the prevalence of epilepsy makes this neurological disorder a major public health problem.  Epilepsy is not benign.  As many as 50,000 people a year die prematurely from the consequences of seizures.  That is more than die from breast cancer.

I am at an age where friends frequently share stories about high blood pressure, diabetes, cancer and other illness, but never once have I heard anyone talk about epilepsy in public, even when I know they live with the disorder.  Yet, I have had many experiences where people, once they knew where I work, share quietly that they have epilepsy, as if to say, “I wish I could talk about this.”

Two years ago, the Epilepsy Association in Cleveland decided to help people talk about epilepsy.  With the help of some very generous Clevelanders, we commissioned Katherine Chilcote to paint a mural about the journey of epilepsy.  We then installed her 32 foot by 10 foot work of art on the outside of our building.  We did this to tell the story of epilepsy, generate awareness of the Epilepsy Association and to give persons with epilepsy a place in the community.  We felt art accomplishes these goals.

To conceive of the imagery, Katherine interviewed 34 individuals in Cleveland and Seattle who live with epilepsy, and she conducted one community charrette (a planning dialogue) during the spring of 2014 in Cleveland.  Through this process, Katherine gained insights into the shared experiences of living with epilepsy.  Her mural, “Beyond the Storm” reflects these shared experiences.

The mural’s imagery describes a voyage or journey that moves people beyond the circumstances of their health condition and life’s circumstances.  Katherine was inspired to paint images of birds and tornados as a reflection of the physical experiences of seizures.  Moving beyond these experiences are expressed through a vast horizon in the painting.

Katherine came to understand that living with epilepsy means being prepared to live each day anticipating seizures and overcoming the fear of the obstacles they create. Through this project, she hopes we come to understand that health obstacles give us an opportunity to grow into stronger people.  During the interviews, she heard a common expression of knowing one’s own strength to withstand the neurological storms of seizures and to move beyond these episodes. She heard that coping with the paradoxical realities of being one person while seizing and another while healthy were different for each individual.  And, she discovered that while epilepsy presents many commonalities, the epilepsy journey is uniquely experienced. For some, the condition is a minor distraction, while for others it presents huge obstacles.  It is a paradoxical life to be lost then found, and to be sick then healthy over and over again.

What Katherine wants us to realize through this work is that all persons with epilepsy have a powerful ability to accept oneself amidst a world that in uneducated about epilepsy, and often reacts cruelly based on the ancient stigma associated with the condition.  She thinks of this mural as a prelude, or wake up call, for the work needed to create a more accepting culture.

A few weeks ago, on a very cold  day, an idea that began many months ago finally became a reality.

Katherine Chilcote finishes installation of "Beyond the Storm"

Katherine Chilcote finishes installation of “Beyond the Storm”

Katherine installed “Beyond the Storm.”  This spectacular mural is her gift to the city, and to all those with epilepsy.

The following individuals/foundations contributed to the project and the Epilepsy Association is very grateful for their support.
The Char and Chuck Fowler Family Foundation,  Amy E. Kellogg, Frank H. Porter Jr., J. Patrick and Diane Spirnak, Tuni and Lee Chilcote, Kathy and James Pender, Reginald and Lynn Shiverick, Medical Mutual, Kitt and Mark Holcomb, Paula Sauer.  The project was also supported by:

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We invite you to come see the mural at 2831 Prospect Avenue, Cleveland Ohio.  We also invite you to share your story by leaving a comment.  What do you think the images in the mural mean?

 

Written by:  Andrea Segedi

Andrea is on staff at the Epilepsy Association in Cleveland, and worked with the volunteers, donors and Katherine to create this mural.

 

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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.