Joe is a client that sought out services with the Epilepsy Association last year after a lot of encouragement from other people in his life. Joe was struggling being out of work after a stressful departure from his last job due to seizures and anxiety issues. When Joe first started working with a case manager from EA, he struggled with issues on what his next step would be in life. Joe also struggled with relationships and trying to gain a sense of independence. Joe took several positive steps for himself during the next several months by being more open in relationships, seeking out career assistance, and using positive coping skills to manage his anxiety. Joe participated in the Employment Seminar put on by the Epilepsy Association in March of 2014 to help improve his resume building skills, interviewing skills, and learn more about his rights as a person with epilepsy in the workforce. Today, Joe is employed in a full-time position, living independently, and continuing to find new skills and aptitudes for himself. He is currently enjoying painting and says that it helps him therapeutically by being able to learn a new skill and express himself in a different way. Joe is just one of the many successes that come out of the Adult Case Management Program at the Epilepsy Association. He has shown great aptitude and initiative in working through the barriers placed in his life due to his epilepsy. Joe has worked very hard along with his case manager to make positive change in his life. Congratulations Joe!
Tina has been a client of EA since fall of 2014. Tina’s family struggles significantly with finances and making sure that they have all that they need. Several individuals from Upsher-Smith pharmaceutical company wanted to help someone in need for the holidays. Out of their own pocket they donated money to a pit and reached out to the organizations that they work with for nominations of a client/family in need. Each person took their story to the group and a vote took place. Tina’s family won the vote and her family received a gift of money to help make the holidays special. Tina is newly married and has fourteen-year-old twins, a sixteen-year-old, a twenty-year-old son who is developmentally delayed, and a twenty one-year-old daughter who just got a new job and is finishing her GED. Tina’s agency worker presented this gift to her the week before Christmas and explained who it was from. Tina was so overwhelmed and grateful for this gift because she said that it meant that she could give her whole family the Christmas that she wanted for them that would otherwise be impossible due to her financial situation. Tina’s overwhelming emotion over receiving this gift was so touching, because she is so deserving of it. Tina’s agency worker assisted her in shopping for gifts and food for her family for Christmas and helped her make a list and follow the budget. Tina chose to buy practical gifts for her children since they needed new items like socks and underwear. After the shopping was done, Tina expressed that she wanted to make it a surprise for her family so she and her worker brought everything into her house without the rest of the family and hid the gifts from her children so they would be surprised on Christmas day. Tina’s family woke up on Christmas morning with gifts and a beautiful Christmas dinner all because these few individuals showed the true meaning of Christmas. In Tina’s mind these generous people are “Christmas angels” and will forever be in her heart.
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
Hours of Operation: Monday through Friday 8:30 a.m. – 4:30 p.m.
- Visit us online at www.epilepsyinfo.org
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The Epilepsy Association is a non- profit organization serving individuals with epilepsy in Northeast Ohio
Lacey is the Epilepsy Association Director of Community Programming
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 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:
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.
This is my sixth blog for the “Insights into Epilepsy” website. I have intractable epilepsy and over the last twenty years I have had break through seizures, with varied frequency and intensity. There is something really cool going on this fall at the Epilepsy Association. They have commissioned Cleveland Outdoor Muralist Katherine Chilcote to paint a forty foot-long by eight foot-high mural that will be placed on the east side of the association office building. The purpose of the mural is to increase awareness about epilepsy, bring attention to the agency and contribute to the revitalization of the neighborhood, by depicting the life experiences of people who live with epilepsy.
In order to help the artist complete the mural, the agency held a charrette, which is a community meeting or focus group where the stakeholders of a project get together and find a solution to an issue at hand. The people who attended shared their life stories and experiences living with epilepsy. This meeting helped Katherine create the imagery that is expressed in the mural. The mural depicts a public expression of the life experiences commonly shared by people who suffer from epilepsy. This fall you should drive by the Epilepsy Association offices and take look at the beautiful mural that Katherine is creating.
The agency has not yet reached its funding goal for this project. If you are interested in donating, make your checks payable to the Epilepsy Association and mail to 2831 Prospect Avenue, Cleveland, Ohio 44115-2606. For more information contact the Epilepsy Association: Andrea Segedi, Director of Special Gifts & IT, (216)579-1330 or email her at email@example.com
If you need information about epilepsy or know someone who needs help coping with epilepsy, the Epilepsy Association of North East Ohio might be able to help or let you know where you can get help. Give them a call at 216-579-1330.
Editor’s note: Several months ago, I had the privilege of meeting Kenneth and Romena Lawrence. The couple recently lost their son Keenan due to epilepsy. The Lawrence’s have chosen to remember Keenan by setting up a memorial fund in his honor Through this loving tribute to their remarkable son, they hope to support other parents raising a child with epilepsy. This month we are sharing Kenneth Lawrence’s tribute to his son Keenan by sharing some of his remembrances.
You asked me if I could give you some information about Keenan. There is so much to share, but I’ll begin Keenan’s story at the age of 11 when he started having seizures.
When Keenan realized what epilepsy was, and that he would live with epilepsy the rest of his life, he got very depressed. One day he asked me how I would like to be like him. I responded, “What do you mean?” He said, “I’m a freak.” That just hurt to hear, in fact, it wounded me. Not knowing what to say, I tried to give him some encouraging words.
That night I prayed for God to give me the wisdom and knowledge to let my son know that he was not a freak. When I woke up the next morning, something told me to go to the computer and Google “Famous People with Epilepsy.” Hundreds of pictures of famous people popped up. I was so excited that I woke Keenan up to show him what I had discovered. That day, I left him on the computer and when I got back four hours later, Keenan was still there. He told me that he wanted to read about everyone. I’m sharing this story because after that point, Keenan never looked back. Everything Keenan attempted, he mastered.
When Keenan was 8 years old, he invented at board game called Dice Cards. If you would like to see an infomercial on the game, just Google Dice Cards by Kenny Lawrence. The game is very entertaining. Please keep in mind he was only 8 years old when he brought this game to the family.
Keenan showed an early interest in electronics. At age 12, he found the very first video game that we bought one Christmas for Keenan and his older brother. The game, Sega Genesis, wasn’t working and Keenan told me that he wanted to try and fix it. I said that it would be good practice for him. I remember coming home from work and finding Keenan in his room working away. After about a month, I started to feel sorry for him, and thought maybe I should jump in and help him out. Then one day, he told me that he fixed that game! We went upstairs to his room, and sure enough, he had the game working. We played that game all night long. I went to school for electronics and was amazed at the troubleshooting techniques Keenan used. He diagnosed the problem with the broken game as if he were a certified technician.
When Keenan was attempting to get into college, he needed an admissions letter from his doctor. I was shocked when I got the letter. It read as if Keenan were mentally retarded. We never showed Keenan the letter. Instead, I made an appointment with his doctor to let her know that for the last three years he was an honor roll student. She had seen Keenan for eight years and did not know what was going on with him. The doctor agreed to rewrite the admissions letter, and with her more favorable endorsement, Keenan entered college without any restrictions.
Keenan first went to a junior college, which he didn’t like very much. He kept telling us that he wanted to go to a technical school. We encouraged him to stay two years in a junior college, and then agreed to send him to ITT Technical College. This is when Keenan started accelerating academically. Keenan was on either the dean’s list or the honor roll the entire time he was at ITT. During his last two years, he tutored many of his classmates who were of different ages and races.
When we lost Keenan this past January, he was just a few months away from graduating with his Bachelor’s Degree in Electronic Engineering.
I’m not sure how we will ever get over losing Keenan so early in his life. He worked hard, overcame so much, and showed great promise. To make sense of everything, we called the Epilepsy Association to see how we could help others. This is why we started the Keenan Lawrence Memorial Fund. We want to help other parents see the promise their children have too. When we first learned of Keenan’s epilepsy, we needed to talk with someone who understood how to raise a child who has seizures. We needed to know what to expect and how to handle the difficult situations that were bound to arise. After some research, my wife, Romena, and I selected the Epilepsy Association because of their Kids & Family Program. We understand how this program helps other families like ours. As a family, we invite you to support all the Keenan’s who were lost too soon because of epilepsy. For our friends and family who have asked, “what can I do?’ and for everyone who is moved by our story to help, we ask that you consider making a gift to the Keenan Lawrence Memorial Fund. The Epilepsy Association has created a link so that donations are securely made on-line. Here is the link to Keenan’s Memorial Fund. All proceeds will go to the Epilepsy Association in Cleveland, Ohio.
Editor’s Note: Unemployment rates for persons with epilepsy reach nearly 50%. The Epilepsy Association is working to reduce this number. On March 26, 2014, the Association is hosting a seminar for persons with Epilepsy looking for employment. In addition to Mike’s presentation about your rights, human resource specialists will make presentations and provide hands-on, in-person help. This includes a review of your resume and job interview role-playing. Please share this information with everyone you know who has epilepsy. To register log onto http://weblink.donorperfect.com/SEMINAR
This is my fifth blog for the Insights into Epilepsy website. I have intractable Epilepsy and over the last twenty years I have had break through seizures, with varied frequency and intensity. The Epilepsy Association is holding a seminar entitled Ease into Employment: A Program to Kick-Start Your Job Search. I was asked to present a segment entitled ADA – Know Your Rights as well as write this article with the same theme. This is a complex area of law and this article is meant to be informative and should not be construed as legal advice.
The Americans with Disabilities Act of 1990 (ADA) prohibited disability based discrimination and protects disabled persons from discrimination in employment. The definition of disability under the ADA was gradually narrowed by case law. In 2008 Congress passed the Americans with Disabilities Act Amendments Act which broadened the definition of a disability. The Amendments Act and its Regulations (promulgated by the EEOC) indicate that the emphasis should be on whether discrimination has occurred not on whether the individual has a disability.
Before the ADAAA and its Regulations, Epilepsy, because of its episodic nature did not always meet the definition of a disability. The Amendments Act and its Regulations list Epilepsy as a condition that would always meet the definition of a disability. Although the ADAAA and its Regulations do not create a list of “per se” disabilities, they created a list of conditions that “virtually always” will meet the definition of disability and Epilepsy is on that list. Satisfying the definition of disability is just the first step in gaining protection under the ADA.
The ADA prohibits a “covered entity” from discriminating against a “qualified individual with a disability.” A covered entity is defined in Ohio as a company with four or more employees, with fifteen or more employees and engaged in interstate commerce or a Labor Union. A qualified individual with a disability is defined by the state as an individual “who with or without reasonable accommodation, can perform the essential functions of the employment position that such individual holds or desires.” For example, if I don’t have a driver’s license, due to my epilepsy, I could not apply for a job that required me to drive and be protected under the ADA.
The employer has a duty under the act to make reasonable accommodations for its disabled employees. This means that the employer must try to make the existing facilities readily accessible and usable to individuals with disabilities. This can be done in a variety of ways. However, an employer is not required to provide an accommodation if it would pose an undue hardship which is defined under the act as an “action requiring significant difficulty or expense” when considering the facts and circumstances.
The ADA prohibits employers from making inquiries about disabilities or requiring medical exams before an offer is made however, they can ask applicants about their ability to perform the essential functions of the job. Once an offer of employment is made, the employer can require a medical examination, but only if all employees in that particular job category are required to do so, and the results are kept in separate files and treated as confidential. The employer may not withdraw an offer from a disabled person based on the results of a medical exam unless the results bring into question the person’s ability to perform the essential functions of the job and a reasonable accommodation cannot be made.
The ADA does not protect an otherwise qualified individual if they are currently engaged in the illegal use of drugs. The employer may also prohibit the use of alcohol. The ADA takes no stance on drug testing. It is neither prohibited nor encouraged by the act.
Once you have the job the ADA prohibits disability-based harassment. Harassment can occur either by a supervisor or by coworkers. Harassment is prohibited whether from the employee’s disability per se or from his request for accommodation. No one deserves to be discriminated against no matter who they are.
Before I close, I would like to thank Sheldon Starke, a friend and colleague of mine, who practices in this area of the law and helped me get a good understanding of the ADA. If you find this article intriguing and would like to hear a more detailed discussion of this topic and others, please join us at the Epilepsy Association’s Seminar, Ease into Employment on Wednesday, March 26th, 2014 at the Epilepsy Association Office. March 26 is Purple Day® or the Global Epilepsy Awareness Day. Please don’t forget to wear purple, I know I will be!
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 firstname.lastname@example.org.
We invite you to share your experiences with living with epilepsy. For more information, please contact us at email@example.com.
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.
Editor’s Note: The 2014 Winter Walk is this Saturday – January 18, 2014. The Walk is really two walks held simultaneously and the SouthPark Mall in Strongsville and the Great Lakes Mall in Mentor. Registration is still open for the Walks. The Dillon Family is a long time supporter of the Walk. They walk to support Macey. And her story was submitted by Grandma Thornton. Macey and her family will be at SouthPark Mall.
Macey is a strong, normal child on the outside, but inside her brain is very busy. In March of 2009, Macey had her first grand mal seizure. Her pediatrician felt this was an isolated occurrence, but a Sleep Deprived EEG showed she had Benign Focal Epilepsy, which is usually seen only during sleep.
In July of the same year, Macey’s seizure activity increased so that her neurologist placed her on medication which eventually stopped her grand mal seizure activity. However, during that summer we began to notice that Macey seemed to be very clumsy. She would often trip and fall over nothing. This could happen 30 times in a day! It was then that Macey was diagnosed with a rare kind of seizure called “drop seizures”. This is almost never seen in children with Macey’s type of epilepsy and her physician had never seen one like it. With medication change, her seizures were able to stop and the entire family was able to take a deep sigh of relief!
In 2010, Macey entered 2nd grade. The first couple months went well, but then she began to show extreme cognitive regression and poor memory. She also had sleep issues and napped frequently. Once again Macey was tested and the results showed another sleep deprived EEG. In April 2011 Macey was diagnosed with a rare form of epilepsy called ESES (Electrical Status Epilepticus during Sleep). She had continuous seizure activity for 85-95% of her sleeping hours, as well as some during the time she was awake. As a result, Macey was not moving short term memory into long term memory so what she learned one day would be forgotten the next day.
Again Macey rallied. With additional medication and special education intervention, Macey has improved tremendously. Today, she plays goalie for a traveling soccer team, plays basketball, and has many good friends. She is such a joy! We love her attitude and strength. Her parents and brother support her all the time. And, recently, Macey had another EEG and discovered she is now down to having seizures 25% of her sleep time!
We support the Epilepsy Association Winter Walk because the Association services help families cope with epilepsy. We invite you to join us on Saturday, January 18th. This is the one event where the entire Epilepsy Family – children and adults, their families, friends and care-givers come together to share our stories and support each other.
Editor’s note: Lucy’s mom – Karen Johnson – shares why her daughter’s story is an inspiration for her and for everyone who meets Lucy. You can support Lucy as she walks in the Winter Walk on January 18, 2014 to help others in Northeast Ohio with Epilepsy.
Lucy is an inspirational 9-year-old. She developed Epilepsy when she was 2-years-old. Because of her numerous seizures her development is delayed. Lucy has never let any of her medical or developmental struggles stifle her tireless spirit.
Lucy is an advocate for epilepsy awareness. She was an enthusiastic Purple Day volunteer in 2012. She even attend the Purple Day Party in a purple costume. She has been an Epilepsy Association eRacer , the Epilepsy Association’s Charity Running Team, for the past three years. In 2012 she raised the most money of any runner under the age of eighteen. She enthusiastically spoke at the 2012 Gala to share her story and spread awareness. Instead of feeling sorry for herself, Lucy has embraced the chance to make a difference in the lives of other people, especially children, struggling to live with Epilepsy.
Lucy is an inspiration to other families of children with Epilepsy, not just because of her advocacy but because she has never allowed herself to think she can’t accomplish something because she has Epilepsy. She is a competitive swimmer which is amazing for someone who used to have 50-70 seizures daily. She has performed in two theater productions for Heights Youth Theatre despite the fact that memorizing song lyrics is very difficult for her. Next summer she plans to train for and compete in her first triathlon.
Lucy’s spirit and love for life is contagious. She enjoys making other people in her life happy and feels that her efforts through the Epilepsy Association are helping other children with Epilepsy live happier lives.
We are supporting the 2014 Winter Walk for Epilepsy because the Epilepsy Association is providing services that have helped my family learn to deal with the challenges of Epilepsy. We hope you will support this very worthy cause too.