Epilepsy

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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Hope

Mark Johnson is an adult living with epilepsy in Northeast Ohio.  This is his first blog post for the Epilepsy Association.  Mark finds peace and joy in writing poetry and was kind enough to share his words with our readers. Thank you Mark!

Hope

There is still hope for those of us that are very lost.

Wishing, hoping and praying that someday, our paths will surely cross.

Sometimes we may go through very crazy and trying times.

Having that hope can really start to ease your mind.

For some of us, we have demons that are very tough to shake.

Keep hoping and doing the right things, so that chain will start to break.

I have been feeling very hopeful as of late.

Don’t leave it up to anyone else but you, to decide your own very fate.

Hope is here for all of us to understand and feel.

There are times in life when hope is very hard to find.

Please don’t worry too much; it is there for us all of the time.

8/8/15

By Mark Johnson

Mark Photo

 

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Never give up!

I have written several postings for the Insights into Epilepsy blog, but it has been a while since my last entry so let me briefly tell you who I am again.  I am 51 years old and I had intractable epilepsy for more than 30 years.   On November 7, 2014 I had surgery and I have been seizure free since.  I was initially diagnosed when I was eight years old.  I was seizure free until I was twenty-one when they re-occurred.  I believe that it was almost thirty years ago today that my seizures returned again.  They were controlled for about seven years and then returned, and this time with varied frequency and intensity, they didn’t stop until I had surgery last November.

About a year ago when I went in to see my neurologist for my regular checkup, he indicated that they had a lot of success with people like myself who had done seizure monitoring without locating a focal point by using depth probes, which allow them to locate seizures that emanate from deeper within the brain.  I met with one of his fellows for what seemed to be the better part of an hour.  After I met with him I talked with my neurologist again.  The monitoring process is known as Stereoelectroencephalography or SEEG.   The process goes like this:  They do surgery to implant the leads in 12 to 14 different locations in the brain depending on the results of any previous testing that was done and the symptoms and type of seizures.  After asking a lot of questions and talking with my family I decided to go forward with the SEEG.  If they were successful in finding the focal point I would then make the decision on whether or not to have the surgery.

They scheduled the SEEG in early September.  I was in the hospital for approximately 10 days and they were able to locate my focal point. As anyone who has been through seizure monitoring knows, it is not a pleasant experience to go through.  This was the third time for me.   They found two focal points.  After asking a lot of questions and weighing the odds, I decided that even at 50 years old I was young enough and the percentages were good enough that I would go ahead and have the surgery.

This was not an easy decision to make and I spent a lot of time thinking about it.  At this point in my life, I had come to terms with my Epilepsy and accepted it as a part of my life.  On November 7, 2014 I had the surgery.  After the surgery, while I was in a skilled nursing facility, I fainted when I went to the bathroom and broke three metatarsals in my foot.  The fainting spells necessitated my staying in the skilled nursing facility longer than originally anticipated.  In early December some swelling, which was normal in a procedure like the one I had, became infected and I ended up back in the hospital.  They opened up the wound and washed out the infection.  The infection required that I be on IV antibiotics for the next ten weeks. I finally went home on January 17, 2015 and I was back to work full time by the beginning of February just in time for Tax Season.

The irony of all this is that I had finally come to terms and accepted Epilepsy as a part of my life and now I am finally seizure free.  If there is a take away from my story it is that you should never lose hope.  It is possible to

come to terms and successfully live with epilepsy and we should never lose hope that we may one day be seizure free. If things remain the same, in May I can start the process of getting my driver’s license again.   Never give up hope!

Mike Wesel, Attorney & CPA

Mike Wesel, Attorney & CPA

Congratulations Mike! You area true inspiration to us all!

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James- Hard work really does pay off!

James has been a client in the Adult Case Management Program since 2004.  Since beginning services he has worked on making improvements in many areas of his life.  His most recent goal is related to employment.  James has been working with his case manager on connecting with community resources that can help with employment related issues.  James has recently completed his Work Adjustment program and, as you can from his photo, he is very proud of earning this certificate.  James is looking forward to doing custodial work as he finds it enjoyable and easy for him to do.  He is very appreciative of the time and dedication that the Epilepsy Association staff have shown him over the years.  Congratulations James- Keep up the great work!

The Adult Case Management Program assists adults with epilepsy and mental health diagnosis all around Northeast Ohio.  James is one of the many successful clients that we have had from this program.  If you, or someone you know, is struggling to manage their epilepsy the Adult Case Management Program may be a great way to get help and get life back on track.  Please call Lacey at the Epilepsy Association for more information. 216-579-1330

We will continue to post success stories!  If you have a story you would like to share please call Lacey at EA 216-579-1330 to discuss blog posts and see how you can submit yours to be reviewed for possible publishing!

James with his certificate of completion

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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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Increasing Epilepsy Awareness by Michael Wesel

Scenes from the charette: Top row - Katherine Chilcote & Lucy and Lisa coming together. Bottom row - creating scenes for Katherine to paint

Scenes from the charrette: Top row – Katherine Chilcote & Lucy and Lisa coming together. Bottom row – creating scenes for Katherine to paint

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.

Sharing experiences at the mural charrette

Sharing experiences at the mural charrette

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 asegedi@epilepsyinfo.org

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.

Blogger Mike Wesel

Blogger Mike Wesel

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A Father Remembers His Son – By Kenneth Lawrence

Lawrence Family Bottom Row: Kenneth and Romena Top Row Left to Right: Kenneth Lawrence, II and Keenan

Lawrence Family
Bottom Row: Kenneth and Romena
Top Row Left to Right: Kenneth Lawrence, II and Keenan

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.

 

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ADA – Know Your Rights – By Michael Wesel

Mike Wesel, Attorney & CPA

Mike Wesel, Attorney & CPA

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!

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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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Grandma Thornton is inspired by Macey Dillon’s Strength & Positive Attitude

2014 Featured Family - the Dillons

2014 Featured Family – the Dillons

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.