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.

 

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!

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.

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.

Lucy’s Story

Johnson Family Back row: Gordon & Karen Front row: Lucy, Ben and Julia

Johnson Family
Back row: Gordon & Karen
Front row: Lucy, Ben and Julia


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.

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.

NICHOLAS – OUR THANKSGIVING INSPIRATION!!! by Joanne Meyers

Image

Happy Birthday Nicholas!

Editors Note:  This month we are posting the stories of the 2014 Winter Walk Featured Families.  These families are sharing their stories to bring about greater awareness of epilepsy.  Nick’s mom has written this blog.  To support the Meyers Family’s effort please visit the Meyers Winter Walk Team Page  We hope to see you at the annual Winter Walk for Epilepsy on January 18, 2014. It’s an indoor walk! The Walks are held simultaneously at the SouthPark Mall in Strongsville and the Great Lakes Mall in Mentor.

Nick was diagnosed with Tubular Sclerosis shortly after his birth at 32 weeks.  Tubular Sclerosis Complex (TSC) is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs.  The aspects of TSC that most strongly impact quality of life are generally associated with the brain:  seizures, developmental delay, intellectual disability and autism.  Current estimates place TSC affected birth at 1 in every 6000.  Today, there is no cure for TSC.

Since the age of 3 months, Nick has experienced daily seizures of all types.  At times, he experiences seizures that result in him falling to the ground, resulting in injuries.  Many, many medications have been tried and have failed to control them.  He is currently taking 13 pills per day, a mixture of seizure medications, and has not maintained seizure control.  He has spent approximately 5 weeks in hospital monitoring units to determine if he is a candidate for brain surgery.  So far, all attempts have been unsuccessful.

Nick is non-verbal, developmentally delayed and exhibits many autistic qualities.  In spite of this he is a very energetic, happy, determined and loving young man.  Even though he is non-verbal, he makes his wants, needs and emotions very apparent to those around him!  He exhibits an amazing sense of humor that shines through even without the use of words.  He has chosen to embrace life and live each and every day to the fullest.  He doesn’t waste one second feeling sorry for himself.

As a family, we’ve chosen to not allow Tubular Sclerosis or epilepsy define Nick or our lives.  We make the conscious effort, led by Nick’s example, to go on living, even on the worst days.  This would not be possible without prayer, laughter and the amazing support system that has surrounded us.  We are blessed that every aspect of Nick’s life is supported with individuals that accepted him unconditionally and lovingly.

Our family and friends are always there to provide constant emotional support.  Nick’s classroom staff, in the Multiple Handicaps room at Greenbriar Middle School in Parma, are his biggest cheerleaders.  They challenge him each day to achieve success  through academics, life skills and social skills.  In the summer, he attends Camp Happiness (Catholic Charities) where he is accepted and loved unconditionally.  He participates in Parma Pride, Parma’s special needs athletic program.  He comes together with other special needs children, learns athletic skills and gets the opportunity to just be a kid.  He participates in activities at his little brother’s school where he has never been looked at as “different”.  He is a member of Troop 2008, Parma’s special needs Boy Scout troop, where he can have fun with his friends.  His medical team at Cincinnati Children’s Hospital works tirelessly to keep up with his ever changing medical needs, and provide all encompassing support for our family.

Even with the battle’s that have been presented to Nick, he is the happiest and most content when our family participates in events that involve “giving back”.  He participates in Catholic Charities Walk of Hope.  He helped to plan a movie for special needs individuals with his dad at PlayhouseSquare.  He helps to raise funds for Troop 2008 so that he and his friends can go on field trips together.  He is participating in this year’s Epilepsy Winter Walk to help raise awareness and support for those with epilepsy.

Nicholas was born on Thanksgiving Day, 2001.  That truly summarizes Nick.  As a family, we are so thankful to have him in our lives.  He is the best son and big brother imaginable.  He has taught us the true meaning of life:  to count your blessings, love unconditionally and to give back to others in need. Please join our family and our team on January 18, 2014 at Southpark Mall for this year’s Epilepsy Association Winter Walk.  Please follow Nick’s example and give back to those in need by donating to this cause that is so special to our family.

Paige Frate, Mighty Princess Warrior prepares for the 2014 Winter Walk

11-18 Paige Fraite

Paige inspires her team to come in first.  Click here to support Team Paige

Editor’s Note:  On January 18, 2014 the Epilepsy Association will host the 9th annual Winter Walk for Epilepsy.  The 2-mile walk will be held simultaneously indoors at the Great Lakes Mall  in Mentor and the Southpark Mall in Strongsville. Our passion is to raise epilepsy awareness and one way we do this is by sharing the stories of living with epilepsy.  Here is the wonderful story of Paige Frate submitted by her mom Kristina.

I am sharing my daughter Paige’s story to increase awareness of epilepsy and to encourage your support of the 2014 Winter Walk for Epilepsy.

Paige was born on August 18, 2010.  At 6 months of age, she had her first seizure which was associated with a fever.   During the next two months, additional seizure types developed: clonic, myoclonic, absence, and complex partials.  At 8 months of age, through genetic testing, Paige was diagnosed with Dravet Syndrome. It is also known as Severe Myoclonic Epilepsy of Infancy (SMEI), which is a rare and catastrophic form of intractable epilepsy occuring in roughly 1 in every 30,000 births.  She will never outgrow this condition and it affects every aspect of her daily life, along with our family’s as well.

SMEI is a progressive disorder characterized by multiple seizure types that are resistant to treatment, often including life-threatening status epilepticus.  Earmarks of the syndrome include behavior and developmental delays, lowered immunity, chronic infections, delayed speech, sleeping difficulties, orthopedic concerns, and hyperactivity to mention a few.  In addition, children with Dravet face a higher incidence of SUDEP (sudden unexplained death in epilepsy).

Paige’s development remained on track initially, then declined significantly at 19 months.  This is when she became extremely ill with RSV, had a 67 minute seizure, her heart and lungs shut down, and emergency ECMO surgery was performed.  The surgery saved her life, but caused her to have a stroke.  She lost the ability to walk, talk, and eat.  It has been 18 months since the surgery, and I happily report Paige has learned  to walk again and can feed herself.  Her speech is significantly delayed, but she is making tremendous progress.  She attends therapies on a regular basis and continues to show us how resilient she is.

Paige’s Dravet impacts every aspect of our life.  The care she requires is intense.   • She requires high doses of medicines which are time regimented medicines.  (She currently takes 8 doses a day which are just her seizures meds.) • We try and maintain her body temperature.  She is ultra-sensitive and if her temperature rises above 99 degrees, she will have a grand mal seizure.  Therefore, we use a cooling vest.  • She cannot be exposed to direct sunlight.  We keep protective gear on her when outside. • She cannot be in a stressful environment. • We ensure Paige receives ample rest to eliminate sleep deprivation.  • It is of upmost importance to limit her exposure to illness.

My mission in life is to educate others on this spectrum disorder and type of epilepsy.  As a family we are dedicated to raising money to increase Epilepsy Awareness.  This is why I encourage you to support the Epilepsy Association Winter Walk and TEAM PAIGE.  We’ll be at the Mentor walk and hope to see you there.

Sincerely,

Kristina Frate – mom to Paige, the Princess Warrior

A look at my life with epilepsy – by Michael Wesel

Mike Wesel

Mike Wesel

Note from the editor: In honor of Epilepsy Awareness Month we will post several blogs in which the writers share their experiences with epilepsy. We start with Mike’s look at his life with epilepsy. We are extremely fortunate to have Mike share his life with epilepsy for the readers of this Epilepsy Association blog. His ability to focus on the positive is an inspiration for us all.

This is my fourth Blog for the Insights to Epilepsy website. By now you should be getting to know who I am. I am 49 years old and have intractable epilepsy. My initial diagnosis occurred in 1972 when I was eight years old. I was seizure free until I was twenty-one when they re-occurred. I was seizure free for seven more years until I was approximately twenty-eight years old and I have had break through seizures, with varied frequency and intensity, ever since.

Let’s face it, anyone of us who has ever experienced a seizure knows that it is a nerve racking experience in and of itself no matter how we feel about it emotionally. Epilepsy has impacted every aspect of my life including my ability to legally drive a car, maintain employment, my marriage and family, and (yikes!) my relationship with law enforcement authorities. Despite all of this, I opened my own law practice in downtown Cleveland, maintained my certified public accountant certification, set-up my Westside bachelor pad, and have solid relationships with my two incredible sons. Upon reflection, I’m doing a lot better than a lot of people without epilepsy!

My seizures returned when I was 21. At the time, I had a tremendous amount of fear about what was happening to me. I believe fear is a normal human response that everyone experiences at some point. I overcame my fear by relying on a core group of family and friends to hang out and do things with. This prevented me from hurting myself and also gave me support when someone from the community reacted negatively to my seizures. Believe me this happened more than once. I am now used to having seizures in public and don’t really care what people think about me. However, I don’t seek such situations and I do wear a Medic Alert necklace whenever I leave my apartment. I have told my friends, colleagues, and others about my epilepsy.

Although I am actively and successfully managing my epilepsy, it impacts my freedom and continues to stress me out. For example, I can’t drive a car which frustrates me, especially in our fast-paced world. I have alleviated this stress by using public transportation as much as possible. With a little planning and a lot of waiting I get where I need to be and generally on time. I memorized the time schedules for the routes I use most often. I love to read and carry a book with me everywhere I go, so my extra time on public transit is not a waste, but a luxury. When I can’t use public transportation, I have an excellent driver to take me where I need to go. Another luxury, right?!

Despite – or perhaps because of – the constrictions of my disease, I live a full, happy, and (sometimes) adventurous life. I keep very busy with both my law practice and the charitable organizations that I volunteer and belong to. I refuse to let epilepsy trap me in
my Westside apartment. First, I accept that life comes at me, epilepsy and all and I look forward to that challenge. After all, life comes at everyone and we all have to deal with what lurks around the corner. Second, I actively manage what others may call a detriment. For me, my epilepsy is a fact of my existence and I’m going to deal with it by focusing on my health, happiness and surroundings. Although, I have epilepsy, it does not control me.

Of course, not everything has been rosy. Shortly after my ex-wife and I separated, I was out by myself drinking when I had a seizure and was arrested for slapping a police officer. I came out of the seizure handcuffed to a gurney in the emergency room with a black and blue face and a broken ankle. Talk about stress, and frustration. As my sister says, I was in a bad place. This I think was my low point. If things had turned out differently, I could have lost my law license and CPA certification. That event taught me that my emotional health impacts my epilepsy. That night, I was being reckless and not using my head which had a pretty immediate and direct effect on my physical well-being. Now I understand that I must stay on top of my emotional health to be able to work with my epilepsy. (And, yes, once I recovered, I apologized to the policeman!)

Importantly, through this rollercoaster ride, new challenges constantly arise yet I keep a positive attitude and somehow manage to overcome them.  One day, a cure will come.  Until then, I take life by the horns, pay close attention to my physical and mental health, pray a lot, keep busy, and rely on the incredible people in my support group.

This is Epilepsy Awareness Month.  I find that the more I accept and address my situation, the better my life becomes.  So, I encourage you to take time to assess your relationship with epilepsy and, then, grasp life and let people know who we are and what we are all about.  Now, I let the commuting drivers deal with frustration, fear, and stress!  Give me my book, epilepsy management skills, and acceptance and I will gladly sit back and happily cruise on to my next life challenge.