Epilepsy Association News

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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.

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Our Connection with Epilepsy by Lynn Shiverick

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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NICHOLAS – OUR THANKSGIVING INSPIRATION!!! by Joanne Meyers

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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.

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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

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By wearing purple on March 26, you will help increase awareness of epilepsy

 

Marcia Columbro, MD

Say the word “pink” and most people will think of Susan G Komen and Breast Cancer Awareness. However, how many people know that purple is the color associated  with the Epilepsy Association and the international Global Epilepsy Awareness Day known as Purple Day? It took the creativity of a young girl, Cassidy Megan, from Nova Scotia, Canada to conceive Purple Day as a way to raise epilepsy awareness.  The name Purple Day was chosen after the international color for epilepsy, lavender.  The lavender flower is associated with solitude which represents the isolation many people who have seizures feel.  I am a pediatrician and I am pleased to be involved with the Epilepsy Association as a member of the Physician Advisory Board and also as the chairperson for the Cleveland area Purple Day. The Epilepsy Association is a non-profit organization which provides much needed services to help those with epilepsy navigate their lives.  Purple Day is an international movement celebrated around the world on March 26th.  Many of you may have epilepsy or know someone with epilepsy as more than 3 million Americans have some form of epilepsy. Many of you may not know that someone you know has epilepsy as there is a veil of secrecy associated with the disease. No matter who you are I challenge you to help raise epilepsy awareness by wearing purple on March 26th .For those of you that are more ambitious or want more involvement go to www.epilepsyinfo.org to find out about other activities taking place for Purple Day and how you can take part! Join us for the Epilepsy Association Purple Day Party on March 26, 2013 at P J Mcintyre’s Irish pub located at 17119 Lorain Ave from 5:30-7:30pm by purchasing tickets at www.epilepsyinfo.org

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Epilepsy Association Case Managers Wear Many Hats

Our Case Managers: From Right to Left Linda Ware, Anthony Griffin, Brianna Prebeck & Lacey Wood

Our Case Managers: From Right to Left Linda Ware, Anthony Griffin, Brianna Prebeck & Lacey Wood

I am Lacey Wood LISW-S and I am the new (since October 2012) Director of Community Programming.  I may be biased, but I think the Epilepsy Association case managers are pretty fantastic! I was a case manager for children and an early childhood therapist at my previous place of employment so I know how difficult this work can be and how hard it is smile through the rain sometimes. 

Case Managers wear many hats: advocate, teacher, secretary, networker of services, taxi cab driver, and the list goes on and on.  For those trying to manage their Epilepsy while dealing with a mental illness a Case Manager is priceless. The calls that I get regarding our Epilepsy Association Case Managers are full of appreciation for what our CM’s are able to assist them with and how different their lives are because of what our program has to offer them. Case Managers have the ability to take on many roles and responsibilities specific to each individual client. They are caring, resourceful, and dedicated to helping others. Many of our clients would not be where they are today if it wasn’t for their case manager coaching them and being their own personal cheerleader. 

The population that we serve is very specific and challenging and our case managers easily and compassionately assist our clients with the day to day tackling of the complications of managing epilepsy as well as a mental illness. Our Case Managers need to have a broad knowledge base consisting of epilepsy, mental illness, resources, and creative interventions to assist clients in promoting their well-being. There has been a stigma that case managers are very “thick skinned”- case managers are not. They take setbacks and negative situations and are able to use them to motivate themselves and clients to make a positive change, all with a smile on their face. It isn’t being “thick skinned” or “tough” that makes them this way- It is a gift that they possess that allows them to see the silver lining in dismal situations and celebrate every success no matter how small!

Case Management services can be accessed by adults with an epilepsy diagnosis and mental health concerns by calling 216-579-1330. I would be more than happy to answer any questions that you may have regarding our case management services as well as any of the other services that we provide.

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Welcome to the Epilepsy Association Blog

3-1Kelleycompressed

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

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

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

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

~Kelley S. Needham