Epilepsy

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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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“Nature is the best medicine” by Amy Mittinger

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Amy Mittinger enjoying life at a Harlem Globtrotters game

From the editor of Insightsintoepilepsy:  Amy Mittinger has joined our blogging team and will be blogging about her life and epilepsy.  Amy is a recent OSU graduate, and we look forward to reading about her thoughts, feelings and experiences as she enters into her professional life.   In this Blog, Amy reminds us that we are in control of our medical conditions.  In sharing her experience she wishes to emphasize that she is not advocating any particular course of treatment.  Are you in control of your epilepsy treatment?  We invite you to share your experiences by leaving a comment to Amy’s blog.  For  more information about epilepsy visit our website:  www.epilepsyinfo.org

I was diagnosed with epilepsy during my sophomore year of high school in fall of 2005. Talk about a shock. I was an A student and healthy athlete who took care of my body via exercise, healthy eating, and abstaining from anything harmful or dangerous.

But my life changed that Labor Day weekend, when I felt “weird.” Weird is the best term to describe the temporary spurts of feeling physically astray from the world around me. These spurts turned out to be simple-partial seizures. They were classified as “simple partial” because they were just that: very faint, or simple, and only affecting part of my brain. (The left temporal lobe, to be exact.) They never caused me to lose consciousness, fall, or otherwise suffer from sickness or pain.

That’s the beginning of my story. The middle is a long narration of medications, medical trials, illness, and the continuation of seizures through it all. I was a patient at Cleveland Clinic four times total — the first three for a week of monitoring each time, and finally the fourth for surgery. After some consideration and debate, I went ahead with this procedure in summer 2008 after my high school graduation that spring.

The surgery was a left temporal-lobectomy, or the removal of my left temporal lobe — the part of my brain where seizures occurred most. And it was beneficial. It didn’t eliminate the seizures, but greatly reduced them to 1 or 2 per day, down from about 15 per day. So I wasn’t complaining. I was thankful as ever. But I remained curious of ways to reduce them further.

I remained on medications, and plenty of them, since the beginning. Probably 10 total, and up to four simultaneously. Medications were almost an entirely separate problem. I swallowed pills that caused nausea, fatigue, shaking, sensitivity to smells (which did, and still does, cause seizures in itself), and everything in between. I remained on two medications after my surgery. Luckily, they didn’t have side effects. But that’s where curiosity kicked in. Instead of increasing doses and/or taking additional medications, what if I did the opposite? What if I decreased medications to eliminate anything “epilepsy related” from my body?

I posed this question to my doctor, who — after knowing and trusting me for five years — gave me the okay be my own boss and go ahead. So I did. I said I would begin decreasing medications. I politely refused decreasing at the usual pace of once per week (too fast, if you ask me), and told him I would do this slowly in order to notice my body’s reactions. So the adventure began. Of my two medications, I began reducing the dose of just one at a time, at a rate of once per month.

It took a couple months to notice any effects (which was fine; it proved my theory to extend the process). But after the finale of this eight-month decrease, the effects were good! Great, actually. I noticed an increase in energy and a decrease in seizures. So I soon began decreasing my second medication. This took an additional eight months. And the positive effects continued.

The total decrease lasted a total of 16 months. And after it’s finale in May 2013, my seizures have nearly vanished. I’ve had one in the last three months. To top it off, I feel awesome. I’m energetic, alert, and most importantly, feeling seizure-free and healthy.

If you have epilepsy and are reading my story, the moral is not to order you to immediately stop taking any and all medications. The moral of this story is to oblige your own feelings.  If you’re convinced that your given medication is helping you, awesome. So be it. Continue helping yourself. But if you suspect the opposite, or just aren’t sure, do what I did. Talk with your doctor about your choices and desire to reduce the medication(s), either very slowly like me and/or at your own pace entirely, and to let nature take its course. It may have positive effects similar to my case. It may also have worsening effects. Just pay attention to these effects, and more importantly your own body, to determine your next course of action. If you think and act this way under any circumstances, epilepsy or not, I believe you will witness an increase in your health. Good luck!

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About Managing a Professional Life and Seizures

As editor for the Insights into Epilepsy blog, I invited Mike Wesel to be a contributor for his site.  I first met Mike seven years ago when I joined the Epilepsy Association staff and he was a member of the agency’s Board of Trustees. Mike is a CPA and attorney in Cleveland, and a father of two boys.  He successfully manages a busy life even though he may experience a seizure at any time.  I believe the way Mike tackles everything with a can-do attitude including his professional and charity work, his family and his management of epilepsy contributes to his success and happiness.  Mike’s contributions to this blog will inspire others to persevere, to be happy and to have a gentle heart.   ~Andrea Segedi

I am an attorney and Certified Public Accountant. I live and practice tax law in the Cleveland Metropolitan area.  I was first diagnosed with Epilepsy in 1972.  My seizures were controlled later that year and I was seizure free for 13 years.  They returned in 1985 and were controlled later that year. After graduating from law school, I started having break through seizures around 1992. I have had break through seizures since then and they still continue today.

I started working for Ernst & Young (E & Y) in August of 1990.  I had been working for E & Y for approximately two years before my seizures returned.  At first my seizures consisted only of the aura, which was not very noticeable, and gradually got worse until they turned into the typical seizures that I had experienced in the past. I had already developed a working relationship with most people in the office so they did not react adversely to what was happening to me.  Even if they had reacted adversely to my seizures I don’t believe that I would have let it bother me; although, I was constantly worried that I would get fired or laid of because of my seizures.

This created a lot of stress at the time.  Most of my stress resulted out of the frustration I had over my seizures. I don’t like blacking out and losing control of my faculties.  I have learned to deal with this by maintaining a positive attitude and never losing hope that some day I may gain control of my seizures. Some people believe that this is unrealistic but who is to say what may happen in the future.

After I left E & Y, I worked in industry for approximately five years for two local companies in Cleveland.  After I left the last company,  I tried some home based business that were not successful.  I then tried to find a job with a law firm in Cleveland.  The economy was not good at the time and there were no openings for tax attorneys in Cleveland.  I was tired of not working and decided to start my own law practice.  I have found that wherever I have worked that most people are empathetic about my epilepsy.

Working for myself, although challenging and stressful in different ways has alleviated the worries of working for someone else and having seizures.  As my own boss, as long as I am to court on time I can keep my own schedule. Currently my seizures are less explosive and I don’t black out as much. However they still occur on a regular basis. I have found that keeping a positive attitude and a good sense of humor while letting the people around me know my situation helps reduce the stress and frustration of epilepsy in the workplace.  Never lose hope and be sure to wear purple on March 26th. I know I am!

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~Michael Wesel

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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.