Epilepsy Awareness

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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“A person’s a person, no matter how small.” -Dr. Seuss

Ryan ready to start the Winter Walk!
Ryan and 2016 Winter Walk Featured Family super star, Ella!
Ryan receiving his award at the Epilepsy Association’s Power Lunch. Award presented by Board President, Peter Nelson and CEO, Kelley Needham

Children CAN make a difference! Take Ryan Wood for example.  At 4 years old he is preparing for kindergarten, looking forward to summer T-Ball,  and enjoying being a big brother.  He is also making positive change for other children.  Ryan participated in the 2016 Winter Walk in which he rode his scooter the entire course at Strongsville Mall.  When asked why he did this he reported, “I want to help other kids. There are kids that have epilepsy that can’t be here for all the fun”.  Ryan spent several weeks campaigning by making phone calls to family and friends as well as posting a series of videos on Facebook to talk about epilepsy and how important it is to help others.  His videos were shared on many different Facebook pages and he received donations from several different states!  Every day after preschool he would ask to view his website to see who donated.  He then would call and thank them.   Ryan’s success was so much more than he and his family could have imagined!  He raised $825 for the Epilepsy Association which made him to top fundraiser for his age group.  Ryan attended  the

Purple Day Power Lunch at the Epilepsy Association in which he received an award for his efforts.  He was permitted time at preschool to share his award with the classes and talk about epilepsy and helping others.  Ryan’s preschool, St. Augustine Manor Child Enrichment Center, also hosts a Purple Day event in which the children learn about epilepsy through an in-service or puppet show, wear purple, and create purple projects.  The children created a poster this year that currently hangs for all visitors to the Epilepsy Association to see.

Ryan may only be 4 years old, but his efforts raised funds to provide support services to children with epilepsy and their families at no cost to them.

If you would like to learn more about the services that Ryan raised funds for, or helping your child’s school set up an in-service to provide epilepsy education, please call the Epilepsy Association at 216-579-1330.

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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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“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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Beyond the Storm

 

Epilepsy Association 2831 Prospect Avenue Cleveland Ohio

Epilepsy Association
2831 Prospect Avenue
Cleveland Ohio

Anyone who lives with epilepsy understands how stigmatized epilepsy makes people feel.  We ask, where is our national spokespersons or why don’t we see media campaigns about epilepsy?  After all, the prevalence of epilepsy makes this neurological disorder a major public health problem.  Epilepsy is not benign.  As many as 50,000 people a year die prematurely from the consequences of seizures.  That is more than die from breast cancer.

I am at an age where friends frequently share stories about high blood pressure, diabetes, cancer and other illness, but never once have I heard anyone talk about epilepsy in public, even when I know they live with the disorder.  Yet, I have had many experiences where people, once they knew where I work, share quietly that they have epilepsy, as if to say, “I wish I could talk about this.”

Two years ago, the Epilepsy Association in Cleveland decided to help people talk about epilepsy.  With the help of some very generous Clevelanders, we commissioned Katherine Chilcote to paint a mural about the journey of epilepsy.  We then installed her 32 foot by 10 foot work of art on the outside of our building.  We did this to tell the story of epilepsy, generate awareness of the Epilepsy Association and to give persons with epilepsy a place in the community.  We felt art accomplishes these goals.

To conceive of the imagery, Katherine interviewed 34 individuals in Cleveland and Seattle who live with epilepsy, and she conducted one community charrette (a planning dialogue) during the spring of 2014 in Cleveland.  Through this process, Katherine gained insights into the shared experiences of living with epilepsy.  Her mural, “Beyond the Storm” reflects these shared experiences.

The mural’s imagery describes a voyage or journey that moves people beyond the circumstances of their health condition and life’s circumstances.  Katherine was inspired to paint images of birds and tornados as a reflection of the physical experiences of seizures.  Moving beyond these experiences are expressed through a vast horizon in the painting.

Katherine came to understand that living with epilepsy means being prepared to live each day anticipating seizures and overcoming the fear of the obstacles they create. Through this project, she hopes we come to understand that health obstacles give us an opportunity to grow into stronger people.  During the interviews, she heard a common expression of knowing one’s own strength to withstand the neurological storms of seizures and to move beyond these episodes. She heard that coping with the paradoxical realities of being one person while seizing and another while healthy were different for each individual.  And, she discovered that while epilepsy presents many commonalities, the epilepsy journey is uniquely experienced. For some, the condition is a minor distraction, while for others it presents huge obstacles.  It is a paradoxical life to be lost then found, and to be sick then healthy over and over again.

What Katherine wants us to realize through this work is that all persons with epilepsy have a powerful ability to accept oneself amidst a world that in uneducated about epilepsy, and often reacts cruelly based on the ancient stigma associated with the condition.  She thinks of this mural as a prelude, or wake up call, for the work needed to create a more accepting culture.

A few weeks ago, on a very cold  day, an idea that began many months ago finally became a reality.

Katherine Chilcote finishes installation of "Beyond the Storm"

Katherine Chilcote finishes installation of “Beyond the Storm”

Katherine installed “Beyond the Storm.”  This spectacular mural is her gift to the city, and to all those with epilepsy.

The following individuals/foundations contributed to the project and the Epilepsy Association is very grateful for their support.
The Char and Chuck Fowler Family Foundation,  Amy E. Kellogg, Frank H. Porter Jr., J. Patrick and Diane Spirnak, Tuni and Lee Chilcote, Kathy and James Pender, Reginald and Lynn Shiverick, Medical Mutual, Kitt and Mark Holcomb, Paula Sauer.  The project was also supported by:

CAClogoOAClogo

We invite you to come see the mural at 2831 Prospect Avenue, Cleveland Ohio.  We also invite you to share your story by leaving a comment.  What do you think the images in the mural mean?

 

Written by:  Andrea Segedi

Andrea is on staff at the Epilepsy Association in Cleveland, and worked with the volunteers, donors and Katherine to create this mural.

 

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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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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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Diet and Epilepsy: How the Ketongenic Diet stopped seizures

By Karen Johnsonn MS,RD,LD and MOM

Johnsons at Purple Day PartyLucy with her parents Ben and Karen at the Epilepsy Association’s Purple Day Party

I am a Registered Dietitian with a master’s degree in maternal child nutrition and a culinary school diploma.  Currently I am self-employed as a personal chef who caters to clients with special dietary needs or who prefer to follow a low-fat healthy diet.  I have three children and I take much pride in providing them a healthy, fresh, appealing diet.  Never did I imagine I would be using my training and expertise to manage my daughter’s epilepsy.  Never could I have guessed that my normally developing two-year-old daughter, Lucy, would begin seizing uncontrollably and that I would be uniquely qualified to save her.  Here is Lucy’s story…

In the Fall of 2006, Lucy had her first seizure.  A situation that began with one grand mal seizure progressively worsened until finally culminating with the administration of the Ketogenic Diet.  Before the Diet saved Lucy’s health and development there were numerous ambulance rides, doctor’s appointments, medication changes, and many, many seizures.  Lucy was eventually diagnosed with a severe form of epilepsy and was experiencing a maximum of 70 myoclonic and atonic seizures daily.  Lucy was no longer a normally developing child.  After almost two years of seizing Lucy could no longer play, feed herself, or dress herself.  The seizures were so frequent they were beginning to affect the development of her gross motor skills, fine motor skills, and memory.  She could not be left unattended because she would fall with every seizure.  She began wearing a helmet to protect against head injury from the falls.  After numerous medication trials of various combinations of Adivan, Clobozam, Depakote, Dilantin, Klonopin, Lamictal, Trileptal, and Topomax the Ketogenic Diet was determined by me, my husband, and Lucy’s neurologist to be her final hope.

Lucy entered the hospital on May 26, 2008, at 3-years-8-months-old to begin the Ketogenic Diet.  The initial hospitalization is necessary to monitor that the child safely enters Ketosis, an elevated level of ketone bodies in the blood, a state caused when the body is forced to burn fat instead of carbohydrate.  Lucy did not tolerate ketosis well initially.  When her body entered ketosis, after two days of starvation, she presented with diarrhea and vomiting.  After three days her body adjusted and she was sent home on the very rigid Ketogenic Diet.  Lucy was still seizing.  The Ketogenic Diet is in no way a definite cure for epilepsy.  Many children do not tolerate the diet long-term.  These children fail to thrive and therefore cannot remain on the Diet.  The children who do respond to the diet are still at risk because many families find the Diet too difficult to tolerated and do not remain vigilant enough, long enough for the diet to stop the seizures and allow the child’s brain time to “rewire”.

No neurological professionals can explain for certain why the Diet is effective at stopping seizures.  They only know it works by keeping the child in Ketosis.  Therefore, the Diet is based on a very strict ratio by weight of fat to combined carbohydrate and protein that must be adhered to by measuring all foods to the nearest tenth of a gram.

After about a month on the Diet all of Lucy’s seizures stopped.  For the next four-and-a-half years every meal and snack Lucy ate would be a challenge for her and me:  getting Lucy to finish every meal; distracting Lucy when she did finish and wanted more (which was more often the case as time wore on); creating new and interesting meal options; and finding ways to make the heavy whipping cream (that was unavoidable to maintain the ratio) palatable without using sugar.  With the help of the Ketocalculator, a website designed to calculate fat to combined carbohydrate and protein ratios and calories for individual Ketogenic meals, I was able to create 152 different meal options for Lucy to enjoy. 

Meal preparation for the Ketogenic Diet is very time consuming, even more so if you are also preparing meals for family members not following the Diet.  Because all meal ingredients are measured to the nearest tenth of a gram, all food for the child following the Diet must be prepared separately from the meals of those not following the Diet.

Through hard work, perseverance, and determination the Ketogenic Diet gave Lucy her life back.  She began to learn how to read, write, add, subtract, run, and even swim.  I became a dietitian because I have always been a firm believer in the power of “diet”.   Lucy’s story reaffirmed my belief and converted many people who witnessed her miraculous recovery.  The Ketogenic Diet achieved what no pharmaceutical could:  it stopped the seizures which allowed Lucy to develop as a normal child again.

PS:  Purple Day is the International Epilepsy Awareness Day.  Click here for more information

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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