Erase the Stigma

And the Winner is…
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And the Winner is…

Each year the Epilepsy Association recognizes a client that has made significant progress in their goals related to their epilepsy and mental health.   Selecting the client of the year is a difficult process as we are so proud of all of the individuals that we serve.  This year Julia Clouden- Jones was selected as the Epilepsy Association’s Client of the Year.  

Think back and reflect on your own life.  What have you accomplished in the last 19 months? Did you lose that 15 pounds? Get a new job? Clean out that closet that has been collecting all of the odds and ends in your home?   

In the last 19 months there have been 2 holiday seasons, 2 spring break weeks, 1 tax season, and of course who could forget , 1 NBA Championship win! 

The last 19 months for Julia have been quite the adventure. When Julia came to the Epilepsy Association she was homeless, in an unhealthy relationship, had uncontrolled seizures that were epileptic as well as non-epileptic, did not have health insurance, and was desperate for help.  She wanted to stand on her own two feet, and needed some help.  Julia was eager to begin services and once she did she moved along so quickly.  Throughout her time as a client in the Adult Case Management Program Julia was able to completely turn her life around.  

In the last 19 months Julia was able to:

  • End her relationship and move forward
  • obtain and maintain health insurance
  • obtain and maintain disability benefits
  • engage in counseling
  • obtain and maintain her own apartment
  • engage with a neurologist who informed her that she was candidate for epilepsy surgery
  • had a successful epilepsy surgery which significantly reduced the frequency and severity of her seizures 
  • Due to her counseling and other positive  changes in her life her non-epileptic events  are no longer occurring
  • increase her self esteem
  • improve relationships with family members

Julia is a true inspiration! On June 16th, 2016 Julia was awarded the 2016 Client of the Year Award.  She humbly accepted her award and spoke at the Annual Meeting about the impact that the Epilepsy Association has had on her life.   Tears filled the eyes of the audience members as they witnessed this amazing example of strength and perseverance.  

Julia continues to surpass all of her goals and sets new ones for herself. We look forward to seeing where her journey takes her as we know it will be a beautiful ride.

Julia with her EA Case Manager, Nicole Richter
Julia with Peter NElson, EA Board of Trustees PResident, and Lacey Wood, Director of Community Programming at EA

Congratulations Julia!

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!

2016 Featured Family 11th Annual Winter Walk
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2016 Featured Family 11th Annual Winter Walk

Tillman Family—Kaycee Tillman
Nominated by: Allison Hamilton, Kaycee’s Aunt

Our story began after Thanksgiving 2014 when we noticed Kaycee did not know the answer to simple questions and just seemed “out of it”. My husband called and said something is wrong with Kaycee, she didn’t know what a brush was when I asked her to bring it to me. This was the second episode in less than a week, and our pediatrician’s office instructed us to take Kaycee to the ER immediately! They ran tests, but everything came back normal. They told us it was probably a virus and to wait it out.  It took time and persistence to figure out she was having absence seizures. After a month filled with hospital visits, doctor appointments and, seizure after seizure, were finally were able to start her on medication. From there, we began adding new medication after medication to the mix hoping one would work!

In March 2015 things took a turn in the wrong direction. Kaycee had a convulsive seizure called tonic clonic seizure. Close to an hour after the seizures started, it finally began to subside and we were in a helicopter on our way to Nationwide Children’s Hospital in Columbus. This was my worst nightmare and the most helpless I’ve ever felt.

Kaycee came through that night and the seizure didn’t dull her shine. Following this change in seizures, she began having different types of seizures several times per day. The atonic seizures would make her fall with no warning at all including down the flight of stairs in our house several different times.  Her little body was covered in bruises from head to toe.

I admitted to myself these were not going away, so I began researching seizures.  I discovered a term I had never heard before “SUDEP” or sudden unexplained death of an epileptic person.  That’s where that pit in my stomach comes from – the fear of her slipping away from me while she’s sleeping. My research put me in contact with a wonderful network of individuals who are supportive and full of information when needed.

Currently, we still have no answers. While the seizures are not as severe, we can count on them showing up most days. We take it all in stride and try to let Kaycee be as independent.

The fact that my baby has to deal with these health issues is horrible, however, this path has put us in contact with wonderful individuals and organizations. Kaycee was granted a trip for our family to attend Epilepsy Awareness Day at Disneyland. It also allowed us to meet wonderful families with common concerns and gain valuable knowledge at the Epilepsy Expo. We met families with children from all over the epilepsy spectrum.

Since the beginning of our story, Kaycee has started kindergarten and is doing well at her school. They care for her and make sure even if she has a seizure she is able to stay at school for the day if possible. They have thought through all aspects of having her at school and continue to adjust and make necessary arrangements. I am so grateful we were lucky enough to start with such a wonderful and caring team.

In August, we began working to get Kaycee a trained seizure dog and through the generosity of so many of our family, friends and strangers we raised enough money. The outpouring of support was wonderful and more than I could have ever anticipated.

I choose to look at the positives and all the good that has come out of this experience. I will continue to be Kaycee’s biggest fan and fight for whatever she needs while continuing to follow Kaycee’s lead of positivity for her future.

We are proud to be one of this years Featured Families and we hope you’ll support, Kaycee, our family and the Epilepsy Association at the 11th Annual Winter Walk for Epilepsy on January 30!

 

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Hope

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

Hope

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

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

Sometimes we may go through very crazy and trying times.

Having that hope can really start to ease your mind.

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

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

I have been feeling very hopeful as of late.

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

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

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

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

8/8/15

By Mark Johnson

Mark Photo

 

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James- Hard work really does pay off!

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

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

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

James with his certificate of completion

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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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Increasing Epilepsy Awareness by Michael Wesel

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

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

This is my sixth blog for the “Insights into Epilepsy” website. I have intractable epilepsy and over the last twenty years I have had break through seizures, with varied frequency and intensity. There is something really cool going on this fall at the Epilepsy Association. They have commissioned Cleveland Outdoor Muralist Katherine Chilcote to paint a forty foot-long by eight foot-high mural that will be placed on the east side of the association office building. The purpose of the mural is to increase awareness about epilepsy, bring attention to the agency and contribute to the revitalization of the neighborhood, by depicting the life experiences of people who live with epilepsy.

In order to help the artist complete the mural, the agency held a charrette, which is a community meeting or focus group where the stakeholders of a project get together and find a solution to an issue at hand. The people who attended shared their life stories and experiences living with epilepsy. This meeting helped Katherine create the imagery that is expressed in the mural. The mural depicts a public expression of the life experiences commonly shared by people who suffer from epilepsy. This fall you should drive by the Epilepsy Association offices and take look at the beautiful mural that Katherine is creating.

Sharing experiences at the mural charrette

Sharing experiences at the mural charrette

The agency has not yet reached its funding goal for this project. If you are interested in donating, make your checks payable to the Epilepsy Association and mail to 2831 Prospect Avenue, Cleveland, Ohio 44115-2606. For more information contact the Epilepsy Association: Andrea Segedi, Director of Special Gifts & IT, (216)579-1330 or email her at asegedi@epilepsyinfo.org

If you need information about epilepsy or know someone who needs help coping with epilepsy, the Epilepsy Association of North East Ohio might be able to help or let you know where you can get help. Give them a call at 216-579-1330.

Blogger Mike Wesel

Blogger Mike Wesel

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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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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.