Epilepsy Awareness

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!

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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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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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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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March 26th is Purple Day, Epilepsy Awareness Day

Purple Day is Epilepsy Awareness Day

By: Beth Nuss

When my daughter Taylor was diagnosed with epilepsy I felt like it came out of nowhere. The seizures started subtly and went unnoticed for several months; still we knew something was wrong. Taylor was forgetting her homework, going to bed in her day clothes, and wearing the same outfit two days in a row. None of that would be considered normal behavior for a thirteen-year-old girl. When I spoke to the pediatrician about these occurrences, even she didn’t immediately suspect epilepsy. Even after a battery of tests, including an EEg, her condition couldn’t be labeled as epilepsy because there wasn’t any hard evidence.

 Finally one day we observed a seizure for the first time. I can only describe it as a short period of time where she was unaware of her surroundings followed by lip smacking and picking at her clothes. These seizures became more frequent and more pronounced as time went by. Eventually the evidence made it clear that Taylor had epilepsy. She was treated for the next eight years with many different anti-epileptic drugs, each of them failing after a few months of use, while the seizures became worse and very noticeable. I was fearful that she would get hurt.

 School work became an exhausting chore. Her memory grew increasingly worse as the seizures continued and the mind numbing drugs made her inattentive and tired. The school listened to my concerns and tried to understand but they were not equipped to deal with a child with epilepsy. They had never dealt with it before and were completely unaware when Taylor was seizing in school but I knew it was happening. After seven years of seizing at home sometimes ten to twenty times a week, it’s impossible to think that it never occurred between the hours of 8am and 2pm Monday thru Friday. I would like all teachers to be trained to notice when children in the classroom are behaving strangely, attempt to identify what is happening and report the actions to the child’s parents.

 I feel like there is a general unawareness of what epilepsy is and how it affects patients and their families in our society. Countless times I tried to explain to people who ask, “how’s Taylor doing?”, that the meds aren’t working, she’s still seizing, she has trouble learning, she can’t remember, she’s tired all the time, she doesn’t laugh and smile like she used to, she can’t drive, she can’t swim, etc. etc. etc. It is hard to understand when you don’t live with it daily and have never witnessed a seizure. And that’s one of the reasons I would like to bring more awareness to epilepsy.

 Fortunately Taylor was finally able to have epilepsy surgery and has been seizure free ever since. Her two-year anniversary is coming up on March 26, 2015, on Purple Day. She still takes some medications as a precaution but her activity level, confidence and overall disposition is markedly better. Our family will celebrate Purple Day together at The Harp with the Cleveland Epilepsy Association and we will continue to support the many families in our community struggling to come to terms with the diagnosis of epilepsy and the enormous challenges it brings.

 

 

 

 

 

 

 

 

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Good People, Good Hearts

Tina has been a client of EA since fall of 2014. Tina’s family struggles significantly with finances and making sure that they have all that they need. Several individuals from Upsher-Smith pharmaceutical company wanted to help someone in need for the holidays. Out of their own pocket they donated money to a pit and reached out to the organizations that they work with for nominations of a client/family in need. Each person took their story to the group and a vote took place. Tina’s family won the vote and her family received a gift of money to help make the holidays special. Tina is newly married and has fourteen-year-old twins, a sixteen-year-old, a twenty-year-old son who is developmentally delayed, and a twenty one-year-old daughter who just got a new job and is finishing her GED. Tina’s agency worker presented this gift to her the week before Christmas and explained who it was from. Tina was so overwhelmed and grateful for this gift because she said that it meant that she could give her whole family the Christmas that she wanted for them that would otherwise be impossible due to her financial situation. Tina’s overwhelming emotion over receiving this gift was so touching, because she is so deserving of it. Tina’s agency worker assisted her in shopping for gifts and food for her family for Christmas and helped her make a list and follow the budget. Tina chose to buy practical gifts for her children since they needed new items like socks and underwear. After the shopping was done, Tina expressed that she wanted to make it a surprise for her family so she and her worker brought everything into her house without the rest of the family and hid the gifts from her children so they would be surprised on Christmas day. Tina’s family woke up on Christmas morning with gifts and a beautiful Christmas dinner all because these few individuals showed the true meaning of Christmas. In Tina’s mind these generous people are “Christmas angels” and will forever be in her heart.

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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:

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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