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

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.

2016 Featured Family    11th Annual Winter Walk

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!

 

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

 

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!

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

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.

 

 

 

 

 

 

 

 

Joe’s Story

Joe is a client that sought out services with the Epilepsy Association last year after a lot of encouragement from other people in his life. Joe was struggling being out of work after a stressful departure from his last job due to seizures and anxiety issues. When Joe first started working with a case manager from EA, he struggled with issues on what his next step would be in life. Joe also struggled with relationships and trying to gain a sense of independence. Joe took several positive steps for himself during the next several months by being more open in relationships, seeking out career assistance, and using positive coping skills to manage his anxiety.  Joe participated in the Employment Seminar put on by the Epilepsy Association in March of 2014 to help improve his resume building skills, interviewing skills, and learn more about his rights as a person with epilepsy in the workforce. Today, Joe is employed in a full-time position, living independently, and continuing to find new skills and aptitudes for himself. He is currently enjoying painting and says that it helps him therapeutically by being able to learn a new skill and express himself in a different way.  Joe is just one of the many successes that come out of the Adult Case Management Program at the Epilepsy Association.  He has shown great aptitude and initiative in working through the barriers placed in his life due to his epilepsy.  Joe has worked very hard along with his case manager to make positive change in his life.  Congratulations Joe!

Joe Keep up the great work!

Joe
Keep up the great work!

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.

“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

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.