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!

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.