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

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.

ADA – Know Your Rights – By Michael Wesel

Mike Wesel, Attorney & CPA

Mike Wesel, Attorney & CPA

Editor’s Note:  Unemployment rates for persons with epilepsy reach nearly 50%.  The Epilepsy Association is working to reduce this number.  On March 26, 2014, the Association is hosting a seminar for persons with Epilepsy looking for employment.  In addition to Mike’s presentation about your rights, human resource specialists will make presentations and provide hands-on, in-person help.  This includes a review of your resume and job interview role-playing.  Please share this information with everyone you know who has epilepsy.  To register log onto

This is my fifth 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.  The Epilepsy Association is holding a seminar entitled Ease into Employment: A Program to Kick-Start Your Job Search.  I was asked to present a segment entitled ADA – Know Your Rights as well as write this article with the same theme. This is a complex area of law and this article is meant to be informative and should not be construed as legal advice.

The Americans with Disabilities Act of 1990 (ADA) prohibited disability based discrimination and protects disabled persons from discrimination in employment.  The definition of disability under the ADA was gradually narrowed by case law.  In 2008 Congress passed the Americans with Disabilities Act Amendments Act which broadened the definition of a disability.  The Amendments Act and its Regulations (promulgated by the EEOC) indicate that the emphasis should be on whether discrimination has occurred not on whether the individual has a disability.

Before the ADAAA and its Regulations, Epilepsy, because of its episodic nature did not always meet the definition of a disability. The Amendments Act and its Regulations list Epilepsy as a condition that would always meet the definition of a disability.  Although the ADAAA and its Regulations do not create a list of “per se” disabilities, they created a list of conditions that “virtually always” will meet the definition of disability and Epilepsy is on that list.  Satisfying the definition of disability is just the first step in gaining protection under the ADA.

The ADA prohibits a “covered entity” from discriminating against a “qualified individual with a disability.”  A covered entity is defined in Ohio as a company with four or more employees, with fifteen or more employees and engaged in interstate commerce or a Labor Union.  A qualified individual with a disability is defined by the state as an individual “who with or without reasonable accommodation, can perform the essential functions of the employment position that such individual holds or desires.”  For example, if I don’t have a driver’s license, due to my epilepsy, I could not apply for a job that required me to drive and be protected under the ADA.

The employer has a duty under the act to make reasonable accommodations for its disabled employees.  This means that the employer must try to make the existing facilities readily accessible and usable to individuals with disabilities.  This can be done in a variety of ways.  However, an employer is not required to provide an accommodation if it would pose an undue hardship which is defined under the act as an “action requiring significant difficulty or expense” when considering the facts and circumstances.

The ADA prohibits employers from making inquiries about disabilities or requiring medical exams before an offer is made however, they can ask applicants about their ability to perform the essential functions of the job.  Once an offer of employment is made, the employer can require a medical examination, but only if all employees in that particular job category are required to do so, and the results are kept in separate files and treated as confidential.  The employer may not withdraw an offer from a disabled person based on the results of a medical exam unless the results bring into question the person’s ability to perform the essential functions of the job and a reasonable accommodation cannot be made.

The ADA does not protect an otherwise qualified individual if they are currently engaged in the illegal use of drugs.  The employer may also prohibit the use of alcohol.  The ADA takes no stance on drug testing.  It is neither prohibited nor encouraged by the act.

Once you have the job the ADA prohibits disability-based harassment.  Harassment can occur either by a supervisor or by coworkers.  Harassment is prohibited whether from the employee’s disability per se or from his request for accommodation.  No one deserves to be discriminated against no matter who they are.

Before I close, I would like to thank Sheldon Starke, a friend and colleague of mine, who practices in this area of the law and helped me get a good understanding of the ADA.  If you find this article intriguing and would like to hear a more detailed discussion of this topic and others, please join us at the Epilepsy Association’s Seminar, Ease into Employment on Wednesday, March 26th, 2014 at the Epilepsy Association Office.  March 26 is Purple Day® or the Global Epilepsy Awareness Day. Please don’t forget to wear purple, I know I will be!

I have had more seizures in public than I can count…

Mike Wesel
Mike Wesel
Hello everyone!  If you had read either of my first two blogs you would know that I have had epilepsy most of my adult life. I was first diagnosed with Epilepsy in 1972, when I was eight years old. My seizures were controlled later that year and I was seizure free for thirteen years. They returned in 1985 when I was twenty-one and they were controlled again later that year. My seizures returned again in 1992. I was twenty-eight and have had break through seizures, with varied frequency and intensity, ever since.

As Andrea Segedi at the Epilepsy Association and I were brainstorming (pun intended) about what I should write about next, she suggested I should write about having seizures in public. I have had more seizures in public than I can count. In the past my seizures came out of nowhere were very explosive and lasted about twenty to forty seconds with a period of confusion afterwards. Thankfully, the frequency of these intense seizures has decreased.

I have had seizures just about anywhere you can imagine including during Church. I have always been very open about my epilepsy. When I meet someone, it is not long after I introduce myself that I tell let them know that I have epilepsy. I try to let people know what to do, when and if, I have a seizure. This helps take the stress out the situation.

My friends and colleagues all know that I have epilepsy and know what to do. They respect me and treat me like any other person in my profession. When I fly, I always let the flight attendants know that it is unlikely but that I may have a seizure and what they need to do. If I am by myself and have a seizure in public, when I come out of the seizure I immediately let everyone know what has happened. I also always wear a medic alert necklace.

Although most people react in a positive way and want to help, there are people out there who don’t understand or recognize what is happening. When I was in college, I would often swear and talk out of context during my seizures. I did this during a seizure when my friends and I were at the movie theatre. As we were leaving a woman said “That’s some way for an adult to act in the movie theater.” I have only had this happen a few times during the many seizures I have had in public. You just have to keep a positive attitude understand that some people just don’t get it.

I believe that the key to dealing with seizures in public is to let people know that you have epilepsy and what to do if you have a seizure. Also, understand that there are some people who just won’t get it. I suggest keeping a positive attitude and a good sense of humor. I have done a lot of crazy things in my life and during a lot of them, I never was aware of what was happening.

About Managing a Professional Life and Seizures

As editor for the Insights into Epilepsy blog, I invited Mike Wesel to be a contributor for his site.  I first met Mike seven years ago when I joined the Epilepsy Association staff and he was a member of the agency’s Board of Trustees. Mike is a CPA and attorney in Cleveland, and a father of two boys.  He successfully manages a busy life even though he may experience a seizure at any time.  I believe the way Mike tackles everything with a can-do attitude including his professional and charity work, his family and his management of epilepsy contributes to his success and happiness.  Mike’s contributions to this blog will inspire others to persevere, to be happy and to have a gentle heart.   ~Andrea Segedi

I am an attorney and Certified Public Accountant. I live and practice tax law in the Cleveland Metropolitan area.  I was first diagnosed with Epilepsy in 1972.  My seizures were controlled later that year and I was seizure free for 13 years.  They returned in 1985 and were controlled later that year. After graduating from law school, I started having break through seizures around 1992. I have had break through seizures since then and they still continue today.

I started working for Ernst & Young (E & Y) in August of 1990.  I had been working for E & Y for approximately two years before my seizures returned.  At first my seizures consisted only of the aura, which was not very noticeable, and gradually got worse until they turned into the typical seizures that I had experienced in the past. I had already developed a working relationship with most people in the office so they did not react adversely to what was happening to me.  Even if they had reacted adversely to my seizures I don’t believe that I would have let it bother me; although, I was constantly worried that I would get fired or laid of because of my seizures.

This created a lot of stress at the time.  Most of my stress resulted out of the frustration I had over my seizures. I don’t like blacking out and losing control of my faculties.  I have learned to deal with this by maintaining a positive attitude and never losing hope that some day I may gain control of my seizures. Some people believe that this is unrealistic but who is to say what may happen in the future.

After I left E & Y, I worked in industry for approximately five years for two local companies in Cleveland.  After I left the last company,  I tried some home based business that were not successful.  I then tried to find a job with a law firm in Cleveland.  The economy was not good at the time and there were no openings for tax attorneys in Cleveland.  I was tired of not working and decided to start my own law practice.  I have found that wherever I have worked that most people are empathetic about my epilepsy.

Working for myself, although challenging and stressful in different ways has alleviated the worries of working for someone else and having seizures.  As my own boss, as long as I am to court on time I can keep my own schedule. Currently my seizures are less explosive and I don’t black out as much. However they still occur on a regular basis. I have found that keeping a positive attitude and a good sense of humor while letting the people around me know my situation helps reduce the stress and frustration of epilepsy in the workplace.  Never lose hope and be sure to wear purple on March 26th. I know I am!


~Michael Wesel

Welcome to the Epilepsy Association Blog


I am pleased to be writing the inaugural blog for the Epilepsy Association . I hope you will visit often, and find this blog site a place where you get useful and practical information about things that matter to those affected by epilepsy and seizure disorders . There is still so much that is unknown about epilepsy, and many people living with a diagnosis of epilepsy feel that they are alone on their life journey. We want this blog to provide—a lifeline for this journey. We hope this site is a source of information and inspiration.

As the CEO of the Epilepsy Association, it is my distinct pleasure to speak on behalf of those in our greater Cleveland community living with epilepsy. These remarkable individuals and their families work to overcome the difficulties and struggles that epilepsy can bring — and in spite of the seizures, they persevere and lead meaningful lives. Time and again, we receive calls from individuals who are discouraged and looking for ideas to address a problem at hand. They reach out to us to make a connection and gain support. We provide the support they need, and help these individuals leverage that support and encouragement to change their situation.

Dear reader, know that you are not alone and there are others who care about and share your experiences.

To learn more about the Epilepsy Association and the services we provide, please visit our website, our Facebook page or our Twitter feed.

~Kelley S. Needham