Epilepsy Awareness Month: Follow-up Interview with Michelle Reichartz

I am feeling pretty emotional right now.

Maybe it is from spending the day with so many amazing, committed and passionate epilepsy advocates and families either exhibiting or attending the Epilepsy Awareness Day at Disneyland Expo.

Michelle Reichartz

Maybe it is pure exhaustion from spending the day talking with epilepsy families about our 365 Caregiving Tips books (we had a booth at the expo).

Maybe it is because I not only got to spend time with Other Brother but also my co-authors and friends, Kathy and Gincy. The screaming, hugging, laughing and more screaming and laughing and hugging with more to look forward to tomorrow.

I suppose it could be because Robert was overwhelmed with activity and stimulation yesterday and today that his seizures kept coming today. Listening to him tell everyone he was “excellently great” between seizures both warmed my heart and broke it in a million pieces.

It could also be because I do love a good underdog story and, while writing this, I am watching the Cubs come within one out from a World Series win. (Although I can’t help but feel bad for Cleveland since everyone must be rooting for the Cubs to finally win a World Series.)

Whatever the reason, my emotions feel a bit raw right now and reading this follow-up interview with Michelle Reichartz made me tear up a bit. She struggles yet she perseveres. I mean, look at that smile! 

Michelle got her Master’s degree and is hoping to next work on her Ph.D.! She takes the time to talk with parents of kids with her form of epilepsy because the parents want to know what their kids are struggling with.

She struggles yet she perseveres AND she helps others.

I loved learning about Michelle in 2012 and love seeing that her resilience still shines four years later.

Robert’s Sister:   I interviewed you in November 2012 and I am curious what changes have occurred in the last four years.  Please remind us how epilepsy has affected your life.

Since last time, I’ve actually taken a new job and moved to South Carolina. I have myoclonic astatic epilepsy, but for the most part it’s inactive. My biggest triggers are stress, strobe lights, and sleep deprivation.

Robert’s Sister: What is the most significant change in your life since our last interview?

Taking a new job and basically uprooting my life to another state. My parents and brother live in North Carolina, so I’m close to my family again. However, it’s been a big shift going from living with my parents or roommates to living on my own.

Robert’s Sister: Has the treatment changed for you or your loved one?

I still control it through diet and lifestyle changes. It’s definitely a struggle still since my job can get really rough stress-wise, but it's worth it. I function better without medication; can clear my head much better. The ketogenic diet is what makes the biggest difference.

When I was on the medication at a younger age, I felt trapped in my own skin. In a lot of ways, it felt like I was stuck in a glass box that no one could hear or see me in. It’s an absolutely awful feeling, but I’ve met a lot of people over the years who have told me they know where I’m coming from. I’m a HUGE advocate for epilepsy research and many times I’ll run into parents of kids with the same form of epilepsy I have. They love asking me questions, probing my perspective so they can better understand how their own kids feel. I love doing it because I know it makes a world of difference for their relationship - it’s something my parents and I always wished we had the access to.

Robert’s Sister:  What sort of cognitive, intellectual, emotional or physical changes have you noticed these last four years?

I’m definitely struggling to keep my progress. The stress is the hardest part - it has such an impact on my ability to think that whenever a little is present in my life, I have a very hard time holding it all together. I have made a really strong point of only keeping people in my life who help me relax and stay calm. It’s not always easy, but it’s become essential to stay seizure free. The people around me have the biggest influence on my emotional and cognitive abilities.

Robert’s Sister: What caregiving help do you use? 

None - when things get really bad, I lean on my parents for help. However, that’s far and few between - for the most part, I’m okay with the ketogenic diet alone.

Robert’s Sister: Do you think your life with epilepsy has improved, stayed the same or become worse these last four years? Can you tell us why you think so?  

Stayed the same. It’s always been a roller coaster for me. For a few months, things go really well and I have almost no issues at all. Then for a few months I really struggle to hold it all together and I start to get depressed - that’s when I get seizures again (if at all). I get frustrated still a lot because I wish there was a way to improve my epilepsy, but with all the research I’ve done - I know I’m doing the best I can.

Robert’s Sister:  What has been your favorite moment these last four years? 

Graduating with my Master’s Degree in Business Administration. It’s something I never thought I’d achieve.

Robert’s Sister: What do you see for yourself or your loved one in the next four years?

I’d LOVE to get my Ph.D. in Organizational Behavior, so best case scenario I’m in school doing that in 4 years!

Robert’s Sister:  Is there anything else you want to say?

Like many invisible diseases, epilepsy is a daily struggle. It’s easy to forget that someone is crippled by the disorder when you can’t see the harm it does to them from the outside. Never forget to have patience with anyone who has an invisible disease - it makes a world of a difference to me when someone chooses to take the time and let me figure my way out of the pain. It’s the hardest part about every day and night.

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business. 

Please support CURE - the work they do is so essential to better research into how epilepsy works and without that, we’ll never find a cure for epilepsy.

Thank you for your time, Michelle! I cannot wait to hear when you get your Ph.D.!

Trish

Epilepsy Awareness Month 2015: A Sea of Advocacy

Our recent trip to the Epilepsy Awareness Day at Disneyland brought us face to face with many wonderful and inspiring advocates – all full of life, laughter, education and a passion for managing and curing epilepsy!

Epilepsy Awareness Day at Disneyland not only is a way for families affected by epilepsy to connect with others while being at the Happiest Place on Earth, it is also an educational opportunity.  EADDL was started three years ago by Brad Levy and his wife, Candy, along with the enthusiastic support of pediatric neurologist, Dr. Diane Stein. These three are tireless advocates not just for great epilepsy care but for a cure for epilepsy.

Dr. Diane Stein and Robert

While I did not have an opportunity to meet the Levy family (next year for sure!), I did meet Dr. Stein as did Robert. They became fast friends and we promised to participate in the International Epilepsy Day which is February 8, 2016. 

Fact: There are approximately 65 million people world-wide living with epilepsy (Epilepsy.org). 65 million people affected by epilepsy – not even counting families, friends and caregivers!

There were so many advocates at EADDL!

Julie Hutchison and
Robert in a  Mickey Mouse nose

Seeing Julie Hutchison, founder of the Chelsea Hutchison Foundation, is a delight for me (and obviously Robert). Julie’s foundation is a founding partner of the EADDL and has raised money to bring several families to the event each year. Also, through their advocacy, CHF recently gave their 84^th grant for a seizure response dog! Julie’s story is one of resilience yet is heartbreaking. Julie and her husband, Doug’s beautiful daughter Chelsea died from SUDEP.  They walk through that unfathomable grief to help others. Julie shared with me during one of our chats, “It is the reason I get up in the morning.” That kind of advocacy is an inspiration.

Julie is an inspiration.

Fact: Epilepsy is also a disease that can be deadly.  According to CURE Epilepsy, “It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents." 50,000! This number stuns me every time I read it.

The EADDL Educational Expo brought a day of speakers and a large conference room of advocates and exhibitors. The Expo was full of a wide variety of organizations sharing information (medical professionals, dietary experts, medical technology companies, service dog companies and many, many others. You can see the complete list here.) 

EADDL 2015: Expo Room

Another EADDL founding partner, the Danny Did Foundation, was at the Expo. CURE Epilepsy was there. The Purple Peace Foundation was there. Livy’s Hope, Sophie’s Journey, International League Against Epilepsy all were there.

EADDL 2015: Expo Room

Families visited each booth soaking up the information so they can be the best advocate they can. 

Fact: While two-thirds of people with epilepsy are able to find good seizure control, the fact is one-third do not (Epilepsy.com).  That is one-third too many!

Many advocates and organizations were borne out of the loss of someone to epilepsy or have been affected by epilepsy in some way and are advocating for the cure or management of epilepsy.

All an inspiration. All doing something to manage or cure epilepsy.

The day in Disneyland did not have had exhibitor booths but there were probably a couple of thousand families enjoying the park in their EADDL purple shirts. Each one of them an advocate in their own way for their friend or loved one with epilepsy.

Watch out, Epilepsy! You cannot win against this much advocacy.  

EADDL 2015: A Sea of Advocacy

Epilepsy Awareness Month Day 26: Epilepsy Rant

I am usually a positive person but today has been especially trying. I realize tomorrow is Thanksgiving and I should be espousing everything I am grateful for.  I will. 

Just not today. 

Today I am on a rant. 

Epilepsy sucks.  It is more insidious than people realize.  People who have seizures lose minutes, hours, and days of their life.

Epilepsy has no regard for schedule. Does it care tomorrow is Thanksgiving?  Absolutely not.

Epilepsy changes without warning.  I am used to Robert’s Complex Partial Seizures. He averages 20 – 25 seizures a month. This month, his seizures are out of control.  He has had not one but two days of non-stop cluster seizures (totaling at least two dozen each day).

When it happened earlier this month, we thought maybe he was super excited about our trip to Disneyland.  We (meaning me and his neurologist) couldn’t figure out any other reason for the unusual cluster. I chalked it up as anomaly.

Then it happened again – three weeks later. 

Are his seizures changing?  Are we moving from one or two every few days with an occasional cluster of 3 – 4 to a few dozen in a day? Will this become the norm? 

Who knows!  Because epilepsy is unpredictable and in a third of people with epilepsy it is never controlled.  Never.

Epilepsy kills. Yes, it kills.  Fifty thousand people die annually in the United States from epilepsy (prolonged seizures, SUDEP, and accidents caused from seizures).

50,000!

Epilepsy changes lives. A woman – a kind, wonderful woman – loses her daughter and mother to seizures. A mom takes a low-paying job because it allows the flexibility to support her son who has epilepsy follow his dreams. A mom advocates for the legal use of CBD after seeing her son’s epilepsy continue to be uncontrolled. A man and his wife care for their disabled son and have sat bedside with him numerous times when he was on the brink of death. A confident, empowered woman becomes self-conscience because the of damage epilepsy medications have done to her teeth.

Let's do more research to find a cure for epilepsy.  Let's do more advocacy.

Let's do more ranting. 

Connecting all the Pieces

I was recently asked by a friend how Robert’s pulmonary issues are connected to his seizures.

I thought this was a terrific question and one I have been trying to understand ever since his pneumonias started showing up a couple of years ago.

But first, I had to sing “The knee bone is connected to the thigh bone, the thigh bone is connected to the hip bone, the hip bone is connected to . . .” You get the idea.

I couldn’t help myself.

That is the million dollar question. How are the seizures related to his proclivity to develop pneumonia at the drop of a hat?

Robert’s pneumonias have always been classified as aspiration pneumonia. Sometimes, the pneumonia doesn’t even show up on the x-ray which confuses the heck out of the ER personnel. However, a doctor once told me that it is not always possible to diagnose pneumonia by x-ray – it is diagnosed through symptoms.

Robert has the symptoms every time and we are well aware of those symptoms (cough, fever, high pulse, low blood pressure, reduced mobility and “brain fog”).  In Robert’s case, sepsis is usually an unwelcome companion with his pneumonia (and no matter how quickly we recognize the pneumonia, the sepsis sneaks in there).

The pieces are starting to come together with each new specialist Robert sees.  A year ago during one of the hospitalizations, Robert saw an ENT and was diagnosed with dysphagia (a swallowing disorder) which was thought to be causing his aspiration pneumonias.

Great! He was put on a modified diet (called either “chopped” or “mechanical soft”) and thickener was added to all of his drinks.

Two months later he was hospitalized again with pneumonia so this wasn’t the only piece of the puzzle.

Earlier this year, Robert’s pulmonary doctor did a couple of scans of Robert’s lungs and concluded that his lung muscles were weak and there really wasn’t much more to do other than try to manage the symptoms before Robert needed hospitalization. He explained that the lung muscles were weakening much like Robert’s leg muscles and other muscles were weakening and it would just be a matter of time before he couldn’t recover from one of his pneumonias.

I appreciated his frankness and the explanation of what was happening. Since then, Robert developed his typical pneumonia symptoms five times (that’s just this year) and the pulmonary doctor put him on antibiotics each time and we were able to keep him home while he recovered.

In June, however, Robert’s mobility was really taking a hit.  His leg muscles were getting exceptionally weak. He could no longer use a walker and we had to use the wheelchair 100% of the time.

I still didn’t know what was causing this muscle weakness and the decline. The decline seemed to be so rapid that it was head-spinning. It was all my husband and I could do to try to keep up with Robert’s increasing needs.  

Finally, the neurologist told us to go to the hospital.  They weren’t sure what was going on either but suspected a neck compression on the nerve in his spinal column (which would really suck). He needed to be in the hospital to investigate further.

We were fortunate that the neurologist on staff during Robert’s hospital stay was a specialist in movement disorders.  She was easy to talk to but exceptionally brilliant. Robert couldn’t have been in better hands.

She determined that Robert did have a neck compression but it wasn’t severe enough to cause him to lose his mobility. Instead, she diagnosed him with Cumulative Traumatic Encephameylopathy and Parkinsonism and started him on a new medication (Sinemet) which helps manage the symptoms. Combined with physical therapy, Robert’s mobility returned to a level I hadn’t seen in months.  It was such a relief.

I had a question about Parkinsonism which the neurologist answered at Robert’s most recent neurology appointment: it is different than Parkinson’s disease. Parkinsonism is just the symptoms of Parkinson’s disease and not the disease itself.  Parkinsonism can cause muscle weakness (including the lungs), movement disorder (Robert’s muscles were weak but they were rigid), tremors and swallow difficulties.

Things were starting to make sense.

From what I understand from the neurologist, the CTEM and Parkinsonism are caused from brain trauma Robert sustained due to a lifetime of uncontrolled seizures, two brain surgeries and dozens of concussions (caused from falling during a seizure).

This does make more and more sense to me. I think of Muhammad Ali who developed Parkinson’s syndrome due to being bashed in the head multiple times during his boxing career.

The brain can only take so much trauma.

Robert sees many specialists (three neurologists, a pulmonary specialist and not just an ENT but an Otolaryngologist for his swallow disorder) - and don’t ask me to pronounce that type of doctor!

It seems recommendations for treatment and piecing together the puzzle of his illnesses is pretty fluid. Prescriptions change, medication dosage changes, even his diet recommendations change (Robert no longer needs thickener as the doctor thinks that makes swallowing more difficult for him). 

Richard and I just manage the best we can and help Robert understand what is going on with him as much as we can.

We know that Robert’s body doesn't handle illness as well as the rest of us because of the compromised brain function which ends up affecting his mobility and creating sort of a "brain fog." He forgets words, has trouble telling us what he wants to say and has a weaker grip on his pen so has trouble with his word search books. He gets drowsy and slow and the ability to walk becomes a luxury until he recovers. For the same reason, it also takes him a lot longer to recover from any sort of illness.

He is sick again now and on antibiotics. He has trouble walking, is having breathing difficulties and has his brain fog. I am monitoring his vitals closely in case there is an indication he needs to be hospitalized.  

That's my understanding of the inter-related workings of his issues. 

Epilepsy with uncontrolled seizures to brain trauma to Parkinsonism and CTEM to pulmonary problems, dysphagia and mobility issues. 

I may not have all the pieces or understand all of what is happening but the idea that everything that is going on is related and is really ultimately caused by his uncontrolled seizures renews my advocacy to spread awareness about epilepsy.

There is not a lot of research out there about the effects of epilepsy on adults with uncontrolled seizures.  However, I don’t need to learn what happens by reading about it.  We’re living it and I would love nothing more than to stop epilepsy in its tracks.

(Obviously, not everyone will have the same experience as Robert so it would be nice to have more research about the effects of uncontrolled seizures.)

Please help me spread awareness about epilepsy and, if you’re so inclined, check out a few epilepsy organizations that do terrific work researching epilepsy and educating people about it:

CURE Epilepsy

The Epilepsy Foundation

Purple Day for Epilepsy

Wednesday, March 26 is the Global Day of Epilepsy Awareness (also known as “Purple Day” thanks to 15 year-old Cassidy Megan, founder of the Purple Day Organization). 

Purple Day 2012

Along with many other epilepsy education advocates, I will be wearing purple. A purple sweater, purple earrings, and a purple bracelet – heck, my nails are painted purple and I might even break out my purple shoes. 

Why am I wearing purple?  After all,

Wearing purple is not going to cure epilepsy. 

Wearing purple is not going to stop the increased seizures Robert is having.

Wearing purple is not going to increase funding for epilepsy research.

Why am I wearing purple?  I am wearing purple because:

My brother, Robert, is 1 of 3 million Americans who has epilepsy;

Robert’s seizures are not controlled but he is hardly the exception. A third of people with epilepsy have seizures which can’t be controlled with treatment and which can lead to brain damage and death;

Robert wants to spread awareness about epilepsy and I promised him I would help;

I want to dispel myths about epilepsy. To be clear: it is not contagious; it does not mean the person is possessed and a person cannot swallow their tongue during a seizure;

Epilepsy is not something to fear;

Robert has Complex Partial Seizures – one of 40 different kinds of seizures;

But mainly, I am wearing purple because:

Robert has had epilepsy his entire life. I remember him as an energetic, curly-topped boy who was notorious for getting lost in shopping malls. He struggled in school but managed to take a few community college courses once he graduated high school (a feat our mother wondered if he would ever accomplish).  Robert lived by himself and with a companion (she also had epilepsy) and they were able to care for each other for many years.

Now, Robert lives with me and my husband because he can no longer take care of himself. He needs help taking his medications, getting dressed and cleaning up in the bathroom.  Robert wears a helmet because his seizures make him fall, he uses a walker because his balance is awful and repeats questions because his memory is pretty terrible. 

I have seen Robert deteriorate through the years due to the uncontrolled seizures, the medications, the surgeries, the accidents and the falls. He has had mood swings due to the medications and can be stubborn and obstinate as heck. 

But mainly, Robert teaches me that it is okay to enjoy the simple things in life. He is happy watching Family Feud and doing his Word Search puzzles (usually simultaneously so multi-tasking obviously runs in the family). He enjoys Rocky Road ice cream more than anyone I have ever seen and would eat it after every meal if we let him.  He has found comfort in what seems to be a direct pipeline to God – he prays for everything and everyone. I do not have this kind of faith but I admire him for his conviction and his beliefs.

Our family never thought Robert would live a long life. We weren’t being morbid but knew that with his determination to be independent and his uncontrolled seizures there was a strong possibility he would die young. He almost did – he had a seizure in a swimming pool as a teenager and was saved only because our dad immediately jumped in after him. He was in a coma for a few days but he survived.

It was after this coma that he felt his purpose was to spread awareness and education about epilepsy. 

I am wearing purple today to celebrate Robert’s determination, his persistence and his purpose. 

Please don’t be afraid to ask me about epilepsy and don’t be afraid to talk about epilepsy. 

Help Robert spread epilepsy awareness – wear purple! 

(And if that means buying a new pair of purple shoes, you have my full support albeit tinged with a little bit of jealousy!)

Epilepsy Awareness Month: Advocating for Awareness and Answers - Interview with The Epilepsy Warriors Foundation

Because I am on vacation (part of which is in Florida), I thought it fitting to share my interview with Susan Noble of The Epilepsy Warriors Foundation which is based in Florida.

Before getting to the interview, though, let me just say how grateful I am I haven’t seen any alligators in Florida. I don't actually know how common they are since I've never been here but my heart stopped for a second when our pilot announced we were flying over Alligator Alley. I figured we were safe as long as we weren’t in need of an emergency landing so didn't panic. Too much. 

Susan Noble, President and Founder of
Epilepsy Warriors Foundation

Vacation has been fantastic so far and it’s been exciting to be in a state I haven’t previously visited. Robert is in good hands and is being spoiled rotten by the staff at the wonderful facility where he is staying. I imagine we will both have plenty of wonderful stories to share once vacation is over!

In the meantime, Epilepsy Awareness Month is continuing and Susan is one of the people doing amazing work in spreading awareness and education this month and always. Last week, CURE told us about their organization and all they do to find a cure for epilepsy.    

It is such an honor to introduce people with such passion and drive to help others and I have many more interviews this month with some amazing organizations.  

Susan is one of those inspirational people. Please meet Susan:

As President and Founder of the Epilepsy Warriors Susan Noble is striving to reach as many people within the local communities to help educate and bring an end to the stigma of Epilepsy.  It takes team work. It involves supporting each other in all efforts. It means showing the world that Epilepsy is worth researching, fighting for, and funding. We are all fighting for a CURE for our children and those “Living with Epilepsy” every day.  We are a new foundation one with a passionate vision. This vision will light our path, and guide us towards our goals of “enlightening, empowering and curing.”

Susan and her family spend time in both in Fort Myers, Florida and Chicago, Illinois.

Robert’s Sister:    Tell us the name, mission and goals of your organization. 

The Epilepsy Warriors Foundation

Our Mission is To Empower, To Thrive, To Prevent, Control and Cure!

The Objectives and Goals for The Epilepsy Warriors Foundation are:

• Opening of Epilepsy Resource Centers in Fort Myers, FL and Chicago, IL.;
• Help and assist those in the local communities in need of finding a Service Dog, Supply Helmets to Children and families in need;
• Raising awareness about Epilepsy and SUDEP on the local, national, and international levels and among lay professional and legislative societies alike;
• Educating students and teachers about Epilepsy, with an emphasis not on FEAR of the disorder, but the proper care and management needed for living well in spite of Epilepsy;
• Assisting in the education of community members, caregivers, and loved ones as to the appropriate steps needed to care for someone having a seizure;
• Working with local hospitals, neurologists, practitioners and clinics to provide patient education and awareness about Epilepsy and SUDEP risks;
• Providing a community-based forum in which patients, professionals and loved ones concerned with the disorder can become proactive and involved in advocacy and the search for a cure;
• Working with representatives within the Med/Pharma Industry not only to ensure community access to Patient Assistance Programs, but also to influence the strategic direction of pipeline products and technology related to the disorder;
• Providing resources outreach and much more to help parents and families within the Epilepsy community;

Robert’s Sister:  When was your organization founded and what was the catalyst for forming the organization?  

The Epilepsy Warriors Foundation became a registered foundation on May 26^th, 2011 and a legal 501c3 Non-Profit on April 11^th, 2012. The catalyst for my starting the foundation: knowing of parents losing children under the age of 4 between the fall of 2009 and spring of 2010 and the lack of resources, support for parents who lost a child to epilepsy, and seizures.

Robert’s Sister:  What do you see as the greatest need for epilepsy awareness or advocacy and how do you help fulfill that need? 

We must improve public awareness and knowledge; include media journalists as well as writers and producers in the entertainment industry; engaging people with epilepsy and their families from local communities in public service announcements - this all helps in spreading awareness.

I do that by speaking on television when the opportunity is given. Talking to people I meet in the store or at a local business. I hand out my business cards brochures. I send a lot of brochures and fact sheets out to other organizations that are attending or participating in conferences. Education is the key knowledge is Power.

Robert’s Sister:  What do you want people to know about epilepsy and the people you are working to help?

That epilepsy is not contagious; it’s not something to fear. That, yes, it’s a struggle - that it can be overwhelming but if you surround yourself in support and become involved with those that are walking the same journey can relate to how you feel  you can and will get through it. We are here to help make this journey as easy as possible we know it can be challenging and we are committed to supporting you as best we can. We are proud to say “You are not alone!”

Robert’s Sister:  What are some events your organization hosts in order to raise funds and awareness?

We have hosted a dinner have done epilepsy awareness with our local baseball team the Miracle. We hosted a Purple Day event and on November 18^th we are hosting our first luncheon. We also recently did an event on epilepsy and contact sports.

Robert’s Sister: Tell us about your successes!  

I have been so fortunate to have been able to connect with some of the best in the medical field and get the support of some amazing doctors behind me I think that is the most successful accomplishment I have been able to do since starting the foundation. I also have gotten support from many friends, as well as businesses and other organizations. Each time another organization reaches out to unite or want to collaborate that is a success because we can do far more together united as a team for the greater good than we can as individuals.

Robert’s Sister:   How has epilepsy and your organization affected your life?

Epilepsy and the foundation have changed my life in ways I never even possibly could have imagined. It has changed me personally and spiritually for the better.  I never truly intended to start a foundation but for months after seeing the lack of resources for families that lost a child or needed support I kept experiencing strength far greater than my own leading me in the direction towards doing something to make a difference to honor the memories of our children. To let parents know they are not alone I believe this was God calling me to serve.  Best call I ever answered.

Robert’s Sister:  Please tell us what your involvement with your organization means to you.  Has this affected your own personal purpose? 

This organization means everything to me, there is nothing I would not do for these families and for the children. This is my passion - my purpose in life - and I want to leave a legacy for the children in my own personal family to be inspired, to serve, to help make the lives of those in need a little brighter and show compassion and unconditional love for those lives they touch. To grow up to find their passion in life and run with it knowing they can be and do anything they set their minds too.

I want them to have a purpose and use it for the greater good!

Robert’s Sister:  Is there anything else you want us to know?

The Epilepsy Warriors Foundation feels it is important to reach out to as many people and companies as possible to help raise awareness for a devastating disease one that has claimed so many of our children and young people. We hope that you will join us in our efforts to improve the quality of life for those afflicted with and by this complicated disorder.  NO family should have to bury a child.

Just because someone has epilepsy it does NOT define who they are as individuals, that disability is not inability and that they are NOT disabled but are differently –ABLED. 

Robert’s Sister:  Please tell us how we can contact and support your organization.     

Susan J. Noble

Founder/President

The Epilepsy Warriors Foundation SWFL

P.O. Box 07286

Fort Myers, FL 33919

239-233-2205

info@epilepsywarriors.org

www.epilepsywarriors.org

Robert’s Sister:

Many thanks to Susan who works tirelessly to help families who have lost a child to epilepsy. Her passion is inspiring and it is not an overstatement to say she is one dynamic woman who is changing the world.

Thank you, Susan!

10 Tips for Caregivers Caring for those with Epilepsy

November is both Epilepsy Awareness Month and National Caregivers Month and since I like to multi-task, I thought this would be a good day to bring the two “awareness” months together.

 

Robert and his helmet

My good friend Denise Brown of Caregiving.com is publishing “10 Tips for Caregivers” each day in November and my contribution of tips is for those caregivers caring for someone with epilepsy. (A friend of mine and I also wrote 10 Tips for Caregivers While Traveling which will be posted here and on Caregiving.com on Friday.)

This is going to sound crazy but I am stumped.  Call it writer’s block or a brain freeze or the effects of it getting dark at 5:00 p.m. I am staring at a computer and have no idea what tips to give someone who is caring for someone with epilepsy.

Maybe it’s because epilepsy is normal to me. Robert has had epilepsy his entire life so seizures have never scared me but I know they can be scary.  Now that Robert lives with me and Richard, I think I have to take it back that seizures are not scary. What scares me now is Robert’s long seizures (in his case, three to five minutes).  His chest heaves as his breathing becomes labored, his hands twitch or tug at his clothes, he is unresponsive and the stop watch on my phone keeps racking up the seconds. The minutes. More minutes. 

Okay, yeah, seizures can be scary.

Some of these 10 caregiving tips will focus on what to do when a person is having a seizure. 

1. Don’t panic. Reassure others in the area and explain what is happening.  Robert’s seizures are called Complex Partial Seizures and they usually last 10 – 20 seconds. If you don’t know what to watch for, the seizure could easily be missed.  During his last hospital stay, a nurse was helping him get dressed on discharge day. I was talking with the doctor but out of the corner of my eye I could tell the nurse was trying to get Robert to respond and he wasn’t answering her. I took one look at his head dropped down and to the right and his limp body and explained to her he was having a seizure. By the time I finished explaining this to her, he was awake and joking around with her. She looked surprised but I like to think she learned a little bit more about epilepsy that day.
2. Keep the area clear. This is both during a seizure and in the general living area. When living independently, Robert has fallen on a lamp (which was on) during a seizure. As a guest in my small apartment many years ago, he fell on a glass tabletop.  Through the years, he has hit the floor or sidewalk, dented walls with his head, fallen into coffee tables or tables and fallen against toilets so hard, he broke them.  Robert lives with us now and is constantly supervised so it is no longer possible for him to fall on a lamp and sustain 3^rd degree burns. His pathway is clear in case he has a seizure while walking and I keep him clear of glass or windows.
3. Time the seizure. Even though Robert’s seizures usually last 10 – 20 seconds, I like to time them. If his seizure hits five minutes, I have medication to give him to stop the seizure. I have both Ativan and Diazepam – although I’ve only used Ativan for him so far.
4. When to call the paramedics. It isn’t necessary to call 911 every time a seizure hits but if you are familiar with the seizures and a particular seizure is lasting longer than normal (and especially if they are longer than five minutes) or if the person has been injured or cannot breathe, call for help.
5. Do not put anything into the person’s mouth. This is extremely important and also a good time to dispel the myth that people having a seizure can swallow their tongue. No they cannot. Not too long ago, I read a celebrity had helped someone with a seizure and they stuck a wallet in that person’s mouth so they wouldn’t swallow their tongue. I cannot believe this myth persists so help spread the word that it is not true.
6. Turn the person on their side.  If possible, turn the person on their side if they are on the floor (or have fallen) during a seizure. Move anything that might hurt the person out of the way.  Do not try to stop the person from moving.
7. Keep a seizure log. Keep track of the time of the seizure, the behavior of the person during the seizure as well as after the seizure, anything that immediately preceded the seizure (such as eating or showering). This is useful to give to the neurologist and to try to track any seizure “triggers.”  Robert has a seizure almost every morning while getting cleaned up for the day. Seizures are not usually predictable so it is comforting to know I can “prepare” for the morning seizure. Probably one of the worst things about seizures is not knowing when they will strike. If anything, the log will allow you to look back to see if there are patterns to the seizures.
8. Medical Equipment.  Robert wears a helmet which has saved him from many head injuries.  Unfortunately, he didn’t start wearing one when he should have (which was when he was a child and into young adulthood).  If balance is an issue, then a walker may become necessary.  I am holding off putting Robert into a wheelchair until absolutely necessary but we do use one when going on long excursions.
9. See a neurologist regularly. It’s important to see a neurologist so he or she can adjust medications if needed or to inform the patient and caregiver of any new medications or treatments that might be available to help reduce the seizures.
10. Educate yourself.  1 in 26 Americans will develop epilepsy in their lifetime. 3 million Americans and 65 million people worldwide have epilepsy. 50,000 people in the United States die from epilepsy related reasons. These are just a few of the facts about epilepsy. There are several wonderful advocacy and educational organizations with lots more information on epilepsy and seizures. CURE (Citizens United for Research in Epilepsy) is one such organization and I was fortunate enough to be able to interview them for Epilepsy Awareness Month. For more facts about epilepsy and ways to help, please read the interview and visit their website.

I hope these 10 tips for those caregivers caring for someone with epilepsy have been helpful. Please let me know your own tips and experience with seizures and epilepsy in the comment section below.

Oh, and do me a favor and educate one person this month about epilepsy. Just work it into a regular conversation and tell them one fact. Epilepsy research is sadly underfunded and the more people know about epilepsy and talk about it the more research dollars we can get and the less stigma there will be about epilepsy.

Thank you!

Epilepsy Awareness Month: Advocating for Awareness and Answers - Interview with CURE

November is Epilepsy Awareness Month! While I try to advocate and spread awareness and education year-round, it is always exciting to give a little extra effort in November.

Last year, we had 30 days of interviews with people affected by epilepsy. I was quite honored to highlight the stories of people living with epilepsy or those who lost a loved one to epilepsy or those advocating to spread awareness and education about epilepsy. If you have a chance, please read these amazing stories of hope and inspiration.

 

This year my focus is on advocacy organizations and I have several interviews lined up. Since taking over Robert’s care, I have become involved in the epilepsy community and it is amazing to me how many organizations there are to help those with epilepsy as well as their families and caregivers. November is also National Family Caregivers Month so this is a perfect storm for highlighting advocacy organizations.

Each of these organization offers something unique and special. Whether the organization raises millions of dollars for research or raises money to fund the purchase of a service dog or is there for support or to tell stories, these organizations have several things in common: their heart, their commitment and their desire to bring about change.

I am happy to showcase these organizations and appreciate their taking the time to be interviewed.

Today, I am absolutely thrilled to bring you an interview with Tracy Dixon-Salazar, PhD, an Associate Research Director of Citizens United for Research in Epilepsy (CURE).  I almost fainted when she agreed to the interview and I owe a special thank you to the phenomenal and generous Christy Shake for introducing me to Tracy and to Susan Axelrod for her support of the interview.

Now that I’ve recovered (without fainting, thank you very much), please meet Tracy:

Tracy has been a volunteer on the CURE Research Review Board since 2006 and joined CURE as a Research Manager in 2013. Tracy received her Ph.D. in Neurobiology from the University of California, San Diego where her dissertation focused on the role of immune molecules in normal brain development and plasticity.  She went on to do a post-doctoral fellowship where she identified genes that underlie epilepsy and studied their disease-causing function using induced stem cell and animal models. Tracy’s desire to get a Ph.D. was inspired by her daughter, Savannah, who suffers from Lennox-Gastaut Syndrome type epilepsy with no known cause. She is a staunch epilepsy advocate and has worked with numerous organizations to communicate epilepsy research to families and to instill the hope that by working together, one day we will find a cure for this devastating disorder.  As Associate Research Director, Tracy will use both her expertise as a researcher and her passion as a Mother of a child with epilepsy to further our mission of finding a cure for epilepsy.

Now, please join me in learning more about CURE.  

Robert’s Sister:  Tell us the name, mission and goals of your organization.  

Citizens United for Research in Epilepsy (CURE)

CURE, Citizens United for Research in Epilepsy is a nonprofit organization dedicated to finding a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease.

Robert’s Sister:  When was your organization founded and what was the catalyst for forming the organization?  

CURE, Citizens United for Research in Epilepsy, was founded in 1998 by parents of children with epilepsy who were frustrated with their inability to protect their children from the devastation of seizures and the side effects of medications. Unwilling to sit back and accept the debilitating effects of epilepsy, these parents joined forces to spearhead the search for a cure.

CURE’s mission is not only driven by the pressing need for scientific research and data, but by the painful struggle of families who suffer from epilepsy worldwide.

Robert’s Sister:  What do you see as the greatest need for epilepsy awareness or advocacy and how do you help fulfill that need? 

Lack of understanding of the prevalence and potential devastating effects of epilepsy is a major problem in our society today.  Because the public generally does not know what epilepsy is, and how life altering it can be for the many patients and families who have it, this leads to basic misconceptions about epilepsy in general as well as a significant lack of research dollars being spent to find a much needed cure.  CURE is working to change that!

Robert’s Sister:  What do you want people to know about epilepsy and the people you are working to help?

• Epilepsy, or more accurately, the Epilepsies, are a diverse group of neurological disorders characterized by recurrent seizures.
• 1 in 26 Americans will develop epilepsy in their lifetime.
• An estimated 3 million Americans and 65 million people worldwide currently live with epilepsy.
• Each year at least 200,000 people are diagnosed with epilepsy.
• In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
• Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's combined – yet receives fewer federal dollars per patient than each of these.
• It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.
• Sudden Unexpected Death in Epilepsy (SUDEP) accounts for 34% of all sudden deaths in children.
• 2.2 million Troops have served in the current Iraq and Afghanistan conflicts; it is estimated that 440,000 of these soldiers will experience traumatic brain injury (TBI) and more than 100,000 of these soldiers are expected to develop post-traumatic epilepsy (PTE).
• Epilepsy costs the United States approximately $15.5 billion each year. The indirect costs associated with uncontrolled seizures are seven times higher than that of the average for all chronic diseases.

Robert’s Sister:  What are some events your organization hosts in order to raise funds and awareness?

CURE fund research grants every year in our search for a cure. 

CURE also host numerous fundraising events to raise money for research.

CURE also just started this really neat new Seminar Series where we bring cutting-edge epilepsy research to Universities around the globe.

Robert’s Sister: Tell us about your successes!

Since its inception in 1998, CURE has raised more than $26 million to fund research and other initiatives that will lead the way to a cure for the epilepsies. CURE funds seed grants to young and established investigators to explore new areas and collect the data necessary to apply for further funding by the National Institutes of Health (NIH). To date, CURE has awarded 151 cutting-edge projects. CURE has advanced the search for a cure in so many ways, it’s hard to describe them all here. Check out this link to learn more.

Robert’s Sister:   How has epilepsy and your organization affected your life?

I remember the first seizure vividly. I awoke to the sound of choking coming from the room of my two-year-old daughter, Savannah. I entered to see her tiny little body jerking about violently in her bed. My husband and I didn’t recognize this as a seizure—we thought she was choking. I’ll never forget the words of the paramedic that night who said, “her airway is clear, but what you just described sounds just like a seizure.” That was our harsh induction into the world of epilepsy. Living in that world has been equally harsh.

Savannah’s seizures worsened despite treatment. By age three, she was having multiple types of seizure and had to wear a helmet. By age four, she began to have clusters of seizures that would last for hours unless drug intervention was used. By age five, she was seizing dozens of times a day, and delays in her development were becoming apparent. Savannah was diagnosed with Lennox-Gastaut Syndrome, a severe epilepsy with a poor prognosis. Despite dozens of tests though, no cause for Savannah’s seizures was ever found, and with no family history or precipitating event, we were mystified.

It has been devastating to watch what epilepsy has done to my child. With over 35,000 seizures in seventeen years, it has definitely left its mark. At twenty, Savannah is the developmental age of a five year old. Her face bears the scars from falls caused by seizures, and her heavy eyes tell of the medications she takes to “control” them. Due to these medications, she drools incessantly, is frequently constipated, has overgrown gums, staggers like a drunk, struggles to find words, and sports a not-so-feminine mustache. The first thing I do every morning before getting out of bed is place my hand on Savannah to see if she’s breathing. With frequent tonic-clonic seizures during sleep, I fear that one will claim her life, and one day she will be gone.

Because of her developmental delays, Savannah doesn’t fully realize how her life is different because of epilepsy. She has a childlike happiness, with an infectious giggle and the most loving soul I’ve ever met. But I know, and it torments me. She will forever be dependent on others for her well-being, and is prone to being taken advantage of by the dishonest. She must continue to take anticonvulsants despite side effects, because the alternative is much worse. She will continue to miss out and be excluded because of unrelenting seizures. And I will continue to live in fear of her death, but I expect that I will see it in my lifetime. What I want more than anything is a cure.

Sadly, there is no cure for Savannah. Perhaps, with maturity, she may stop seizing one day, but the damage is done. If only there had been something to help her in the beginning. My hope is that someday other children with epilepsy and their families won’t have to live the ordeal that we have, and so I’ve have chosen a career as a researcher.

During those early years of seizures and utter confusion, I began to read all I could about epilepsy. The papers I was reading were too advanced and I thought I needed to go to college to take some English classes. But, I soon learned that it wasn’t English I needed, but science. So I took my first science course and became completely enamored with the subject. I attended classes while my children were at school, and stayed up late to study.

Fifteen years later, I have a PhD in neurobiology and am an epilepsy researcher.

As both a mom and a scientist, I have a great respect for CURE. An organization that recognizes the ravage of epilepsy and takes an active role in the search for help, CURE has inspired hope among parents and dialogue among researchers about curing this exasperating disorder. CURE’s impact has, thus far, been significant, and I am honored to be a part of this group.

Update: About 18 months ago, things changed. We learned that Savannah had genetic mutations in numerous calcium channel genes and we knew from previous experience that calcium supplements made her seizures increase substantially. Therefore, her doctor wondered if using a calcium channel blocker might help her... and it did. For over two years Savannah would go into non-convulsive status epilepticus every 2-3 days and would require rectal diazepam to stop these non-stop seizures. In the last 18 months, Savannah has only needed emergency rectal medication 3 times. We are amazed! For the first time in more than 15 years, a medication is helping stop Savannah’s seizures. We are cautiously optimistic that our days of recurrent status epilepticus are behind us and we are hopeful that perhaps trying other types of calcium channel blockers will one day make her seizure-free. If you’re going to dream, dream big!

Robert’s Sister:  Please tell us what your involvement with your organization means to you.  Has this affected your own personal purpose? 

CURE, to me, is hope. I found CURE at a time my daughter had suffered over 18,000 seizures and failed 17 different treatments.  I had lost hope and felt utterly alone in our battle with epilepsy.  But then I met the mothers and fathers of CURE and my hope was renewed.  Here was a group of individuals, many who had children suffering from severe epilepsy as we were, who refused to give up without a fight.  They believe, as I do, that research is the key to helping patients with severe, unremitting seizures.  I began volunteering for CURE in 2006 and have never looked back!

Robert’s Sister:  Is there anything else you want us to know?

We are truly grateful for the awareness you are creating with your blog.  It is so needed!!  Thank you!!!

Also, 93 cents of every dollar raised at CURE goes directly to research.  I love that!

Robert’s Sister:  Please tell us how we can contact and support your organization.     

CURE

430 W Erie Suite 210

Chicago IL, 60654

312-255-1801

www.CUREepilepsy.org

info@CUREepilepsy.org

Please view our GET INVOLVED page for the many ways you can support CURE and epilepsy research!

Robert’s Sister: My extreme thanks for your time and for all that you do!

I am still in awe of Tracy for getting a PhD in order to do learn as much as possible about epilepsy and to help her daughter and others with epilepsy. Can this woman get a Mother of the Year award, please?

What Epilepsy Means to Me: Epilepsy Facts

It’s hard to believe Epilepsy Awareness Month is almost over.  I am so grateful to everyone who agreed to be interviewed this month about epilepsy and sharing so much of their lives with such candor and openness. 

I’d like to share some facts about epilepsy today and tomorrow I will share some epilepsy resources that I hope are helpful.

First the facts, Ma’am:

•             Almost 3 million people living in the United States and 65 million worldwide live with epilepsy. Source:  Epilepsy Foundation

•             500 new cases of epilepsy are diagnosed in the United States every day.  Source:  CURE: Citizens United for Research in Epilepsy

•             Epilepsy is the 4th most common neurological disorder behind migraine, Alzheimer’s Disease and Stroke.  Source: Epilepsy Foundation

•             Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.  (Yes, COMBINED!) Source: CURE: Citizens United for Research in Epilepsy

•             It is a MYTH that a person can swallow their tongue during a seizure.   Nothing should be placed in a person’s mouth during a seizure.  The best way to help a person having a seizure (if they are lying down) is to help keep them safe.  If possible, roll them over to their side and place something soft under their head.  Source: Epilepsy Foundation

•             Epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.  Source:  CURE: Citizens United for Research in Epilepsy

•             Epilepsy can develop at any age and can be a result of genetics, stroke, head injury and many other factors.  Source: Epilepsy Foundation

•             One study suggests 68% of people with poorly controlled epilepsy do not have personal friends.  Personal friendships help develop good self-esteem which reduces depression.   Source: Epilepsy Foundation

•             Mood disorders are related to epilepsy and can be a side effect of either the seizures or the anti-seizure medication.  Source: The Epilepsy Therapy Project

•             In over 40% percent of patients, seizures can’t be controlled with treatment which can lead to brain damage and death.  Source: Cure: Citizens United for Research in Epilepsy

•             In almost 70% of cases of epilepsy, no cause can be found.  So many conditions can cause epilepsy or are related to epilepsy that it’s difficult to track down the exact cause.  It can be caused by an abnormality in brain wiring, imbalance of brain chemistry, injury, poisoning, brain tumor, stroke, Alzheimer’s, cerebral palsy, or any combination of these (just to name a few).   Source: Epilepsy Foundation

•             Keeping a seizure diary can help someone with epilepsy and their neurologist figure out possible seizure triggers and what medications are or aren’t working.  Download a seizure diary at www.epilepsy.com.

If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.netand I’ll be happy to share your story at any time. After all, Epilepsy Awareness Month actually never ends! 
 
Tomorrow I will share epilepsy resources with you to finish this month of Epilepsy Awareness. 

Then, I’m going to say hi to my husband, pet my animals and go take a nap. 

What Epilepsy Means to Me: Christy Shake

Close to 3 million people in the United States and 50 million worldwide live with epilepsy and the effects of epilepsy reach more than just those who get the diagnosis. 

November is Epilepsy Awareness Month and we are meeting some of those people affected by epilepsy.

This month is about seeing how epilepsy has affected the lives of not only those living with epilepsy but the parents of children with epilepsy and the children growing up with a parent who has epilepsy. Epilepsy affects people who have a sibling with epilepsy.  Epilepsy has inspired people to start non-profit organizations and has affected those who are friends with someone with epilepsy or who have married into a family with someone diagnosed with epilepsy.

Christy and Calvin

Starting our series of interviews this month for Epilepsy Awareness is Christy Shake whose son, Calvin, has epilepsy.  I met Christy through her daily blog where she writes about her son.  It is honest, gut-wrenching, profound and deeply touching.  Writing about Calvin every day lets her readers see every emotion a parent could possibly experience. 

Robert’s Sister:    When was your loved one first diagnosed?

Calvin was diagnosed when he was two years old.

Robert’s Sister: Tell us about the process of getting the diagnosis.

Calvin had had two febrile seizures as the result of urinary tract infections. Then six months later on a flight home from Florida he vomited on the plane. I thought he was airsick. But at home it continued, though I thought it unusual that he wasn't crying. I was suspicious. Then he went into a grand mal seizure that landed us in the ER. His clusters of seizures continued and the doctors performed an emergency intubation without anesthesia and Calvin screamed in pain while we watched, helplessly, not knowing at the time what we should do or how we could advocate for our boy. Hours later they performed a short EEG and gave us the diagnosis, plus a prescription for Trileptal. The neurologist mistakenly gave Calvin twice the dose he required for his weight. We discovered the oversight and told the nurses. The neurologist ordered the dose to be cut in half, with no admission of fault. Calvin went nuts on the drug and we changed to Keppra a few days later.

Robert’s Sister:  How did you feel when your loved one was first diagnosed with epilepsy?

I didn't know what it meant, exactly. I thought it was a benign condition where you take a pill and everything is okay. I didn't know there would be years of suffering, heinous treatments and their side effects, I didn't know that seizures can be uncontrollable, I didn't know people died from epilepsy.

Robert’s Sister:  Did your family treat your loved one differently after the diagnosis?  If so, how so?

My husband and I worried more.  A lot more. But we didn't treat Calvin differently.

Robert’s Sister:  Did the kids at school treat your loved one differently because they had epilepsy?

Hard to tell. Calvin is such a different little kid because of his other neurological impairments. He cannot walk unassisted, can't talk and remains in diapers although he is eight years old. The kids in his mainstream class seem to embrace him.

Robert’s Sister:  What treatments has your loved one tried?  What has worked?  What hasn’t worked?

Calvin has been on Trileptal, Keppra, Depakote, Lamictal, Clonazepam, Zonegran, Clobazam, Banzel, Neurontin and Keppra again. He's tried the Ketogenic diet and the Low Glycemic Index Treatment. Clobazam and his second course of Keppra have worked the best though he still has seizures. The Ketogenic diet didn't make a dent. The Keppra makes him manic and dampens his appetite. He's been on as many as four antiepileptic drugs at once. Some have caused him to lose skills and be a zombie, others cause him to be completely hyperactive.

Robert’s Sister:  Do you think the medications affect how your loved one feels?

No doubt. Calvin can't tell us but I know the meds make him dizzy and cause headaches, nausea, lack of appetite, poor coordination, lethargy, sleep problems, hyperactivity. The list goes on and on and without a cure there is no end in sight.

 

Robert’s Sister:  Have you done any advocacy work (individually or with an organization)?  What made you want to be involved?

 

I write a daily blog to promote epilepsy advocacy: http://www.calvinsstory.com and I host a fundraiser every year benefiting the CURE foundation.

 

I HAD to get involved.

 

Robert’s Sister:  How has epilepsy affected your life?

 

Epilepsy has trumped all of the other neurological deficits that Calvin suffers from. The seizures and the drugs exacerbate all of the challenges and suffering that Calvin already endures. I worry constantly. I feel despair, frustration, exhaustion on a daily basis.

 

Robert’s Sister:  What is your favorite memory of your loved one?

 

Probably the first time I laid eyes on him in the NICU when he was six weeks early and less than a day old. I called his name, "Calvin," and he opened his eyes for the first time. But there are so many favorite memories of him, of him reaching milestones after years and years of effort, of his limitless hugs, his hearty laugh, his unconditional love.

 

Robert’s Sister:  Do you ever wish your loved one didn’t have epilepsy?

 

Of course. Always. Constantly. I think you'd be hard-pressed to meet anyone who didn't feel the same.

 

Robert’s Sister:  What do you want people to know about epilepsy?

 

That it kills more people than breast cancer, that it is not benign, that it lacks advocacy and critical funding, that there isn't a cure, that it's a life sentence for the vast majority who suffer from it because, even if meds control their seizures, they are still shackled to the side effects of those drugs.

 

Robert’s Sister:  Is there anything else you want to say?

 

I want to kick epilepsy's ass.

 

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business.

http://www.calvinsstory.com

http://www.calvinscure.com

Robert’s Sister:  Thank you, Christy!

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”   Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.