Epilepsy Awareness Month: Let’s Not Judge

It’s hard to believe there is still stigma surrounding Epilepsy, even today and in many cultures.  The myths surrounding Epilepsy are outlandish and absurd and could easily be ignored if they weren’t still perpetuated today, causing real harm to those with Epilepsy.

Robert experienced judgment from others because of his Epilepsy.

Robert senior picture

I shared a story at Robert’s Celebration of Life about him having seizures at school (middle school if I remember correctly) and kids making fun of him. I remember picking Robert up from school once because he had a seizure and had wet his pants. Robert would sometimes become incontinent with his seizures so I can only imagine the embarrassment he felt when it happened at school or other public place.

I don’t know if it was because of that instance or another time he had a seizure in class but Robert knew the kids were making fun of him. Robert didn’t let that moment of embarrassment deter him though. He asked the teacher if he could talk to the class about his Epilepsy and the seizures. Thank goodness that teacher said yes because it was so important to Robert. He told me that story multiple times and was so proud he was able to talk the kids who made fun of him. How brave of him to do that! As for me, I couldn’t talk in front of the class without turning bright red!  

People sometimes make fun of things they don’t understand. Sometimes people judge others when they don’t understand something. 

Goofing around

One time, our family was at a lunch when Other Brother Rich was in college in the Bay Area. It was a big deal that our brother went to Berkeley and visiting Rich was a treat for all of us. 

We were at a crowded café, nothing fancy so the tables were pretty close together. People were coming in and out and all the tables were full during the noon rush. Robert had a seizure during our lunch and fell to the floor. I actually never got used to seeing Robert have a seizure whether it was a Tonic Clonic or Focal Impaired seizure. It was difficult for me to see him like that. If I never got used to it, I’m sure others were uncomfortable, especially if they had never seen one before. 

That day, though, as Robert was having his seizure, I overheard one of the patrons on the way out the door say something to the effect that he was probably on drugs. 

Oh my gosh, that infuriated me. When I relive that in my head now I imagine following them out of the café and really giving them a piece of my mind. (Yes, the movie version of this scene in my head has me cornering them outside and screaming at them!) I am sure I didn’t do that but boy did I want to! 

(The things we think of after a situation is over! Or maybe that’s just me.)

Robert recovered that day. I probably didn’t scream at anyone and I’m sure we all finished our sandwiches and enjoyed hanging out with Other Brother. 

I think about this from time to time and really hope that the person who mistakenly thought Robert was a drug addict eventually learned about Epilepsy and regrets his comment. I don’t want him to beat himself up too much about it because maybe he just didn’t know. Maybe it looked scary to him (it was scary to me!) and he didn’t know how else to react. 

He also could have just been a jerk but I like to think the best of people. 

None of us knows everything about everything so we really shouldn’t judge ourselves for making stupid mistakes before we know better. 

It’s making sure we get to the “knowing better” point that’s important. 

So let’s know better and not judge when we see something that’s different or makes us uncomfortable. 

Trip to Santa Cruz

Epilepsy Awareness Month Day 2: Surgeries and Seizures

Robert has tried everything possible to control his seizures.  He is on a bucket full of medications (and tried just about all of them), he has been in studies for the Deep Brain Stimulator and Vagus Nerve Stimulator. 

He also had two brain surgeries in his twenties. 

In 1990, Robert had a “Left Parietal Lobe Heterotopia Removal” and in 1991 he had an “Inferior Parietal Lobectomy.”

I don’t know much about these surgeries and, frankly, wasn’t involved in Robert’s care during this time. Robert lived independently in the same town as our parents and I was an hour and a half away with a young child. I visited with Robert on the holidays and called to check in on occasion. 

I recall our dad being opposed to the surgeries and heard him say for years afterward that Robert shouldn’t have had them.  Dad thought they caused Robert to have cognitive decline but he also had a very illogical view of doctors in general.

In other words, Dad wasn’t the best person to give a review of the surgical outcomes.

Robert wanted the surgeries.  He wanted to stop his seizures.  As Robert describes in his video today, he was having Tonic Clonic seizures 30 – 36 times a month.  (Robert calls them Grand Mal in the video which is what this type used to be called.) Robert was frequently in the hospital due to falls and injuries from these seizures and, in my opinion, would not have survived as long as he has without the surgeries. 

Robert was an adult and it was his decision.  He went forward with both surgeries, in spite of not being supported by our dad.  It shows great courage to go forward with something as major as brain surgery (and not one, but two), without complete family support. 

Robert had the surgeries and his seizures actually did change.  He no longer has Tonic Clonic seizures but has Complex Partial seizures now.  The frequency varies but he still has a couple dozen or three (or four) a month.  His seizures over the past year or so have come in clusters so he might go three or four days without a seizure and then is besieged by an onslaught of six in a day. 

Even at age 49, Robert is still working with his epileptologist to find the magic combination of medications to stop his seizures.

It has taken me years to realize this but Robert is both courageous and full of hope.  In the video today, Robert talks about his seizures and the surgery he had in 1990.

Be sure to let us know if there are any questions you have about the information presented this month and if there is anything else you’d like to know about the impact epilepsy has had on Robert.  We will do a “question and answer” video later in the month and would love to include your questions! 

What Epilepsy Means to Me: Mandy Krzywonski from My Life as Mandy . . . with Epilepsy

Mandy is an amazing young woman. She is only 19 years old and, although her epilepsy diagnosis didn’t come until she was 13 years old, she has had seizures for as long as she remembers. Mandy’s seizures are uncontrolled by medication and the Vagus Nerve Stimulator but she is determined to help others. She started her own very successful blog and does numerous fundraising events for epilepsy. Mandy also creates hospital care packages to give to children in the hospital dealing with epilepsy and other neurological conditions.

Yep, she’s amazing and I’m thrilled to introduce you to this wonderful young woman. She isn't known as the "EpilepsyBlogger" for nothing! Mandy has a lot to share so we’re running her interview in two parts.  Check back tomorrow for part two. 

Robert’s Sister:   When were you first diagnosed with epilepsy?   Was it a lengthy process to get diagnosed?

Mandy, aka EpilepsyBlogger

I can remember having what my doctor is currently calling “discharge seizures” as young as 8 years old, but I truly thought they were a normal part of life.  I had my first large Tonic-clonic seizure when I was just turning 14 years old. Therefore, I was first “officially diagnosed” roughly at 13 years old. Thank God for my mother’s little health journal that she takes to all my appointments. Otherwise I wouldn’t have been able to answer this question right… Shoot – I might need to go edit some other interviews now!

12-13 years old was really a lot of testing, migraine medications, and roadblocks. I was seeing a low-grade neurologist who specialized in migraines only, and he was certain that migraines were what I was experiencing due to the colorful “auras” I have. After some testing, this doctor found a benign Pituitary gland tumor. Upon finding the tumor he washed his hands of me and sent me to a wonderful oncologist.

 

While seeing this oncologist, I experienced my very first handful of seizures. You name the type of seizure - I had it! It was very frightening for my family and me. The oncologist ran all the tests to make sure these seizures weren’t caused by hormones from my Pituitary, or one of the medications he had me on. And once the oncologist knew that these were probably due to epilepsy, he sent me to a somewhat decent neurologist.

 

We won’t talk about him because I didn’t see him for long and he was terrible. This neurologist ended up finally sending me to my final doctor – an Epileptologist, too! – whom I love and still see! It was a very long road to travel, but I am finally in good hands.

 

Robert’s Sister:  How did you feel when you were diagnosed?

 

I felt relieved! After all the pointless migraine medications I was forced to try, and the medications I had to take in attempt to shrink a benign tumor that was better off left alone, it felt good to know we were finally at the heart of the problem. I was a bit scared, but only because of the Tonic-clonic seizures. They have never been anything less than frightening, so it is completely understandable. The term “epilepsy” itself never scared me.

 

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

 

Yes, my family did treat me a bit differently. They were mostly relieved to know that we had figured out what I was suffering from, and relieved to know I was finally seeing a decent doctor. However, they were always nervous that a seizure might come. They were new to epilepsy at that time, and not as trained as they are now. I wasn’t allowed to go to my friends’ houses, or go to parties and whatnot. I had to be at home where they could see me or get to me. Grocery shopping started consisting of only one parent, so the other could be at home with me. It got very annoying. I don’t think I stepped foot outside of the house for a good six months!

 

I slept with my door cracked open. Actually, let me rephrase: My parents came and opened my door every night after I had fallen asleep. I would even wake up and close it, thinking they wouldn’t open it again. But, no matter what, I’d always wake up with an open door. Not sure why it bothered me so much other than the fact that it lets a lot of noise into my room that I can’t sleep with. Such as the washer and dryer going, television from downstairs, etc.

 

Who is someone that you feel played the biggest role in getting you through your struggle with Epilepsy?

 

I would have to say that is my high school art teacher, Mrs. Mila. She is one of the strongest women I know. She always knows exactly what to say to get you up off the ground and out of the dirt. She helped me paint away the pain, and calm myself. And remember, these are times when not even a dose of Xanax could calm me down.

 

When all the other teachers wouldn’t let me go to the nurse (I might add, even during a seizure), she prepared a place for me in her large supply closet where I could sleep if I were to get sick. If it wasn’t for those naps, I would probably be dead by now. I would just lay down with the blanket she brought me, and sleep until the bell rang.

 

I saw a whole different side of art in her room. A side I didn’t know existed. Art is no longer something you do to get a good grade, or something you do when you’re bored – it is my life. And I have to thank my Mrs. Mila for all the extra pushes she gave me. (Even when I wasn’t sure if I wanted it or not!)

 

There were even times when I wanted to paint, but I was so depressed or stressed that I couldn’t do it. And somehow, with her magical powers, Mrs. Mila taught me how to teach myself to paint again. I could go on forever about this beautiful woman. A best friend I will never forget.

 

Robert’s Sister:  Did the kids at school treat you differently because you had epilepsy? 

 

Heck yes, they did! My friends treated me the same, but all the others just took my situation as a large opportunity to crack jokes about someone. One day I had a (very small) seizure in the dance room. Nothing crazy, just a tiny complex partial seizure. I was very confused, mumbling, couldn’t see, etc. Nurse came to walk me to her office and life went on – or so I thought.

 

Kids must have cracked jokes for hours. My friends from dance told me all about it. And worse, they told the stories to others and made it a million times worse than it really was. When I got to school the next day, someone asked me if I had heard about the girl who had a seizure upstairs in the school and fell over the balcony. That, to me, sounds nothing like what really happened, does it?

 

Robert’s Sister:  What treatments have you tried?   What has worked?  What hasn’t worked? 

 

Oh, gosh! I wish I could tell you everything I have tried without making this interview more than a year long. But, to sum it all up, I have tried almost every AED [Editor’s note: AED = antiepilepsy drugs] with literally no success whatsoever. The ones that worked slightly cause me some major side effects involving my mood, weight, or skin, so I had to be taken off of them immediately. It was usually weight or mood, though. Trileptal, by far, has been the pill that worked the most. I have never gotten off of it and it’s been about 5 years. I also got a VNS implanted about three years ago. I truly thought it was working because my seizures seemed to have slowed down a bit. And then, out of nowhere, seizures started firing up like crazy. I never really liked the VNS though. I loved it when it was first put in, but as the power got turned up all sorts of wrong started happening. It makes me “hum” in my sleep, causes my throat to tense up all by itself, and still causes discomfort even to this day.

 

Robert’s Sister:  Do you think the medications affect how you feel?

 

Yes, they most certainly do. I have had doctors say “Well, (INSERT DRUG NAME HERE) has not been known to affect mood. So you may want to see a Psychiatrist.” And we just want to laugh! My mother knows me best, and she will call a lie when she hears one. She’ll say, “I know my daughter, the daughter I knew before and after that pill are two extremely different people!”

 

I had one pill called Vimpat. My doctor claimed that depression isn’t extremely likely while taking it. Maybe I was on a high dosage, or maybe I am just sensitive to medication, but all I know is that I cried at least three times a week for no reason whatsoever while taking that pill for eight months. Terrible pill!

 

Zonegran was another one. Absolutely full of anxiety for a good six months of my life. Panic attacks, feelings that your emotions are just building up inside of you ready to “POP,” and depression that came and went. The doctors told me it was just “me.” So how do you explain that I feel perfectly normal now that I am off of that stupid drug? No anxiety medication needed?

 

AED’s definitely affect your feelings. Don’t let doctors tell you otherwise.

 

Robert’s Sister:  Thank you, Mandy, for sharing your life with epilepsy with us! We will continue talking with Mandy tomorrow and find out more about her advocacy work.