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: The Seizures

I wanted to talk about the different kinds of seizures Robert has had throughout his life but then I started to review his seizure logs. I kept track of his seizures since I started caring for him so we could show his neurology team at Robert’s appointments.

Snapshot of Robert's seizure log

Before I started caring for Robert he would also keep a log which I have in a box around here somewhere.

The doctors loved the log since they were able to understand the sheer number of seizures Robert had and I loved it because I was trying to track down his seizure triggers. I even created a spreadsheet for weather stats but that proved to be too time-consuming.

 The spreadsheet included the time of the seizure, its duration and Robert’s behavior pre and post stages (prodromal and postictal) and during the actual seizure.

 Robert’s seizures were Focal Impaired Awareness (aka, Complex Partial) seizures. If he was standing, he would fall. If he was on the toilet or in a bath chair, he would sometimes lean over and fall if someone wasn’t there to catch him. Seizures in the bath chair were even more of a problem because he would move his head back and forth and lean to one side, sometimes making him slide down off the chair unless one of us could hold him up until the seizure ended.

Robert’s head always turned to the right during a seizure. This is why when he was unresponsive in June and had his head turned to the left and upward, I knew it wasn’t a seizure. I thought maybe he had a stroke but, as it turns out, it was due to his first bout of pancreatitis.

As a child, Robert would stare off into space. He described these seizures as being able to see cartoons in his head and the colors, “red, blue and green.” Teachers thought he wasn’t paying attention but he was having an absence seizure.

By the time he was a teen, he had Tonic Clonic seizures (aka, grand mal/convulsive) and lose control of his bladder. These are the seizures typically portrayed in movies but they are one of many, many kinds of seizures.

After Robert had his brain resections in his twenties, his seizures were the Focal Impaired Awareness (aka, Complex Partial) kind.

When I took over his care and he lived with me and Richard, these were the seizures he had. He was still walking so we had to make sure he wore his helmet when he was standing and I made him start wearing it even when sitting at a table since, once, he fell sideways onto the floor during a meal.

We were always trying to keep up with (and prevent) the numerous ways Robert could get hurt. The helmet definitely saved his head on numerous occasions.

Side note/rant: Robert was on Medicaid and the helmet was medically necessary. In fact, if he didn’t wear it he would end up in the hospital needing stitches! (And he did – he briefly lived in a facility and did not wear his helmet when walking around and had a seizure and cracked open his head! He required several stitches!)

Back to my rant: Obviously, not wearing a helmet was very costly. However, Medicaid always denied the purchase of a helmet. I found it so ridiculous they wouldn’t pay $400 for a fitted helmet yet would pay thousands of dollars for a head injury – stitches, CT scan, ER visit! We paid out of pocket for the helmet but I always worried about those that didn’t have the means to do so and the kids or adults who continued to sustain head injuries when a helmet could have prevented them.

It makes no sense and frustrates me no end.

Out of curiosity today I reviewed his seizure logs. I was curious how many seizures Robert had. Even though I kept these logs and counted the seizures monthly to see if they were waning or getting worse with medication changes I never thought to count how many he had in the time that I cared for him. Keep in mind, these logs are not completely accurate because I was not looking at Robert 24/7. Sometimes his seizures would only last 2 – 3 seconds so capturing all of them would be impossible.

Just because I counted.

Robert had clusters of seizures so some months he had dozens. Every year he had between 200 – 500 seizures. I logged over 3,000 seizures over a ten year period. Some people have fewer; some more.

This is why we continued to find the right medication and dose for Robert. This is why we had the Deep Brain Stimulator installed. This is why he had his brain resections.

Approximately 30 – 40% of people with epilepsy have uncontrolled seizures. Getting complete seizure control is something 1.5 million adults in the US are still striving for.

That is a grim statistic but supporting epilepsy research, sharing information about epilepsy, being involved in various organizations helping families dealing with epilepsy and even learning seizure first aid are all ways to support those with epilepsy.

Thank you for reading and for your support of Robert and our family through the years.

 

Robert in a postictal phase