Epilepsy Awareness Month: Interview with Robert

 

In November 2012, I did several interviews with people for Epilepsy Awareness Month and Robert was one of those interviews.

I’m pretty tired tonight so instead of writing a whole new blog, I want to share that interview with you. I hope you enjoy reading it as much as I did! (The original post can be found here.)

Robert’s Sister:   How does it feel to have epilepsy?

I don’t want to have epilepsy.  I want it to stop completely.  That’s one of the main reasons why I had the brain surgeries. 

Robert’s Sister:  How did your family treat you when you were growing up?  

They treated me pretty good.  I tried every medication but nothing was ever able to stop me from having seizures.  They kept an eye on me.

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

I had a lot of nice friends when I was in high school.  A lot of them were handicapped also and we went to gym.  In the back room we were able to play pool and I even taught some of the guys how to play pool.  Some didn’t know how to play right so I taught them correctly.  They really liked it too and thanked me a lot for that too.   My classmates were nice to me and nice to each other.

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

It doesn’t hurt me any.  When I was younger, I was still having seizures at times before the brain surgery. I always controlled my mood.  I thank God for that.

Robert’s Sister:  How do you feel about having brain surgeries?  Do you think they helped? (Note: Robert has had two brain surgeries)

The brain surgeries did help a lot. The first one was January 4, 1990.  I remember I was awake during the brain surgery.  The surgery was ten hours long and I was awake and the doctor showed me 3 x 5 cards, back and forth.  He had me move my fingers and toes. 

Robert’s Sister:  What made you want to be involved in research studies?  (Note: Robert was involved in a research study for the Deep Brain Stimulator at UCSF as well as a variety of new medications)

To see if they would stop me from having seizures or not. 

Robert’s Sister:  How did it make you feel when Dad said he didn’t want you to participate in the research studies? (Note: Our dad didn’t like the idea of Robert participating in research studies)

I felt like Dad didn’t want to help me.  I believe I did the correct thing. 

Robert’s Sister:  How do you feel about living in a care facility?

It’s okay.  The people are nice there.

Robert’s Sister:  What is your favorite memory? 

I like to remember Mom.  I still remember her in my mind.  It’s too bad she had cancer in her stomach and passed away early.  (Our Mom passed away from liver cancer in 1999 when she was only 56 years old). 

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

Yes.  I remember when I was 15 I was at Dad’s house in Modesto.  Dad took me to a friend’s house and we went to the Jacuzzi for a while.  I told him I was going to do a couple of laps in the pool and went to the deep end.  A seizure hit and I fell in.  My friend saw me lying at the bottom of the pool and told my dad.  Dad dove in and he was still in his work clothes.  He dove in and pulled me out.  The paramedics had to start my heart again and the Lord told me it wasn’t my time to die yet and I was here for a reason.  

Robert’s Sister:  What do you think that reason was?

To help other people. 

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

Epilepsy is a seizure disorder. A person could have a seizure and fall down. They may injure themselves also.  I remember I cracked open my head 36 times in the past. (Note from Robert’s Sister: he wears a helmet now; probably about 35 times too late).

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

I thank God for saving me in everything so far. 

Robert’s Sister:  I have one last question and it’s a really hard one.  You better take an extra drink of your shake for this one.  Who is your favorite sister?  J

(Laughing) – You!  (More laughter)  No, George Washington!  Only joking!  (Still laughing)  You’re my favorite sister.  My only sister also. 

Robert’s Sister:  Many thanks to Robert for answering my questions!

 

 

Epilepsy Awareness Month: Surgical Options

Robert’s Epilepsy was considered uncontrolled, otherwise known as refractory or intractable. I always called it intractable but either is correct.

Epilepsy is classified as intractable after two anti-seizure medications fail. Robert’s seizures continued after several (and I mean several) anti-seizure medications and combinations of medications failed. This happens for approximately 30 percent of people living with Epilepsy!

Medications aren’t the only treatment option for Epilepsy though. There are several surgical options and Robert tried several of those as well. The Epilepsy Foundation has some good information about the different kinds of surgeries for Epilepsy so I won’t go into all of them.

I do want to tell you about the surgeries Robert had. Robert was willing to try anything to control his seizures – even surgery.

Shortly after Robert was diagnosed, Robert was about seven years old and our parents wanted him to see the best neurologist in the world. That seemed pretty far-fetched since, believe me, we did not have Kardashian money, but our parents did love us kids so I can’t really blame them for wanting the best for Robert.

They found a neurologist and was able to get an appointment. In Switzerland!

I always wondered who they had seen and while searching for photos after Robert died, Rich and I found a piece of paper with the neurologist’s name! How crazy is that?! That surgeon said he could not do surgery on Robert but I looked him up and it turns out he really was the best! He was chosen as “Neurosurgery’s Man of the Century” in 1999.

I need one of those shocked face emojis right about now.

Robert didn’t have surgery when he was seven years old but he did have two Brain Resections in his twenties. They helped some in that he no longer had Tonic Clonic seizures but he did still have seizures.

Robert also participated in a trial for the Vagus Nerve Stimulator and then the Deep Brain Stimulator.

2021 DBS Surgery

Once the Deep Brain Stimulator was approved by the FDA to treat Epilepsy, Robert had that implanted. It had shown promise when he was in the study so we had hope it would help him. Robert had the DBS implanted in 2021 and, if I understand it correctly, it works better and better over time. That seemed to be the case for Robert as we thought his seizures were decreasing! His wonderful neurologist and I were very hopeful for the future! (Unfortunately this last visit to the neurologist was three days before Robert died.)  

Our hope was that Robert could reduce or eliminate some of his anti-seizure medications since all the side-effects of the medications are just awful. For Robert, the worst was the Depakote! That was brutal on his liver and he was consistently living with high ammonia levels making him pretty drowsy.

While Robert’s surgeries weren’t a miracle cure for him, they can help and they did help him. I personally know (okay, I know her through social media) at least one young lady who had a major surgery for her Epilepsy and it stopped her seizures. She’s been seizure free for many years now. When that happens, it is a miracle!

And, as you know, we are all about miracles around here!

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: Living Life

Life with Epilepsy is not just about seizures, doctor appointments and medications. People with Epilepsy – even with uncontrolled seizures – live their lives! They hang out with friends, go to family events, ride horses, travel, and volunteer. 

They bowl, golf, get married, write poetry, watch baseball and tell jokes. They graduate from high school and go to college. They join a church and become involved in bible study. They do their shopping and cook dinner. 

Epilepsy doesn’t stop people from living life. 

The effects of uncontrolled seizures on a person is wide-ranging, though, and can be devastating. Some may need round-the-clock care but they are able to give their mom the sweetest hug or a sly smile. Others live independently and some just need a modest amount of help. 

Robert lived a full life. He loved to travel with our dad and would remind me and Other Brother (and anyone else within earshot) that he had been to Hawaii five times. He went to Disneyland more times that and enjoyed trips to Las Vegas too! 

Robert made friends everywhere he went. He had friends at school, at church, at Day Program and at the Skilled Nursing Facility. There was something about Robert that everyone loved. Maybe it was the dimples and curly hair. Maybe it was his never-ending jokes about drinking whiskey and going to New York City and then laughing at his own absurd joke. Maybe it was because he was so darn polite! 

Robert had uncontrolled seizures his entire life yet did all the things I listed above. Except write poetry – I don’t think he did that. Oh and he watched football more than baseball. Plus, he was married but it was annulled after just a few days (turns out his “wife” wanted a honeymoon to Hawaii more than she wanted to be married). 

Robert definitely lived a full life. He lived a life with joy (although, don’t get me wrong, he could get pretty darn cranky and stubborn but we can talk about that another day). 

For now, let’s remember that there is so much more to a person with Epilepsy than just the disorder.