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. 

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

Epilepsy Awareness Month: Why the Decline?

Robert has had Epilepsy since he was a child and uncontrolled seizures his entire life but he wasn’t always in a wheelchair. He was an active kid (“hyperactive” was actually the label put on him). Robert had numerous seizures which made him fall but didn’t start wearing a helmet until his twenties. 

I don’t know why.

Looking back, the kid should have not only worn a helmet but been in bubble wrap.

Robert’s injuries were extensive: numerous concussions from falling on concrete, a broken shoulder due to a fall, a broken jaw at one point, and even severely burned his arm when he fell against a hot lamp bulb when he was alone. He miraculously survived a drowning when he had a seizure while swimming and I vaguely remember him getting hit by a car but the details are fuzzy on that one. 

I mean, seriously. We should have looked into the bubble wrap option. 

Robert was in his early forties and living with his companion, Judy, when we determined it was too unsafe for him to live alone. (Caregivers question themselves all the time about whether we should have stepped in earlier than we did. I am no exception but I stepped in when I did and, as my friend Kathy says, it was just the right time.)

Robert’s neighbor told Other Brother (Rich) and I that Robert was falling more than usual. There were some other things happening too and he ended up in the hospital and then a Skilled Nursing Facility for a while. That’s when we decided he couldn’t go back to his house and I took over his care. 

Robert was still walking at this point but eventually needed a walker because he wasn’t very steady on his feet. 

After he moved in with me and Richard, it was clear that Robert needed to wear briefs all the time. He couldn’t make it to the bathroom on time through no fault of his own. He didn’t move that fast but also his brain wasn’t telling him to get to the bathroom as quickly as it used to. 

The mobility decline snuck up on us until one day Robert couldn’t move his legs. He just couldn’t get them to move. He tried. I could really see him thinking about it but his legs (particularly the right one) wouldn’t budge. 

Robert landed in the hospital since this was such a dramatic change and he was there for a couple of weeks while they tried to figure out what was going on. 

The neurologists thought he possibly had Cervical Disc Disease with Myelopathy. Eventually, however, his wonderful neurologist that specializes in movement disorders said he had Parkinsonism (not Parkinson’s disease but, from a very basic understanding, it is just the movement disorder part of Parkinson’s). She put him on Sinemet which did help his movement. She also thought his decline could be due to CTE (Chronic Traumatic Encephalopathy) which is a degenerative brain disorder caused by repeated concussions. 

It can’t be definitively diagnosed, though, until an autopsy is done. 

Robert was always one to sign up for various studies whether it was for a new anti-seizure medication, surgery or medical device. He wanted to help others but also wanted his seizures to stop so he always signed up for trials. It kind of drove our dad crazy but he kept signing up for these things. Robert even tested the Deep Brain Stimulator before the FDA approved it for use in Epilepsy (it was actually first approved for use in Parkinson’s Disease). The DBS trial was showing that it helped reduce his seizures but, unfortunately, it became terribly infected and he had to have it removed. 

Several years later, once the DBS was officially approved, he was able to have it implanted again and it was definitely helping with his seizures. 

Given the suspicion of CTE and Robert’s willingness to participate in scientific trials it really was a no brainer (sorry, pun intended!) to have Robert’s brain autopsied after he died. 

I wasn’t sure how to go about this but I had read about Dr. Bennet Omalu who first discovered CTE in football players. I knew he had connections to UCDMC where Robert was hospitalized so after Robert died I looked up his website and contacted him. He responded within just a few hours and said his assistant would contact me. She did and, after talking to Richard and Rich we made the decision to have Dr. Omalu autopsy Robert’s brain. 

They made it super easy – they would get Robert from the hospital, retrieve his brain and then transport him to the funeral home. Initially, we chose a funeral home a few hours away because it is where our parents are buried but once we found out the cost of the burial (yikes!), we decided cremation would be the way to go and we could go with a funeral home in our area. Richard’s family had used the local option for many years and they were family owned so it was a easy choice. 

I let Dr. Omalu’s office know about the change only to find out Robert was already on his way to the original funeral home! There was some miscommunication with this funeral home who apparently had one department who knew we had declined their services but the message hadn’t made it to another department. Robert’s driver was literally ten minutes away before getting the message that he had to turn around and bring Robert back. 

Rich and I joked that Robert had a field trip to see our parents’ graves one last time. I’m certain he enjoyed it! 

The results of the autopsy won’t be available for several more months but it will be interesting to get the results. Did Robert have CTE or was his decline due to some other neurodegenerative disease? Or was it all because of the lifelong, uncontrolled seizures? 

I told his neurologists what we were doing and that I would send them the results. They were very grateful and told me how generous it was to do the autopsy.

I felt we really didn’t have any other choice. I wanted to honor Robert’s mission to educate others about Epilepsy and I wanted to find answers that might help others who have had years and years of uncontrolled seizures.  

I am grateful to Robert for this one last gift. 

Epilepsy Awareness Month: Continuing Epilepsy Education

It’s November so that means it is Epilepsy Awareness Month. In past years, I have shared facts about epilepsy, interviewed people with epilepsy and spotlighted organizations that help people with epilepsy and their families. I have shared what life with epilepsy has been like for Robert. It was important to Robert to educate people about epilepsy and I wanted to help him fulfill that passion – that life goal of his. 

Robert is gone now. (That is still hard for me to believe.) As most of you know, Robert died on September 28. Not from seizures or Status Epilepticus or SUDEP (Sudden Unexpected Death from Epilepsy); not even from Aspiration Pneumonia which I thought for sure would be what did him in. (After all, that’s what the doctors told me in June when they were pressuring me to let them insert a feeding tube which I adamantly refused.)

No. It was none of that. 

It was Necrotizing Pancreatitis caused by gall stones of all things (which were found in June but treatment for that was not a high priority at the time because he was in such bad shape from aspirating after vomiting from the Pancreatitis.) 

Nothing related to Epilepsy.  

I suppose the argument could be made that the Pancreatitis was allowed to get so bad because somehow (maybe due to all the anti-seizure meds he was on) Robert rarely experienced pain. It was always so ironic to me since my husband, Richard, has dealt with extreme chronic pain since I met him and Robert never seemed to feel pain. I always wished that somehow their pain centers could balance each other out and Richard would feel less pain. (Although now that I write that down I certainly didn’t want Robert to experience more pain so my balancing out the pain centers idea kind of falls apart.)

Well, a quick google search actually says it is normal not to feel pain while on anti-seizure meds. This has just always been a theory of mine based on Robert’s experience through the years but apparently that is an actual side-effect of some of the medications.  

I’ve heard that Pancreatitis is extremely painful but Robert never complained about his stomach hurting. He didn’t act like he was in pain. He flinched a little in June when he was hospitalized and they pressed on his stomach but nothing after that. 

Robert casually mentioned at a doctor’s appointment the week before his last hospitalization that his head hurt but he was not acting in pain at all. Looking back, I suppose this could have been “referred pain” but this didn’t occur to me or anyone else. He was actually acting more alert than usual so there was no reason to suspect he was in pain or that anything was “off.” 

That last week he was alert, playing bingo and talking and laughing! I was actually feeling so good about how he was doing! Fewer seizures, less sleepiness – heck, his neurologist even reduced one of his meds and talked about eventually seeing Robert every six months instead of the usual every three month visits!  

This was all so promising! 

Obviously, though, there was a problem because four short days later he was in the ER with septic shock from this necrotizing pancreatitis! 

That’s why this was such a shock. 

As a caregiver, it is impossible to know what is going to come at you. You can say the same thing about dealing with epilepsy.  Medication side-effects, accidents, concussions, surgeries, and an eventual decline from all of it. It can be unpredictable, brutal and heart-wrenching. 

But there can be some really good days. Even good months and I am thrilled to look back on Robert’s last month and be able to say it really truly was super, amazing, excellent and great. 

I’m going to do my best to write something about Robert each day this month. Epilepsy is different for everyone but I hope some of this information will help others. I hope by talking about Robert’s experience it will help others with epilepsy and their caregivers. 

I hope to keep going with Robert’s goal of educating others about epilepsy. 

And I suspect it will keep Robert close to me and his friends, family and “fans.” After all, he did love to be the center of attention!