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! 

When the Miracles Run Out

        Our family has been blessed with miracles for many years.

        Just looking at Robert’s run, he had a seizure while swimming when he was 16 years old and somehow survived after being in a coma for three days. He survived terrible falls (including one onto a lamp which burned his arm while he seized for god knows how long), concussions, an infection in the Deep Brain Stimulator when he was in a trial for it at UCSF, countless seizures and seizure clusters, two rounds of COVID pneumonia, a ridiculous amount of aspiration pneumonia, and, as recently as June, a severe case of pancreatitis brought on by gallstones.

Along with being the Bingo King he was the Comeback Kid.

Always pulling out a miracle.

When Richard had his own miracle of surviving a “widow maker” cardiac arrest, I started to feel a little guilty about our abundance of miracles. (Of course, if you know me, this comes as a surprise to absolutely no one.) I definitely got the guilt gene.

I loved the miracles though and was so grateful for each and every one. Logically, I knew that one day the miracles would run out. Robert has been so sick that doctors would pull me aside and solemnly tell me “I’m a little worried about him.” I told them that he always pulls through. I would worry too but would also allow myself to remember the miracles.

Robert always had one up his sleeve!

This last week, Robert seemed like himself. We went to his neurology appointment and his doctor and I talked about how amazing it was that the facility only reported one seizure last month! Yes, they could have missed some but they certainly weren’t missing 40+ a month like he was having when he lived with us just two years ago. Dr. Kennedy has worked with Robert for years, carefully adjusting his medications to see what might help without causing terrible side effects. He and I talked about how the Deep Brain Stimulator was helping along with the new medication Robert was on. Dr. Kennedy was even able to successfully slightly reduce some of the medications over the last several months, especially the ones that caused Robert’s ammonia level to skyrocket and make him sleepy.

Dr. Kennedy said eventually Robert could be moved from appointments every three months to six months! It was a great visit and it was not lost on me that this was Robert, again, being granted a miracle. The goal of zero seizures was no longer an impossible dream! It was within sight!

On Thursday, Robert enjoyed playing the card game of Kings in the Corner (his favorite). Pattae, his wonderful caregiver, shared that he won multiple times which was actually pretty typical.

Friday morning, though, I got a call that he was being sent to the Emergency Room. I was completely confused because I had seen him a couple times already that week and he was fine. Didn’t seem to be sick at all. I can usually tell when something is working on him but there was nothing.

    He was sent to the hospital unresponsive and by the time I got to the hospital, he was intubated and they were working to stabilize his blood pressure. They checked for a stroke, they checked to see if he was in status epilepticus, they ran so much bloodwork they ran out of good veins in his arms and had to use his leg.

    Robert quickly landed in the ICU, ended up with four “pressors” to get his blood pressure up and started with one broad spectrum antibiotic but ended up with four!

    He got so sick so quick. He was in septic shock.

    They finally figured out he again had pancreatitis. This time, it was “necrotizing pancreatitis” which in normal person’s lingo is “no bueno.”

    I followed along in his chart with the lab results and consulted Dr. Google or Chat GTP when I had a question. I looked up one of his liver enzymes which was in the thousands and was met with “you must have a typo.”

    Family and friends came up to see him, pray with him and say their goodbyes, just in case.

    Both nights he was in the ICU I was called to come to the hospital since things were not looking good. The second night, the doctor told me that he was not responding to the medications and his belly was swelling (surgery had been consulted and that was not an option because of how sick he was) and his organs were failing.

    Robert had remained mostly unresponsive the entire time and this was without sedatives. His body was just too tired to engage. I got one or two hand squeezes but not much more than that.

    We had to make the awful decision to remove his breathing tube.

    There was not going to be a miracle this time. Robert was not going to recover.

    I asked for the hospital pastor to pray with him before we did anything. I’m not really religious but Robert is and I wanted him to know he was going to heaven to see our parents and step-dad and Richard’s mom.

    Robert died quickly and peacefully with Richard and I by his side, holding his hands.

    I have spent today notifying service coordinators, his Day Program, the transportation company we use and others and gathering his belongings from his facility and seeing Pattae. With every phone call and text and every visit with the staff at the facility, we were met with tears and the same comments: We are heartbroken. Robert was special. Robert won over cranky residents. Robert will be deeply missed. Everyone loved Robert. Robert spread joy wherever he was.

    After hearing the same comments over and over, I realized Robert had one more miracle after all and that is all the hearts and souls he touched while he was here.

    Miss you, little brother.