Epilepsy Awareness Month: Loneliness and Friendships

We had a wonderful dinner with friends on the first day in Southern California for our Epilepsy Awareness Day trip. We can only see them a few times a year so our get-togethers are non-stop talking and laughing and warm hugs!  We planned to finally take a picture of the four of us but completely forgot with all the chatting, laughing and eating way more than we should!

This made me think of how social Robert always was. He had a wonderful group of friends in school, was active in his church as an adult and then, when he lived with us, had so many friends at his Day Program and eventually at his facility. He was very social his whole life.

But Epilepsy can be lonely and isolating. Stigma still exists and people can also be uncomfortable around seizures.  People with Epilepsy may feel embarrassed when they have a seizure in public leading them to hesitate to go out with friends and family.

Anti-seizure medications can also contribute to these feelings. They can alter a person’s mood or make them drowsy which affects if a person wants to socialize.

A logistical reason for loneliness is some people with Epilepsy cannot drive. Sure, it’s great to have ride-share options these days but that costs money so it’s not an option people can use all the time. Public transportation can be available but that doesn’t lend itself to a spontaneous visit with friends and options in rural areas can be limited.

So Epilepsy can be lonely.

The Epilepsy Awareness Day at Disneyland Expo is not only about education but about community. Seeing people walk into the event I can tell they feel like they have found their people. Attendees have hope for seizure control for themselves or their loved one and with so many hospitals attending and doctors giving seminars and non-profits sharing information, the options are plentiful (although a bit overwhelming).

Richard and I and one of our other co-authors, Gincy, brought our 365 Caregiving Tips books to the event and thanks to a sponsor, NorthShore Supply, were able to give away our “Caring for Yourself” book at a table generously paid for by Other Brother.

The individuals and families stopping by were all looking for answers and support and they found it at this expo. Their strollers, wheelchairs or bags were overflowing with pamphlets, books, and trinkets and flyers from all the vendors.

People attended with their support group or their significant other or the entire family. It was clear how much people cared for each other and how they all wanted the best for their loved one. So many visitors at our table shared their story of medication changes, surgeries, seizures, and their own feelings of overwhelm.

Yes, Epilepsy can make a person feel lonely but people with Epilepsy can also be resilient and compassionate and caring and have terrific support systems. Robert loved attending these expos and it was weird not having him there this year. He was always the greeter at our table and loved to talk to the visitors at the table and even the people walking by! He would just talk louder if people walked by without stopping to chat – he assumed they just didn’t hear him!

Robert was our social butterfly.

 

 

Epilepsy Awareness Month: Excited for EADDL

 

Richard and I are excited! We leave tomorrow for Epilepsy Awareness Day at Disneyland! We started going to this event in 2014 and Robert went with us. I remember being nervous about traveling with Robert but it was easier than I had feared (isn’t that always the way?) and we kept going back!

We couldn’t take him in 2023 because he was in the Skilled Nursing Facility and physically it would have been too tough for us. That was the year I had two cataract surgeries and two Mohs surgeries and I just didn’t have the energy it would take to care for him.

I really missed not bringing him that year. Last year only Other Brother attended the event because of that darn heart attack Richard had! (Although, frankly, I am relieved that if Richard had to have a heart attack he had it in front of an emergency room instead of in Disneyland!) Timing is everything.

This year we are going and we couldn’t be more excited. Our daughter, her husband and our grandson are going and Other Brother and his wife will be there too! Robert will be with us in spirit (and in photo form) so he can join us for our traditional photo in the Tea Cups!

I am grateful for the memories of visiting Disneyland so many times with Robert. He enjoyed every minute of it even though he always, always, always had seizures during the days in the park. Unfortunately, excitement was a reliable seizure trigger for Robert and it is pretty much impossible to keep someone from getting excited about Disneyland!

I wondered if taking him to Disneyland was worth the seizures. I was always considering Robert’s quality of life when I cared for him and even though the seizures were rough on him, I just couldn’t take that joy away from him.

We did our best to manage the excitement. The first year we went, we counted down the days on a chalkboard in his room. Two days before our flight was scheduled to leave, Robert ended up in the emergency room with a cluster of seizures that wouldn’t stop!

We never did the countdown to the trip again. In fact, Richard and I would be super low-key and casually mention we were going on a trip to Disneyland only when we were close to the departure date. We did our best not to show too much excitement when we entered the park but, I admit, that was tough.

Robert never ended up in the hospital again due to all the seizures (at least not around Disneyland time) and I have plenty of photos showing Robert smiling from ear to ear the whole time we were there.

I definitely think it was worth it.

Richard said today that going to Disneyland without Robert will be strange. Yes, it will be different and Robert will be missed but I am so happy we will have family there to enjoy it with us!

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: 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. 

The Deep Brain Stimulator for Epilepsy: Progress

The first time the Deep Brain Stimulator was activated, Robert’s seizures increased. 

No, that’s not supposed to happen. 

I deactivated the device but hoped we would be able to somehow, eventually, use all this new hardware in Robert’s body. The leads, the battery pack – everything he went through to get it cannot be for nothing. 

Robert’s neurologist sent me a message to come in at the end of August to try again. I was so happy that there was another way this device just might work! 

I had a management meeting at work in the morning and Robert’s appointment in the afternoon. My brain was getting a workout today! Good thing I had fresh memories of our beach vacation floating around in my head to keep the stress at bay. 

Dr. K, Robert’s epileptologist, came into the room as enthusiastic as ever. He clearly cares about his patients and is as disappointed when a treatment doesn’t work for Robert as we are. He will not be deterred, however! 

I sat with my list of questions and Robert sat with the box holding the Patient Programmer (basically, a phone with an app) and a wireless recharger (the part that goes over the battery pack in his chest). 

Dr. K explained that he talked with Stanford who conducted the DBS study that Robert had been in. The setting they used in the study was different than what Dr. K started with during the first activation. He was confident this different setting was going to have a better result. 

How will the setting be different? 

I am not a scientist but Dr. K was both patient and brilliant at explaining the process to me. I created a rudimentary illustration to show to my fellow non-scientists (apologies to any readers who are actually scientists!). 

Basically, the first setting had sections 1 and 2 activated. That created a constant electrical current in the brain but, for Robert, it was too much too soon and it caused him to have seizures. 

For this second try, only section 1 was activated. That allows for a more diffused electrical current which should be easier on Robert’s brain. We start at Setting A which is 2 milliamps in just that section 1 (in both leads). After two – four weeks I can increase it using the Patient Programmer and move the device to Setting B. That will deliver 3 milliamps – still in both leads but only in section 1. 

If all goes well, a month after Setting B is activated we can go to Setting C (4 milliamps). Dr. K says we can eventually get up to 7.5 milliamps but that there is no statistical difference in performance between 5 and 7.5 milliamps. 

I asked if we should leave it on longer this time if it does cause seizures again. Maybe Robert’s brain needs to get used to it? Dr. K said that might be a solution but also explained there were other settings he could try. He sounded very confident that we would be able to find a setting that worked for Robert. He said the amount of people that have an increase in seizures from the DBS is in the single digits. We just need to find the right setting for Robert. 

Photo of leads
(Credit: Medronic)

Once it was activated again, Dr. K asked Robert if he felt any tingling. Robert said he didn’t feel anything (that is not unusual but some people do have a sensation on one side of their body when it is activated. That’s nothing to be concerned about.). 

We talked about reducing his medications once we know it is working. Dr. K is very concerned about Robert continuing on the Depakote since it is affecting the ammonia levels in his liver so much (which causes confusion, sleepiness and mobility issues). 

If this DBS actually starts working I will be thrilled to start reducing the meds. Getting Robert to have more functionality and mobility not only helps him but us. It also would greatly help once we are no longer able to care for him (I have to think about these things). 

We left the office very hopeful (at least I did; Robert had long since fallen asleep while Dr. K and I talked about him). 

Robert had a couple of seizures over the next few days but nothing like when we first activated it. Eventually, they subsided. 

Was this working?? 

Not yet. Robert’s typical seizure cluster came pretty much on schedule (every 2 – 3 weeks) and his most recent one was a doozy. He had close to three dozen seizures in 25 minutes. Even his rescue med (Nayzilam) took longer to work than usual. 

Okay. The DBS at the lowest setting is not working. We didn’t really expect that setting to be the one that works but at least it didn’t cause more seizures. 

Three weeks after the initial re-activation and a week after the seizure cluster, I increased the device to Setting B. Robert did feel like he was being “tickled” once I increased the setting but it went away after a few minutes. 

The plan is to increase the device to Setting C in 3 – 4 weeks. If we see fewer seizures, that’s when we can start reducing his medications. I don’t want to get ahead of ourselves or jinx anything since we just got to Setting B but we are on our way! 

I hope this information helps you understand the Deep Brain Stimulator from a patient or caregiver perspective. As I mentioned, I am not a scientist or a medical professional but I am happy to answer any questions about this surgery and the whole process. 

Thank you for following Robert’s journey to, if not seizure freedom, at least seizure (and medication) reduction. I know a lot of people are rooting for this to be successful! 

Oh, and to everyone asking the most important question: Yes, of course, Robert got a chocolate shake after the activation by Dr. K and chocolate ice cream after the increase to Setting B! 

The Deep Brain Stimulator for Epilepsy: Take 2!

One of the questions asked about Robert getting the Deep Brain Stimulator was: what do we hope to get from it? 

While many may think the obvious answer is to reduce seizures the more complete answer is a bit more complicated. 

At this point in Robert’s life, the anti-seizure medications are what are causing so many problems. High ammonia levels (from Depakote) leading to reduced mobility and functionality and increased confusion. Vimpat literally making him lose his balance and his ability to walk (putting Robert on a very low dose has helped with seizures but any increase will negatively affect his mobility). 

Robert is on five different seizure medications along with a bunch of other meds to counter-act side-effects of those medications. He’s on so many a doctor seeing Robert in the hospital questioned him being on so many and said he’s never seen a patient on that many anti-seizure medications. The doctor clearly needs to spend more time in the neurology unit. 

(He tried to make changes to Robert’s medication regimen but anyone who knows me knows that didn’t happen.)

Our hope is that this DBS will control Robert’s seizures so we can reduce his medications and he can maybe even regain some of his functionality and mobility. 

That’s not asking too much, right? 

Robert went through the two surgeries and we were able to move up the appointment to get the DBS activated. (Thank goodness the neurologist was on standby for jury duty and could squeeze us in!) 

Time to activate this baby! 

At the appointment, Robert and I patiently awaited the neurologist. I reviewed my questions I had written down and Robert cracked jokes. 

I thought about how fascinating this device is, and, really, nothing short of a medical miracle. Leads go into the brain, hook up to a battery in the chest and it can be controlled with a phone and a hand-held programmer device that goes over the implanted battery to activate it. 

Robert has been very lucky with the quality of his epileptologists even though he’s had several of them. His current neurologist (Dr. K) is kind, smart and takes his time to explain everything. He knows we’re a team and he is as hopeful about this working for Robert as we are. 

Another neurologist came into the room with Dr. K and she introduced herself as a fellow. She was learning about the DBS which I didn’t mind at all. They are part of an award-winning teaching hospital and I am thrilled to have these talented doctors and students as part of Robert’s care team. 

Dr. K explained the DBS has three settings and delivers a constant electrical current. It starts out on setting A which delivers a low electrical current, then after a month (if it’s not yet controlling the seizures), the patient (or caregiver) can move it to setting B which delivers a little more of an electrical pulse. Setting C is the highest setting and that is where most patients end up but it takes three or four months to get there after the initial activation. 

Dr. K activated the device, showing me the different settings and explaining some side-effects to watch for (depression or tingling on one side of the body). He explained how to control the device at home and said I could increase it to setting B after one month if Robert seemed to be tolerating it okay. 

He said another MRI may be needed to be sure the electrodes are still placed correctly but he didn’t think that was necessary just yet. 

It seemed simple enough to activate and control. It’s basically an app on a phone so I was comfortable with it once I figured out how to open the app and he took me through the steps to control it. 

How will we know it is working? If Robert has fewer seizures, it is working! Simple as that. Robert’s seizures come in clusters every two to three weeks. If the clusters don’t come, it’s working. If his seizures come as frequently as usual, we move to setting B. We left the office feeling very hopeful. 

This is going to work! I just know it. 

The next day Robert had a seizure cluster. I brushed it off since he was “due” (his seizures are pretty regular so I didn’t find it unusual that he had any). 

The day after he didn’t have any. Phew! 

The day after that, he had another cluster. Then another the next day.  

He continued to have seizures almost daily for six days after the DBS was activated. 

This was not a side-effect anyone expected. 

I was in contact with Dr. K’s office and was told on the sixth day to turn it off. 

It was heartbreaking to deactivate it. Robert had gone through so much (heck, we all had) to be able to use this device and now it is causing him more seizures. Knowing he had the electronics in his head and chest and it was just sitting there, not being used, going through all the surgeries and MRIs and appointments . . . 

Heartbreaking. 

I turned it off but did so while hoping the seizures would continue. I’ve never wished for Robert to have seizures but just this once I wish they would continue. I was hoping the seizures were caused by something else and that it was just a weird coincidence they happened after the DBS was activated. 

No such luck. 

The seizures stopped. He’s had a few (his normal) since then but nothing like the daily clusters he was having while the DBS was on. 

We had planned a long weekend beach vacation for later in the month and made the most of it. It was what we all needed after such a stressful and disappointing process the last few months. 

On the last day of our vacation Dr. K messaged me and asked if we wanted to try again with a different setting. Yes! I am hopeful there is a setting that Robert’s brain can tolerate. Maybe there’s a setting below A that we can start with instead. Maybe we need to leave it on longer than a week and let his brain adjust. Maybe we need another MRI to make sure everything is still located where it’s supposed to be. 

Maybe there is still a chance for this DBS to work for Robert. 

Today we go in to try again. I have more questions. Robert will have more jokes. We know we have an army of people saying prayers, sending well wishes and hoping for the best for this second try. 

Hope and support are what we are hanging onto. 

Hail Mary

Robert will be getting the Deep Brain Stimulator (DBS) at the end of June. 

It feels like a full circle moment since at the time we started caring for him, he actually had a Deep Brain Stimulator already implanted. The DBS wasn’t yet approved by the FDA but he was in a study through the UCSF Epilepsy Center. Unfortunately, he developed an infection in the area where the stimulator part is implanted in the chest and it had to be removed. His infection was so severe that they also needed to do a separate surgery to remove the leads that are implanted in the brain and he couldn’t continue to participate in the study.  

It was disappointing but at least he survived the infection. (Robert has cheated death more times than I can even count.) 

Year after the device was removed I found out that Robert was in the part of the study with an active DBS and that it had helped reduce his seizures. The DBS was eventually approved by the FDA for treatment of severe epilepsy so his epileptologist suggested it as something to consider for Robert. 

We talked to the surgeon in 2018 and, because it was such a hectic year with my husband’s health issues (not to mention me having a stroke that year!), I put the DBS on hold.  

Robert continued to decline: he had frequent clusters of seizures, reactions to medications, hyper-ammonia from medications, worsening of mobility, functioning and memory (a result of a combination of seizures, medications and his neurodegenerative process). 

The doctors tried new medications; various doses of medications; weekly physical therapy. 

Richard and I tried a home caregiver (fantastic but she can’t help with Robert’s worsening physical mobility); we adjusted how we care for Robert (forget about daily baths or even street clothes); bought a new bath chair and a bedside commode. We learned tricks from the physical therapists on how to move him without hurting ourselves. We learned from the hospital nurses how to change him in bed when he was having a really bad day. We have a script for a hoyer lift. 

The doctors adjusted to the decline. We adjusted to the decline. Robert continued to say he was doing “super, amazing, excellent and great” and didn’t even seem to notice a decline. (Only rarely does he get frustrated with his inability to stand or transfer.)

Robert’s support team has a deep bench (as they say in football) and we made as many adjustments as we could but, at this point, we need a Hail Mary. 

I’m a huge fan of college football so I know a Hail Mary can work and it’s so exciting when it does. But that period when the ball leaves the quarterback’s hand and is sailing through the air and you don’t know if it’s going to be caught – that’s when you hold your breath and pray. 

Robert has prayed his entire life for his seizures to go away. 

Moving forward with the DBS is probably the last chance we will have to give him that. 

I personally don’t think it will completely take away his seizures but I do hope this device will give him better seizure control. My hope is that it will allow us to reduce Robert’s medications which would then help with his mental fogginess and, maybe - just maybe - even improve his mobility. 

That’s my hope. Maybe it’s more of a wish. It is probably as likely to happen as Robert’s prayers for zero seizures but I need to give him this chance. 

I need to try the Hail Mary.  

We will worry later about what comes next if this doesn’t work. 

For now, we have one more chance for a win. 

Time to hold our breath and pray. 

2018: Goodbye Awful, Hello Gratitude

I fully intended to write about the awfulness that was 2018.  For most of the year, I have been saying it has ranked high on the list of “worst years ever.”

After all, 2018 brought us Carol passing out in our dining room and smacking her head – lying unconscious for long enough that I was convinced she had died. 

Robert was hospitalized three times due to a variety of reasons: the flu (even after getting the shot), sepsis, pneumonia (twice before March), RSV (respiratory syncytial virus), and a week-long video EEG (which caused yet another bout of pneumonia).  He had his usual episodes of aspiration pneumonia which didn’t get severe enough to get him to the hospital but which knocks him out for at least a week.  Oh, and the usual seizure clusters (at least twice a month) which almost seem like the least of the problems he had in 2018. 

Richard underwent four skin grafts on his never-healing wound and saw each one fail.  Even after spending many days in the hospital on aggressive antibiotics and wound care. 

And 2018 also brought me my own huge wake-up call: a stress-related stroke that left me with numbness in my thumb and face. 

I almost forgot!  2018 also decided it was a good year for me to get side-swiped by a semi which left me very shook up but, thankfully, unharmed.

At first glance, yes, 2018 was nothing short of awful and stressful and, most certainly, difficult. 

I was the most overwhelmed I have been in my ten years of caring for Robert last January when both he and Carol were in the hospital at the same time and Richard was still recovering from his first skin graft.  And that was the first month of the year – before the weight of the year really bore down on us!  

I had no idea we were just getting started with our “epic” year. 

So, yes, 2018 was just awful but as I was looking through my calendar and photos from the year, I realized it was something else: wonderful!  I was so focused on how stressful it was that I had minimized the beauty of it. 

While Carol and Robert were in the hospital early in the year, our son-in-law spent hours converting our bathroom tub into a walk-in shower. It is not only so much easier for both of them to get in and out of but it is absolutely gorgeous!   

My best friend married the love of her life and one of my other dear friends drove me the five and half hours to the beautiful ocean-side wedding so I could be there for Joelle!  Sarah and I made the trip in one day so we only missed one day of work but we had a blast surprising Joelle and she got us there and back safe and sound (even with me cringing in the passenger seat because of the ridiculous drop-offs on some of the “roads”).  Bonus: I got to see the ocean!!

Richard and I took a trip to Alaska – just the two of us!  It was so relaxing and so much fun to spend time together without having to worry about hospitals, seizures, medications or caregiving. We saw whales and seals and more bald eagles than I thought I would ever see in my life!  The trip fueled my soul and I could feel the stress washing away. 

We had a second wedding later in the year when my step-daughter was also married and which brought an opportunity for family (including the siblings) to be together.  Two weddings in 2018!

Our annual trip to Disneyland for Epilepsy Awareness Day brought a reunion of sorts with my co-authors.  It feels as if they are always by my side (which they are) but we rarely are able to see each other in person. Hugging them was just what I needed in 2018. 

2018 also led me to a writer’s conference which introduced me to people I probably would have never met if I hadn’t taken the step to attend.  (I’m actually not sure I would have pushed myself to attend if I hadn’t had a stroke.)  It was out of my comfort zone but it is possible this will lead to more exposure for our books and some wonderful opportunities (fingers crossed)! 

And I don’t want to jinx anything but my face and hand numbness seems to be lessoning in intensity!  With any luck, I am hoping it will go away completely. 

When my mom became sick almost 20 years ago and we knew she only had few months to live, our motto became “there is no time like the present.”  We visited the ocean, we welcomed visitors we hadn’t seen in years, we shopped; we shared recipes, watched movies and played games. If 2018 taught me anything, it was to remember that motto and to live like there is no time like the present – whether we are dying or not. I did not need a terminal illness to remember that lesson (although, apparently, I did need a somewhat dramatic kick in the pants.)

Most importantly, throughout the year, I had the incredible love and support of my family and friends.  I know many caregivers are not as lucky as I am and, unfortunately, have family who abandon them.  I am fortunate – no, I am blessed (and I know that word is overused but I have to use it) – to have a daughter who spends time with me and who makes me laugh; a husband who pushes himself through pain to help alleviate my caregiving load and loves me so much; friends who listen to me rant at any time; a son-in-law who, regardless of how busy he is, spends hours helping us with home projects; a beloved mother-in-law who is there for both Richard and I as much as we are there for her; extended family who make me laugh and help whenever we need it and a sibling who not only appreciates the care I give to our brother but who is extraordinarily generous (beyond – I mean, he gifted me with a new car for my birthday! Who does that?!?!).  He is not only extremely generous but also emotionally supportive (and even came through in a pinch when I needed someone to stay with Robert during wedding #2).  I am happy to report that he and Taz are now pretty much best friends. 

My year may have been overwhelming and over-the-top stressful but through it all there were always smiles (sometimes through the tears or after them).  2018 ended with gratitude and love and the realization that we came out alive but also with a hope for a quieter 2019.  

I’m all for lessons and challenges and don’t want to be selfish but a less eventful year would be a welcome relief. 

Here’s wishing all of you a happy, healthy and hopeful year!  May 2019 be excellent for all of us! 

Epilepsy Awareness Day at Disneyland

I am already thinking about Epilepsy Awareness Day at Disneyland 2018.  That’s what this event does to you – it inspires, educates, supports and leaves you feeling all gooey inside!

And that’s not just from the Mickey Mouse Rice Krispy chocolatey goodness treat that I had to have on Day 1.

This was the fourth year Richard and I took Robert to EADDL and the event gets better each year. Friends and family attend with us which makes my heart oh so happy! We meet new people who are affected by epilepsy in some way.  Families travel from England, Australia, Florida – you name it and I’ll bet that state or country was represented. (If it wasn’t this year, it most likely will be in the future.)

I know it is not always easy for families to travel to such an event but there was not one person complaining. It is not easy to travel with someone who is disabled and may need to go through an extra security screening at the airport. Or someone who might have a seizure (or be worried about having one) on the plane or at the event. Or someone who needs to organize a week’s worth of medication.

I worry that I won’t bring enough briefs or bed pads for Robert.  I worry that all the excitement will cause him to have seizure clusters (the last few years the event did cause seizure clusters but this year he only had a few sporadic, minor seizures).  I worry that it will rain (and we all know Robert melts in the rain). 

I worry that I am not getting the absolute best deal on the flight or the hotel. (I practically have a panic attack when making travel reservations because I am so fearful I am going to pay more than I should!)

My worries do not stop me from going but they do prod me to be very, very organized and prepared for any (and I mean any) contingency. 

What if Robert ends up in the hospital and we have to stay a few extra days? No problem: I bring a few extra days’ of medications (and have the nearest pharmacy and hospital listed on my itinerary).  What if Robert leaks through his brief at night? No problem: I bring enough pads to spread under and on top of him (thankfully, he’s a good sport about it).  What if pneumonia strikes again? No problem: I packed his at-home supply of antibiotics and his inhaler (and have his pulmonologist on my phone’s “favorites” list).

That’s what these families do: prepare, prepare and prepare and then take a leap of faith it will all work out.

And it does.

These families inspire me so much! I met many moms and dads with young kids with epilepsy; a grandmother traveling with her grandkids who have epilepsy; a single mom with her young adult son who has epilepsy; parents with adult children with epilepsy; friends attending with a friend who has epilepsy. 

We get to meet other families who have taken this leap of faith to attend and it leaves such a smile on our hearts that we cannot wait until next year.

I even met one young lady who was at California Adventure by herself who had epilepsy. She hadn’t heard about Epilepsy Awareness Day at Disneyland but tapped me on the arm, pointing at my t-shirt and said, “I should be a part of your group. I have . . .”  Epilepsy?  “Yes! I have epilepsy too.”

We stopped to talk with her for a few minutes and she said she had been seizure free since 7^th grade and was now in college. She was delightful and sweet and I told her about the event and suggested she attend next year. I introduced her to Robert and she told me about the medication she was on that allowed her to remain seizure-free. She suggested I talk to Robert’s doctor about it and I thanked her for the information.

If we hadn’t been wearing our Epilepsy Awareness Day shirts she may never have known how many people were just like her.  Of course, I worried about her being at the park alone because she had an innocence about her that I was afraid people may take advantage of.

I recognized that innocence because Robert has it too.

Our encounter was brief but she left an impression. 

That’s what this event does too.

This event brings people together and gets rid of the stigma that epilepsy still has associated with it.

So dust off your worries, start your planning and preparing and join us next year at the annual Epilepsy Awareness Day at Disneyland and Educational Expo. 

Mark your calendars for November 5, 6 and 7, 2018!!

Hope to see you there!

I better start my search for the best travel deals – it’s never too early!