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!

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. 

The Deep Brain Stimulator for Epilepsy

It was a whirlwind of activity after making the decision in May to move forward with the Deep Brain Stimulator (DBS) for Robert. 

Sure, we started thinking about it three years ago but once we made the decision this year it was a flurry of pre-op appointments, MRIs, more MRIs, CTs, surgeries, and post-op appointments. 

I didn’t expect as many pre-op appointments so consider yourself warned if you decide on the DBS. Robert also ended up having three MRIs which is two more than we planned for. Robert cannot lay flat on his back without pain (which I mentioned when making the appointment) but apparently that was interrupted as “oh, I’m sure he’ll be fine.” 

Well, no. That means he will not be able to lay still. Really. He was squirmy throughout the entire procedure which made it last even longer than it should have. It also didn’t give the neurosurgeon good enough pictures to map the DBS placement. 

We tried for MRI #2 (with sedation this time) but Robert fell at home the day of his appointment and was so weak I couldn’t get him in the car to get to the appointment. Through a herculean effort by the surgery and MRI schedulers, they got him in two days later. I arranged for a transport van so I wouldn’t have to count on Robert’s ability to get in and out of the car. 

They tried MRI #2 with a light sedative which didn’t work so they had to completely put him under. Finally, the MRI was done! 

Surgery was scheduled for the following Monday morning (again, we relied on a transport van and ended up using a couple of different transport services for all of Robert’s appointments and surgeries just to ensure we got to each one). As Robert was getting prepped for surgery the surgeon came in and said the MRI wasn’t done properly (the surgeon ordered three particular scans and only two of them were done). He couldn’t place the DBS without another MRI and he wasn’t sure if the MRI could be done that morning because of all the moving parts (holding a surgery room for post-MRI, getting the anesthesia team on board to put him under for the MRI, and figuring out if there was even an MRI machine available!). 

It's 6:00 a.m., it’s taken a huge effort to get Robert to this point and now we may not be able to do the surgery today? I wondered if this was a sign. Maybe we shouldn’t do the surgery after all. I stared dumbfounded at the surgeon. A few tears of frustration leaked out. He was very apologetic, the nurses said they never had seen this happen before, everyone said how the MRI team never makes these mistakes and it was unheard of to see this happen. 

I get it. Mistakes happen. The whole MRI situation was chaos anyway so maybe the techs were overworked that day trying to squeeze us in and just got sloppy. Whatever the reason, the end result was Robert had to get another MRI before he could get his surgery. 

The surgeon was impressively calm talking to me about the situation but I could tell he was on a mission. I don’t know what he did or how he did it (or if anyone got fired over this ordeal) but he made the MRI happen. Robert was rushed off to get an MRI with the plan to do the surgery immediately afterwards. When Robert was wheeled away, the surgeon told me he was not even sure the hospital would hold open the surgery room for as long as he needed but he was going to give it a shot. 

That was surgery number one. The MRI got done (properly), the surgery room was held open and Robert got part one done of the DBS implant. 

I am incredibly fortunate that none of this rattles Robert. He doesn’t worry, he just always goes with the flow with a smile for everyone no matter what is going on around him. 

Usually, patients are in the hospital for just one night after the first surgery. Robert stayed three nights due to chest congestion and his white blood count going up. I was worried about aspiration pneumonia and insisted he get put on antibiotics before it got out of control but the doctors wouldn’t do it. (I was so insistent that a nurse practitioner put him on them for a day before the doctor overrode her.) 

The DBS is implanted in two stages. The leads are placed in the brain during the first surgery and the battery is placed in the chest and hooked to the leads during the second surgery. 

The second surgery was much less eventful – oh, well, aside from the earthquake that happened during it. Apparently, we felt it in the waiting room, the nurses felt it during surgery but the surgeon didn’t notice it at all. Because, apparently, he has one setting: cool as a cucumber. 

The last piece of the DBS process is to have it activated. After Robert’s second surgery, we were sent home with a box containing everything needed to activate the device. The surgeon doesn’t activate it as that’s done in the neurologist’s office. The appointment should be within a week of the second surgery but ours was six weeks out. The surgeon was going to try to work some more magic and get us in sooner with Robert’s neurologist. 

Between the surgeon’s message, my calls and the luck of the neurologist not being called for jury duty, Robert was able to get an earlier appointment. 

DBS activation was on the books! 

My next post will be about activating the device but I also want to answer any questions you might have about the Deep Brain Stimulator. I’m not an expert, of course, but as a caregiver who has gone through this with my brother I can possibly address some concerns or questions you have if you are considering the DBS. 

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. 

What Having Epilepsy Means to Me: Robert

In September, the Talk About it Foundation held its first annual Talk About Epilepsy weekend.  Even though Sacramento wasn’t officially participating, I interviewed Robert and posted it as a Robert’s Sister “unofficial” way to participate. 

I’d like to share that interview with Robert with you during Epilepsy Awareness Month.

A few things to know about Robert: He is 47 years old and has lived with epilepsy and uncontrolled seizures his whole life.  He is slightly intellectually impaired but was able to graduate high school and even take a few Junior College classes. (I once saw "slight mental retardation" on his medical chart and flipped out because I thought that was an antiquated term and didn't think it belonged in his medical chart.)

The medications, seizures and falls have contributed to his cognitive and physical decline the last few years so he now uses a walker to get around and I make him sit most of the time (no standing around for Robert!). 

Our family has always accepted his epilepsy as just a normal part of our family.  Sometimes I just go about the daily routine of managing Robert's care without really finding out what he's thinking or feeling about it because it's been such a part of "normal" for us. 

So even though it may take a bribe of a chocolate shake or a couple of cookies to pry him away from Jeopardy, I always learn something new from Robert talking to him about epilepsy and his experience with it.

Robert with two of his favorite things: 7-Up
and a deck of cards

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!

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.

 

What Epilepsy Means to Me: Richard Kreis

When I was growing up, it didn’t occur to me that others may not know what epilepsy was.  Or that 50,000 people die from it each year.  Or that nearly three million people in the United States and 50 million people worldwide have epilepsy.

I did know that in over 30% of people with epilepsy, seizures cannot be controlled with treatment. I knew this because Robert was (and still is) in this group.

Our family knew what it meant to live with someone who had epilepsy and who was trying all kinds of different medications to control the seizures.  Not every family knows what this is like but I have been fortunate that when the people in my life do find out, they are compassionate and accepting.

My husband’s family is no different. They had never known anyone (to my knowledge) who had epilepsy but they have embraced Robert as just one of the family.  Robert’s seizures have never startled them.   My mother-in-law always asks about Robert and engages him in conversation during family get-togethers.  She’s protective of him and, well, acts like a mom which he really eats up. 

My husband, Richard, enjoys having Robert over and watches football with him (or, more recently, the World Series – GO Giants!).  Richard also barbeques a cheeseburger or two for Robert and makes sure our freezer is stocked with Rocky Road ice cream. A sure-fire way to Robert’s heart!

The interview today is with Richard who tells us what it’s like to marry into a family where epilepsy and a gazillion medications and the possibility of someone falling on furniture or small children without warning are a way of life.   

Robert’s Sister:    When was your loved one first diagnosed?  Tell us about the process of getting the diagnosis. 

Richard and Robert enjoying pizza

Robert was diagnosed as a child long before I met him.  From what I understand, the process began slowly and over time has progressively gotten worse, with the worst being in the last several years.

Robert’s Sister:  How did you feel when Robert was first diagnosed with epilepsy?

 

Robert had epilepsy when we first met so my issue was I was very impressed with Robert for having such a positive attitude about life, even with epilepsy.  He’s probably the most positive person I know.

 

Robert’s Sister:  Did your family treat Robert differently after the diagnosis?  If so, how?  

 

Not that I know of.  We do have Robert do everything he can for himself which is pretty much everything other than showering at our house (which we don’t have downstairs).  Or cook – Robert has no stove or oven access.

 

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

 

This I’m not sure of.  I met Robert when he was in his early thirties.

 

Robert’s Sister:  What treatments has Robert tried?   What has worked?  What hasn’t worked? 

 

I know Robert has been a part of several medication studies, brain studies (one being at UC San Francisco) as well as being involved in an electrical device study [editor’s note: Deep Brain Stimulator] over the years.  All of which seemed to have their pros and cons but none worked one hundred percent.

 

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

 

I believe some of the medicines do make him tired and possibly a bit more out of it than he would be if he was not taking them.

 

Robert’s Sister:  Have you done any advocacy work (individually or with an organization)?  What made you want to be involved?

 

I am involved with www.caregiving.com who works more on trying to help caregivers than those with disabilities.

 

Robert’s Sister:   How has epilepsy affected your life?

 

Epilepsy and Robert have taught me that it’s not how some people think – that you can catch it or that it’s due to something Robert did or that because you have epilepsy your quality of life is less.  Robert lives a very good life and brings a lot to our family.  He is one of the most positive people I know and believes heavily in his religious beliefs.

 

Robert’s Sister:  What is your favorite memory of Robert? 

 

I have a lot of good memories but the main ones are where he shows his beliefs and positive attitude.

 

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

 

Sometimes I do and then, other times, I wonder if he woke up without epilepsy tomorrow would he still be as positive as he is now and would he be the same person he is now?

 

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

 

People with epilepsy can and do live a quality of life and we can learn from that and them.

 

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business. 

 

Caregiving.com (www.caregiving.com)

Robert’s Sister (www.robertssister.com) [Editor’s note: hey, thanks, hon!]
Epilepsy Foundation (www.epilepsyfoundation.org)
Epilepsy Association (www.epilepsyinfo.org)

Robert’s Sister:  Thank you, Richard/honey, for sharing your epilepsy story!

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.     

Neurology Appointment: The Good, The Bad, The Ugly

The Good:  For years, Robert was treated for his epilepsy at UCSF which has a prestigious epilepsy center.  Robert tried out the Vegus Nerve Stimulator, participated in a study for the Deep Brain Stimulator study as well as underwent two brain surgeries by world-renowned surgeons.  He really has received the best care by the brightest researchers in the field of epilepsy. 

Even though Robert’s seizures continue to be uncontrolled, his seizures changed from Tonic Clonic (formerly known as Grand Mal) to Complex Partial.  The doctors at UCSF developed a regimen of medication for him which allows him to still enjoy daily activities and to have some independence.  Robert had improved seizure control with the Deep Brain Stimulator until he developed a life-threatening infection which meant he had to have the hardware removed from his brain and chest and withdraw from the study.  

When I took over his care, I grappled with the decision of keeping him at UCSF (which is a couple of hours from where we live) or switch him to the local UC epilepsy center which also has a stellar reputation.   I chose to switch him to the local UC Neurology clinic and hit the jackpot.  It turns out Robert’s new neurologist did her fellowship at UCSF and remembered Robert! 

This was such a special find because here was someone who knew Robert before his steep decline of the past few years.  She would understand how much his mobility and cognition had changed.  Any hesitation I had about switching Robert from UCSF was gone once I found out she used to be involved in his care.  I had high hopes he would get great, personal care. 

She did not disappoint.

At his most recent neurology appointment, the neurologist did the usual battery of tests, listened to my concerns about the increased weakness on his right side and the dragging of his right foot when he walks. She confirmed he showed increased weakness on the right side and attributed it to his recent bout of pneumonia and sepsis.   It’s fantastic to be validated and not have the doctor think I’m a crazy, over-protective sister.

Oh, wait – I suppose she could still think that. . .

Robert was put through a battery of tests:   Remember three words: Apple, Table, Penny (Robert remembered only Table); Write numbers in this circle so it creates a clock (Robert got up to the number 20 before stopping and staring at the page for a long time, something telling him something wasn’t quite right);  What city/state/country is it? (he answered “California” for most of these questions).  

He was asked to write a sentence and painstakingly wrote out, “God loves you.” 

He wrote that same sentence for his memory specialist too and it’s always fun to see the look on their faces when they read his sentence.  They don’t really know what to make of it but always say, “Thank you.”

The Bad.  Robert’s neurologist is leaving the clinic!  Ugh!  I’m sure she has a wonderful opportunity ahead of her because she is extraordinarily smart and really knows her stuff.  I certainly wish her the best but the selfishness in me wishes Robert could follow her wherever she’s going.  She was so sweet with her goodbye and said Robert really has a special place in her heart and told me about the other epilepsy specialist Robert could start seeing.  I have to consider what’s best for Robert and ask Robert what he’d like to do (maybe going back to UCSF is an option) but this was a real disappointment.  We are going to be sorry to see her go but I am excited for whatever she is going to do.

The Ugly.  Of course, this involves New Home.  I have always told New Home that I will take Robert to his neurology appointments, there is no need for anyone else to attend and I will update them on what happens.  For whatever reason, they decided this time the House Manager should go.  They weren’t even going to tell me – the only reason I found out is that I had been asking for Robert’s seizure log for a week and hadn’t yet received it.  I was told I would get it when House Manager came to the appointment. This wasn’t House Manager’s call (I actually think she does a terrific job) but came from “higher up.”  I spent an hour first talking to the House Manager, then her supervisor (who only could tell me they “prefer” to do it this way without really knowing why) and finally talking with her supervisor.  Thankfully, this person was reasonable (although she was standing her ground for most of the conversation).  I eventually convinced her we had been operating this way since Robert moved in!  She relented on the directive and I was able to go to the appointment without a babysitter (although sans seizure log). 

I also found out that the neurologist had written an order for non-generic drugs for Robert and sent it to New Home’s pharmacy back in April.  For some reason, New Home hasn’t been getting these scripts!  So frustrating!

More Good.  IOkay,  can’t leave on a sour note, so I will happily share that I was able to leave my Robert’s Sister flyers at the neurology clinic so others can easily have access to epilepsy facts and resources as well as Robert’s story. 

Bonus Good.  As far as what plan the neurologist has for Robert, she talked about new drugs coming on the market but agreed with me she’d like to try the non-generic medications he is already taking first.  She also said when the Deep Brain Stimulator is approved by the FDA, we should consider that for Robert again since it seemed to help him.  The previous infection as a result of the device was a fluke and may have had more to do with Robert’s living conditions than anything (this was right before I took over his care).

I am very pleased with the appointment and can forget about the trouble with New Home. Most importantly, I am hopeful for these treatment options.

Hope outweighs the bad and ugly any day!