What Epilepsy Means to Me: Trish and her brother Robert

Family weekend continues so you knew it was coming: the interview with myself about Robert (and, yes, it was difficult to interview myself!).

Even though I talk a lot about epilepsy on this website and on my Facebook Robert’s Sister page, I thought it would be fun to answer the questions I’ve been asking everyone else.

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

Robert, the devilish little brother
 (and only one of us with curly hair)

Robert was diagnosed when he was five or six years old.  I don’t recall the process of the diagnosis but remember him saying he could see “cartoons in his head” in the colors of “blue, green and red.”   

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

I don’t remember much about it, actually.  I do remember my parents searching and searching for a cure.  When Robert was in the 3^rd for 4^th grade, they even took him to Switzerland to see a renowned neurosurgeon.  They were devastated when the doctor told them surgery was not an option for him.

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

I think my mom was a lot more nervous than usual because of Robert’s fall risk. As he grew up, his seizures changed from petit mal or absence seizures to Tonic-clonic (his seizures are labeled as Complex Partial now). Our worry when he was young was that he would get seriously hurt when having a seizure. Even though there was the extra worry about him falling, he didn’t start wearing a helmet until he was an adult (I’m not sure what we were thinking).  By then, he had had several concussions and developed a permanent bald spot on the top of his head from the numerous times he had to be stitched up. 

I always thought Robert would have a shorter life-span than my other brother and I because of all his accidents and falls. Robert has been injured so many times and has had so many close calls, I think it’s pretty amazing he’s still with us.

Mom always worried about Robert and even when he was an adult, the first thing Mom told Robert when she saw him was to sit down.  I hear myself telling him that now and wonder if Robert gets sick of hearing it. 

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

When Robert had Tonic-clonic seizures, he would often lose control of his bladder.  Kids can be pretty cruel so, yes, he was treated differently.  I have to say that Robert had such a winning personality (and adorable dimples) that he still had many friends and didn’t let the bullies affect him too much.  Even then, he wanted to educate his classmates and one time asked a school teacher if he could talk about epilepsy to the class. (The teacher let him do it).

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

Oh goodness.  Robert has intractable epilepsy which means he’s in the 30% of the epilepsy population who doesn’t have seizure control with medications or surgery.  He’s been on every medication there is, some with disastrous effects.  He's had two brain surgeries, tried the Vagus Nerve Stimulator and was in a study for the Deep Brain Stimulator.  I recently was told that the study group he was in actually had the active DBS and it was helping to control his seizures.  Unfortunately, he developed a life-threatening infection surrounding the device and he had to have it removed and had to be pulled from the study.  His neurologist thinks he benefited from it enough to consider it again.

He tried Vimpat a few years ago but it caused extreme balance and coordination problems for Robert. I insisted he be taken off of it as soon as this became apparent but I don’t think he ever fully recovered from this and now uses a walker to help keep him steady.

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

They definitely do. Some of the medications he’s tried have affected his mood and behavior (he went through severe depression, suicidal thoughts, aggression and inappropriate behavior when he was a teenager and young adult). 

I think the meds he’s on now slow his cognitive thinking and make him drowsy. I haven’t noticed any of behavior issues although he occasionally will have an angry outburst.  One of his neurologists thinks the slowness could be partially explained by his high levels of ammonia and valproic acid due to his long-term use of Depakote. He's on medication to try to control this problem.

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

Why, yes.  I run the Robert’s Sister website. J  I first started the website as a way to help others navigate caregiving issues such as finding assisted living facilities.  It has developed into a passion for raising awareness about epilepsy and advocating for Robert as well as other working caregivers. Robert has told me he feels his mission is to educate people about epilepsy and he does everywhere we go.  I think the website helps him fulfill his own mission on a broader scale.

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

Taking care of Robert and becoming passionate about advocacy has been the second most fulfilling thing I’ve done in my life. (The first being raising my kids and having a healthy, happy family.)

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

I remember Robert has an energetic child with chubby cheeks and deep dimples.  The picture I’ve included here shows that exuberance.  I also remember him getting lost everywhere we went!  If his name wasn’t called over the loud speaker at the mall (or the grocery store or the pharmacy), then he wasn’t with us.

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

Yes, I definitely do wish he didn’t have epilepsy.  On the other hand, I look at Robert and realize he’s a happy guy.  He lives in the moment and is happy with simple pleasures such as his word search puzzles, watching Jeopardy or playing cards (his latest love is Double Chocolate Chip Frappucinos from Starbucks). Give him a cheeseburger and Rocky Road ice cream and he’s happy.  He tells jokes from the time he wakes up in the morning until he goes to bed at night and loves to make people laugh.  I’m not sure many of us are actually that content.   

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

Epilepsy is extremely prevalent yet the research dollars spent pale in comparison to other less common disorders.  We need to make sure people feel safe and comfortable enough so they are not afraid to admit they have epilepsy and make sure people do not fear those with epilepsy. 

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

I think I must have been crazy to take on running one interview a day during Epilepsy Awareness Month!  I actually have four days without an interview (this is a very busy time of year for people) so please contact me if you’re interested in telling your story!

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

I’d love to connect on Facebook on my Robert’s Sister page or Twitter at @robertssister1. 

For caregivers of any kind, I highly recommend www.caregiving.com.  It is a wonderful, supportive environment and I have met some amazing people through that website. I also am a huge supporter of Assisted Living Directory and have had the pleasure of writing for their website.  The Caregiver's Survival Network is another great resource for caregivers.

 

Of course, I'd love for you to come back to visit my website for more interviews and information about epilepsy and other advocacy efforts!  Email me at robertssister@att.net if you’d like to be interviewed too!

What Epilepsy Means to Me: Rachel and Uncle Robert

I'm continuing with our Thanksgiving “family” theme and today talk with my daughter about her Uncle Robert.

We had a successful Black Friday shopping trip (a few gifts, lots of laughs and giggles and more shoes than planned). We were even able to sleep after returning but I definitely still see a nap in my future.  

It was important to me to get my daughter’s perspective about Uncle Robert since she sees me care for him and she is around him when he comes over to visit.  Robert always enjoys seeing Rach but he sometimes mixes her name up with the daughter of his former companion or wishes her "good morning" several times, each time as if it was the first time he's seen her that day.  She's a good sport and tells him "good morning" each time and responds to whatever name he calls her.

(Curiously, Robert also sometimes calls my step-son, Chris, "Steve.")

Rach may not realize it but she (and my husband) are on alert and very responsive when Robert is over and especially when he has a seizure. Both have raced to my side to help when Robert falls (he wears a helmet to protect his head but we still do our best to catch him to make sure he doesn’t actually hit the ground).

Epilepsy doesn’t only affect the person with the diagnosis but the immediate family, extended family and friends and it takes all of us to care for and protect the one with epilepsy.

The more people know about epilepsy, the more epilepsy awareness and education spreads. The more common it becomes to talk about, perhaps that will translate into more research funding and also reduce the fear and stigma of epilepsy.

Rach is well-educated about seizures and epilepsy and can help spread awareness and education about both!  What I love best about this interview is that she sees the most important part of her uncle isn't his epilepsy but his positive attitude.

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

Rach and her Uncle Robert -
of course, he just cracked a joke

Robert was diagnosed when he was a child, before I was born. I’m not sure how the process went.

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

I never knew Robert before he was diagnosed with epilepsy. But I don’t think our family treated him differently.

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

I actually don’t know because I didn’t know Robert when he was in school. 

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

I know Robert has tried many different medications and, unfortunately, none have been able to completely stop the seizures. I know he also had a couple brain surgeries.

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

Robert is tired and groggy a lot of the time and I think that is probably due to the medications. But he is one of the most positive people I know, and I’m very glad the medications haven’t changed that part of him.

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

I haven’t personally but my mom and step-dad are involved with caregiving.com, as well as obviously this wonderful blog!

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

Robert now comes over every Sunday so in a way it has given me more time with my uncle instead of just on holidays and birthdays.

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

I can’t pick a favorite memory but I always love the jokes he cracks throughout the day when he comes over. He loves making people laugh!

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

Of course. But I never knew Robert before he was diagnosed so to me it is a part of who he is. As cliché as it sounds I think having epilepsy has made him a stronger and more positive person.

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

I’m always surprised at how little people know about epilepsy. I think the best way to help our loved ones who have this disease is to spread awareness and educate others about it.

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

www.caregiving.com
www.robertssister.com

Robert’s Sister:  Thank you, Rach, for sharing your story of your Uncle Robert with us.

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.

Shh! Don’t tell! I Like to Shop on Black Friday

We’ll continue with the interviews with people affected by epilepsy for Epilepsy Awareness Month but I first want to come clean about something.  


We enjoy our silly moments!

I have to admit it: I like to shop on Black Friday.
Don’t hate me!

I am apparently in the minority since I keep hearing people talk about all those “crazy” people going out to shop on Black Friday (although there are quite a few of us out there).  I feel a little on the defensive so want to explain why my daughter and I have a tradition of shopping on Black Friday (and it’s not because we're ungrateful for what we have or greedy or ridiculously materialistic although we may have a shoe addiction do like shoes).   

I don't know what started the tradition other than maybe several years ago we thought it would be fun to shop in the dead of night. (It’s really the only time I can stay up past ten.)

Rach was in high school when we first started this night owl shopping.  She and I always love to shop together anyway so we thought this was an event made for us.  We bundled up in comfy, warm clothes, grabbed some coffee and off we went.  Over the years, shopping after the mashed potatoes, stuffing and pie have barely been put away has become a cherished tradition we both look forward to.

That and the new shoes.

I don't care about being first in line to buy a big TV (I personally think those people are nuts but don't want to judge).  I avoid big electronic stores and would never go anywhere near a Wal-Mart.  I have my standards!  

Our Black Friday shopping experience has included meeting a friendly woman shopping for her "rebel" daughter and asking Rach for perfume suggestions.  Last year we met another wonderful woman who dragged her husband out to the mall after they had a ceremony at the cemetery that morning honoring her father who had passed away the previous year on that date (a custom in her family).  We saved her place in line while she continued shopping and then she repaid the favor by letting us check out ahead of her. 

Later, when stopping for food, we met a man who was encouraging his son to go to UC Santa Cruz and asked Rach about her college experience since she was wearing her UC Davis sweatshirt.

We usually buy some modest things to give as gifts (and treat ourselves to new shoes or boots – naturally!).  We spend the day night together having a great time, laughing and being silly (more so than usual because we’re sleep deprived) and we always curse the lack of parking spots.

Last year, Rach and I decided to venture out early in the morning instead of the dead of night and my husband spent the day with Robert.  He loved that I entrusted Robert to him and Robert loved the guy time.  Rach and I had our usual amount of silliness and laughter and returned home to hide Christmas presents and to squeeze another pair of shoes in our closets – then take a nap.

Shopping on Black Friday is, for us (and most likely many others) more about another fun, family tradition and less about finding the best deal.  

But hands off those boots – I saw them first.

What Epilepsy Means to Me: Other Brother and Robert

Happy Thanksgiving to all of Robert’s Sister’s readers!  Thanksgiving is my most favorite holiday because it is all about family and, well – let’s be honest. It’s also because there’s pie. J

Thanksgiving is an appropriate day for this special interview. Rich, otherwise known here as “Other Brother” is the middle brother between me and Robert. Rich and I are 21 months apart and have always been close. I actually have a memory of him (or at least I created one) of him being brought home from the hospital and thinking he was my very own, live doll!  It was a dream come true!

Mom would tell me that she would find me in the crib with Rich many mornings, just playing and keeping him happy.

We stuck together through some difficult family moments (which you can read about in my first book, Forever a Caregiver) and I am forever grateful for his quiet strength during that time.

As close as we are, some of what Rich shares in this interview about Robert was a surprise to me.  Reading this brought me to tears which is apparently my normal state these days!

I’m absolutely delighted to introduce you to Other Brother.

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

A silly sibling moment. (l-r)
 Robert, Rich, Trish

I wasn’t involved in the process.  I think I was in the 6th or 7th grade, and Robert would have been in the 3rd or 4th grade.  He missed a lot of school that year due to all the doctor visits (including a trip to Switzerland).  He had to repeat that grade.

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

At first, he had a mild form of epilepsy.  He didn’t black out or lose his balance.  He would see pictures in the corners of his eyes.  He seemed normal to me (well, as normal as any nine year old boy could be) but all the adults were saying how serious this was.  His epilepsy progressively got worse, though, and he started having multiple seizures a day, even with all the medications he was on.  I soon realized that he would not have anything like a normal life, and I became very sad for him.

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

Initially, he wasn’t treated differently, other than our parents taking him to different doctors and hospitals trying to find a cure.  Later, as his seizures became more frequent and he would lose his balance, we became more protective of him.  When we were around, we tried to make sure he was in a safe place (such as sitting down) in case he had a seizure.  He couldn’t drive a car or swim.  However, our father wasn’t quite as protective as the rest of us and allowed Robert to do some things he shouldn’t have done, such as swim without supervision.

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

It was tough for Robert in middle and high school.  During this time, not only did Robert have to deal with his epilepsy, but our parents divorced during this time, and we wound up moving to a new state.  Robert was always very social, and it was usually easy for him to approach people and make friends.  But at the new middle school in the new state, Robert became depressed and had severe anger problems.

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

Robert has been on multiple, daily medications since his first diagnosis some 40 years ago.  The doctors periodically try new medications, but nothing has been able to fully control his seizures.  For most of his life, with the medications, the seizures are “only” a few times a day.  There have been times when he has gone several days without a seizure, and Robert would proudly declare how many days it has been since his last seizure.  Without the medications, Robert would have continuous seizures and would need to be confined to a hospital bed.  It is amazing that the medications have been able to do what they do.

Robert has tried various surgeries as well, but nothing has made a difference.

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

When he first started taking the medications, we noticed he became more moody.  As he reached his teenage years, he became more angry and depressed.  It was difficult to tell whether this was due to his medications or if it was just his personality.  Both of our parents had bad tempers, so it was hard to tell with Robert if it was the medications or if it was just something that ran in the family.

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

I haven’t done any advocacy work.  My sister does quite a bit, though.  She has an excellent blog! [Editor’s note: Thanks, bro!]

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

Epilepsy has not affected my life, but has severely affected Robert’s life.  He has not held a driver’s license.  He has never been able to get a job.  He did volunteer work for a while at a care facility for the elderly, but the organization made him stop because they were concerned about him injuring the residents.

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

Before he started having his symptoms, Robert was a real terror.  He was an extremely hyperactive young boy, and an annoying little brother.  Looking back, those are my favorite memories of him.

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

I’ve never told anyone this before, but from the time Robert was diagnosed with epilepsy, until I was in my mid-20’s or so, which was a period of about 15 years, every birthday wish I made, every wish I made upon a star, every wish I got from breaking the turkey’s wishbone, was a wish that Robert didn’t have epilepsy.  I eventually moved on to other wishes, but I still wish he could be cured tomorrow.

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

If you are reading this and you have epilepsy, please know that I have the utmost respect for you.  The challenges you face and overcome are nothing short of incredible.

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

Keep reading my sister’s blog!

Robert’s Sister:  Thank you, Rich, for sharing your story of Robert with us. I appreciate you sharing openly about growing up with Robert. You are an amazing brother – now, please pass the pie! 

And, how about taking another shot at that wishbone?  

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.