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!