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.

 

Epilepsy Facts and Resources

In support of the first annual Talk About It Epilepsy weekend, I’d like to share as many epilepsy facts and resources as possible.  This information can also be found as a downloadable document on the right side of this post. 

Epilepsy affects one in 26 people in their lifetime so chances are this flyer will come in handy for either you or someone you love or know. 

What is epilepsy exactly? 

·         Epilepsy is a disorder; not a disease.  A seizure can be described as an electrical storm in the brain.  Normal brain function limits the spread of electrical activity but a seizure happens when this breaks down and allows this electrical storm to spread in the brain.  A person is thought to have epilepsy when they have had at least two seizures.    Source: Multiple

·         Almost 3 million people living in the United States and 50 million worldwide live with epilepsy. Source:  Epilepsy Foundation

·         500 new cases of epilepsy are diagnosed in the United States every day.  Source:  CURE: Citizens United for Research in Epilepsy

·         Epilepsy is the 3rd most common neurological disorder behind Alzheimer’s Disease and Stroke.  Source: Epilepsy Foundation

·         Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.  (Yes, COMBINED!) Source: CURE: Citizens United for Research in Epilepsy

·         It is a MYTH that a person can swallow their tongue during a seizure.   Nothing should be placed in a person’s mouth during a seizure.  The best way to help a person having a seizure (if they are lying down) is to help keep them safe.  If possible, roll them over to their side and place something soft under their head.  Source: Epilepsy Foundation

·         Epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.  Source:  Centers for Disease Control & Prevention

·         Epilepsy can develop at any age and can be a result of genetics, stroke, head injury and many other factors.  Source: Epilepsy Foundation

·         One study suggests 68% of people with poorly controlled epilepsy do not have personal friends.  Personal friendships help develop good self-esteem which reduces depression.   Source: Epilepsy Foundation

·         Mood disorders are related to epilepsy and can be a side effect of either the seizures or the anti-seizure medication.  Source: The Epilepsy Therapy Project

·         In over 30% percent of patients, seizures can’t be controlled with treatment which can lead to brain damage and death.  Source: Cure: Citizens United for Research in Epilepsy

·         In almost 75% of cases of epilepsy, no cause can be found.  So many conditions can cause epilepsy or are related to epilepsy that it’s difficult to track down the exact cause.  It can be caused by an abnormality in brain wiring, imbalance of brain chemistry, injury, poisoning, brain tumor, stroke, Alzheimer’s, cerebral palsy, or any combination of these (just to name a few).   Source: Epilepsy Foundation

·         Keeping a seizure diary can help someone with epilepsy and their neurologist figure out possible seizure triggers and what medications are or aren’t working.  Download a seizure diary at www.epilepsy.com

EPILEPSY RESOURCES
 

The Epilepsy Foundation.   The Epilepsy Foundation is a great place to start in the search for information about epilepsy.  Their website includes information about epilepsy, seizures, research and much more.  The Epilepsy Foundation website has support communities for both those living with epilepsy and those caring for someone with epilepsy as well as information for educators and advocates. 

Epilepsy Therapy Project.  Another excellent resource!  Their mission is “to inform and empower patients and families facing newly diagnosed epilepsy or those struggling with epilepsy that has resisted treatment.”  They have information on innovative treatments and research as well as an online support group. 

Talk About It Organization.  Greg Grunberg  (he starred in the TV show Heroes) started the Talk About It Organization because his son has epilepsy.  In an introduction on the website, Greg proudly calls his son his hero.  This terrific website has many people you will likely recognize talking about epilepsy and different aspects of it, including first aid for seizures, employment, how to discuss epilepsy in your family as well as important information about epilepsy medication.  

CURE: Citizens United forResearch in Epilepsy.  Susan Axelrod (whose husband, David Axelrod, was a senior advisor to President Obama) started the CURE Epilepsy organization because their daughter has epilepsy.  This organization does a fantastic job spreading awareness and education and raising money for epilepsy research. 

National Association of Epilepsy Centers.  If researching treatment centers or epilepsy specialists, the National Association of Epilepsy Centers can help with the search.    

PAWS With a Cause.   I can’t leave out my “pet” organization!  PAWS With a Cause provides Service Dogs trained to deal with seizures as well as other medical conditions.

Purple DayOrganization.  Who doesn’t love purple?  According to their website, “Cassidy Megan created the idea of Purple Day in 2008, motivated by her own struggles with epilepsy. Cassidy's goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone. The Epilepsy Association of Nova Scotia came on board in 2008 to help develop Cassidy's idea which is now known as the Purple Day for epilepsy campaign.”

Many of these organizations also have their own Facebook pages providing additional information and most can also be found on Twitter.  Both provide wonderful opportunities to connect with others in a similar situation. These real connections will help combat that pesky troublemaker, isolation. 

Let’s Talk About It!

Robert: What Having Epilepsy Means to Me

September is interview month at Robert’s Sister, apparently. The Family Caregiver Series will continue after we break this weekend to Talk About It!

Talk About what?  What in the world are you Talking About, Trish (and why are capitalizing letters in the middle of the sentence??)?

Robert’s Sister is participating in the Talk About It Foundation’s  first annual Talk About Epilepsy weekend.

Posts this weekend will focus on epilepsy and we’re kicking off the weekend with an interview with Robert.  (Yes, I admit it! I bribed him with a chocolate shake).  Robert has answered reader’s questions before which focused on his seizures and can be read here and here, but this time, the questions come from his tough, older sister.

The purpose of this interview is more about a big sister taking a break from the day to day tasks of worrying about medications and care facilities and the supply of Rocky Road Ice Cream to get to know her little brother a little bit better.

A couple of sips of chocolate shake and Robert is ready!

Robert’s Sister:   How does it feel to have epilepsy?

Robert:  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? 

Robert:  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? 

Robert:  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?

Robert:  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)

Robert:  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)

Robert:  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)

Robert:  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?

Robert:  It’s okay.  The people are nice there.

Robert’s Sister:  What is your favorite memory? 

Robert:  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?

Robert:  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?

Robert:  To help other people. 

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

Robert:  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?

Robert:  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

Robert:  (Laughing) – You!  (More laughter)  No, George Washington!  Only joking!  (Still laughing)  You’re my favorite sister.  My only sister also.  (Robert's Sister: Now, I'm the one laughing!).

Many thanks to Robert for answering my questions!

If you have a comment or question for Robert, please leave it in the comment section below.  Tomorrow we will continue our participation in the Talk About It Epilepsy Weekend and will post epilepsy facts and resources.

Vacation!

Sheesh, after all the planning and prepping and packing and organizing, I need a vacation!

Oh, wait . . .

Can I come too?

Yay!  I am going on vacation! This isn’t going to be any vacation, either, but a vacation of a lifetime.  Both daughters graduated from college this year and have planned a trip to Europe as a celebration for years. 

Hubby and I are tagging along (partly due to a generous gift from Other Brother and partly because I’m having a difficult time coming to terms with the girls growing up!).  Yes, I plan to follow them around wherever they go throughout their life (shhh, don’t tell them my plan!).   

The vacation looks a little different for all of us (they left before we did and one daughter and her boyfriend are staying longer than the rest of us) but we meet up in Rome and will all be together for a few days touring the sites and drinking some wine and then will board a giant ship for a seven day cruise to France, Spain and other parts of Italy. 

I guess I should have paid attention in French class or taken Italian!  Well, let’s see, I know “Ciao” and “Vino.”  I better learn “please,” “thank you” and “where the heck is the bathroom?”  I’ve been practicing a few words but I can’t seem to get the accent down and end up stumbling over the words and sounding exactly like some American who doesn’t know the language.   

I better stick to drinking wine and not talking.

Vacation prep has been going on for months.  Aside from actually planning the vacation and transportation and tours (not to mention preparing for my absence at work), I have to be sure Robert is aware we will be gone and is well-stocked with his supplies.  His care facility and Day Program have been notified I will be gone and given contact information for Other Brother in case of an emergency.  They have been warned Robert may get grumpy because his routine of visiting us is being disrupted.

I had to tell Robert a few times that we would be leaving and when we would be gone.  I also wrote it on all of his calendars so he will be reminded when he looks at the calendar.  If he happens to call my office (which happens frequently) then my best friend will talk to him and remind him I’m gone for a while and will offer to take care of whatever he may need.

It’s been an ongoing battle to keep guilt at bay, especially since Robert’s birthday falls while we are away.  Don’t think this didn’t escape his attention – when I first told Robert when I would be on vacation he was quiet for a while and then said, “That’s during my birthday.” 

Yep.  He can’t remember what year it is or the name of the president or what he had for lunch but he certainly knows when his birthday is!

That’s okay; I know Robert will be fine.  My wonderful Mother-in-Law is going to take birthday cake to his Day Program and his house manager is going to treat him to a cheeseburger and Rocky Road Ice Cream that night.  Plus, we’ll have a celebration once we return from vacation.  He’s going to be one happy guy.

We’ve arranged for the animals to be cared for and Other Brother even gets to have Sassy (and all of her medications) again for a while (we’ve shared custody of her ever since Mom died which means Sassy is about 102 years old).

My suitcase is packed and weighs in just under the weight limit (I refuse to pay extra to check another suitcase or pay a penalty for an oversize bag).  Admittedly, my shoes have to be in my carry on to stay within the weight limit but I have to bring several pairs of shoes!  I mean, I have to! I can make a lot of sacrifices but paring down my shoe choices is not one of them.

Thankfully, a friend reminded me to leave my guilt at home because otherwise my bag would be over the weight limit!  I’m taking her advice and going on vacation with confidence the animals and Robert will be well cared for. 

While I’m away, I have scheduled interviews with other family caregivers which (hopefully) will automatically post.  Enjoy meeting these family caregivers!

Also, check back over the weekend of September 7 for epilepsy related posts (including an interview with Robert) in support of the Talk About It Foundation’s first annual Epilepsy Awareness Weekend.

Ciao!