Jeff Klauk: Golf, Epilepsy, Advocacy and Family

Jeff Klauk is a professional golfer, dad, husband, son and brother.

He also has epilepsy and is an advocate for epilepsy awareness and has taken The Pledge to Go Beyond Okay.  On this website, I watched a clip of his wife talking about being his caregiver and describing Jeff’s seizures.  She describes Jeff chuckling at the onset of his Partial Onset Seizures which immediately endeared this family to me as Robert will oftentimes chuckle when he is coming out of his seizures.   

In order to get the word out about this initiative, he and Dr.Selim Bendadis (who is the Professor and Director of the Comprehensive Epilepsy Program at University of South Florida and Tampa General Hospital) sat for hours doing interviews about The Pledge and life with epilepsy.  

Hours of interviews and I was fortunate enough to be one of the interviewers!  The format was very simple: I had ten minutes to ask one or both of them whatever questions I could come up with.  They would be filmed and my voice would be heard asking the questions.  This immediately set my mind at ease – no need to buy new Spanx!

The first order of business was to refresh my knowledge of golf.  Okay, there wasn't much knowledge to refresh – I had to basically start from scratch.

Clubs. Eighteen holes. Patience. PGA tour card. 

Got it.

I next concentrated on what to ask both of them (I couldn’t just ask one of them questions and have the other sitting there - Miss Manners would have my head!)  It took me several days to figure out what I wanted to know from Jeff and Dr. Bendadis but soon realized I wanted to tailor my questions to what I am passionate about: family and advocacy.  

It didn’t take long into the ten eleven minutes to realize how passionate Jeff is about his family and epilepsy advocacy too.  Jeff shared what he would like his kids to learn about epilepsy: be persistent and never give up.

Dr. Bendadis shared what he sees as the future of epilepsy treatment and research.

I should note that while Jeff is following one treatment plan that has successfully worked for him, he is the first to point out that no one treatment plan works for everyone.  Jeff reminds us that epilepsy has no cure but it’s important to never give up in our search for it.

It was an honor to talk with both of them and I thank both of them from the bottom of my heart for their time, passion and advocacy.

Thankfully, they didn't ask me any questions about golf . . .

What Seven Minutes Means to Me

Seven minutes is not a lot of time to do anything. 

Heck, 10 to 20 seconds isn’t any time at all to get anything on my to-do list accomplished but it is long enough for Robert to have his typical seizure.

Robert's helmet has taken a few good knocks

Head down and to the right.

Tugging on his clothes.

Hands twitching.

Giggling as he awakens.

If he is standing and has a seizure and there is no one behind him, he falls backwards to the floor (or against a wall or onto the toilet). Looking at the many scrapes on his helmet tells me that is the best piece of medical equipment he could have.

Robert doesn’t know when he has a seizure and will usually argue with me if I tell him he had one.  I stopped telling him unless he asks or he lands on the floor (he has had enough seizures in his life to realize if he wakes up on the floor, he had a seizure).

The typical seizure for Robert doesn’t involve convulsing and doesn’t usually last very long.  A couple of years ago and with his permission, I filmed one of his seizures to give people an idea of what they look like since his aren’t like they are portrayed in the movies.

Robert’s seizures are uncontrolled and I’ve always estimated he had probably five seizures in a week. It was really difficult to gauge because New Home never kept track like they were supposed to and would give me seizure logs showing maybe three seizures a month if I got a log at all.  I knew he was having more than that because he had them almost daily when he was with us on the weekends.

Now that he lives with us, I have been able to keep better track of his seizures.  It’s difficult to know if he is having more than normal because they weren’t always noted before he lived with us.  Either Richard or I are always with Robert and even if we aren’t, we are watching him on a video monitor.  I’m fairly confident we are aware of most of his seizures (although, at ten seconds a shot, it is easy to think we miss a few here and there). 

Since moving in with us, we have recorded Robert having at least two seizures every day.  Sometimes more than that but rarely lasting a minute or longer.  There’s a seizure in the morning while he is getting cleaned up for the day which I can prepare for (he’s standing when it happens so I’m prepared to catch him).  So far, that’s the only one that is predictable but I feel lucky there’s any consistency at all since one of the biggest problems with seizures is how they strike without warning. Sure, there are triggers which people can figure out but it’s never consistent (at least we haven’t found them to be).

Three to four minute seizures are really at the extreme of his “typical” range.  A few years ago, Robert had a cluster of long seizures just after moving into New Home. As it turned out, it was because Nurse Ratchet had arbitrarily decided to change his medication schedule to fit better with her own schedule.

I was about as happy about that as you might imagine.  

These blocks of time seem so tiny when thinking about any activity other than a seizure.

Ten seconds?  Who even thinks about ten seconds passing by?

Unless you’re counting or watching the stop watch, waiting for the seizure to pass.

Three minutes?  My husband can load and unload a dishwasher in that amount of time.  I can put a load of clothes in the dryer and a new one in the washer.  Crazy Puppy can eat his meal and our other dog’s meal in that amount of time. 

It can also be a very long wait for the seizure to pass.

Seven minutes?  I can get a lot done in seven minutes – make Robert’s bed in the evening and get started on play time with the dogs.  Robert can eat his bowl of Rocky Road ice cream in seven minutes. 

Robert had a seven minute seizure this week and it was extremely unsettling.  The stop watch kept ticking away the seconds, then minutes while his head bent down and to the right at the dinner table.  His hands twitched and he started smacking his lips.  At the ten second mark, I expected him to come out of it and begin to eat dinner.  Twenty seconds passed and I stood by him, watching. One minute went by and Richard stood on the other side of him in case he fell off his chair.

Robert continued to look to the right with his eyes closed, smacking his lips and twitching his hands.

Two minutes. Three minutes. Three and a half minutes.

The wait was excruciating.

At five minutes, I gave him an Ativan which we have on hand for just such a scenario.  It wasn’t easy since it is in a pill format but somehow, he swallowed it.

Two minutes later, he started to come out of the seizure.  After a few more minutes, he knew who I was and who Richard was but didn’t know where he was.

Several more minutes later, he was eating his dinner and declaring the meal excellent.

He was pretty groggy and sleepy the rest of the night but once he was in bed, I again asked how he was feeling and, of course, he answered, “Excellent.”

Seven minutes of a seizure was extremely scary and unnerving for me and my husband.  Seven minutes seemed to last forever for us. 

For Robert?

Seven minutes was not near long enough to take the excellent out of Robert.

Robert’s Bucket List

Richard started sharing his Bucket List on Caregiving.com (he actually calls it his 55 Gallon Drum List because, well, just because my husband is goofy sometimes).  It’s fun to read about his dreams and to see if there is any wish I didn't know about (there is!).

Photo Credit: Matt Stevens
(who can now cross this off his own bucket list)

Richard’s list includes:

1. Learn to scuba dive;

2. Fly a glider; (I didn't know about this one)

3. Visit Paris;

4. See Stonehenge;

5. Learn to brew beer;

Richard's list got me thinking about my own wish list of places I want to go and things I want to do in this lifetime:

1. Go to Paris;

2. See the Mayan ruins;

3. Go on a cruise to Alaska;

4. Watch every movie that has won the Best Picture Academy Award;

5. Read all the books that I have on my living room bookshelves;

We were talking about this when returning from what is now our tradition of dinner out on Friday nights and Richard asked Robert what was on his bucket list.  Robert didn’t know what the heck Richard was talking about so Richard explained: What are some things you have always wanted to do? 

The simplicity of Robert’s answers should not have surprised me.

1. Watch Jeopardy;

2. Do Word Search puzzles;

3. Go bowling;

4. Go to France;

Robert jokes about going to France so I love that it is on his bucket list.  He also jokes about drinking whiskey and going to New York so I suspect those will show up on his list the next time we ask him. 

What’s on your 55 Gallon Drum list? 

Co-Caregiving: Recognizing the Pitfalls and Avoiding the Sinkholes

I have to break it to you: Co-Caregiving is not all roses, sunshine and success. 

Yep, there are bad days.  On my good days, I will break down that bad day (or days) into moments and realize we had some bad moments. 

Co-caregivers need to have some fun - and kisses!

Of course, who wants to be so rational on a bad day?? 

Co-caregiving situations can vary and since the relationships vary too, so do the pitfalls.  My husband, Richard, and I are co-caregivers for my brother, Robert.  I help Richard with some of the caregiving for his mom but would actually classify him and his brothers as co-caregivers for her. 

Siblings can be co-caregivers for a parent; friends can be co-caregivers for a neighbor and spouses can be co-caregivers for a relative or friend. Each relationship brings its own dynamic and issues to the situation.

Is there sibling rivalry between the co-caregiving siblings?  You can bet those hurt feelings and unhealthy communication styles learned while growing up will show themselves while caregiving.

Neighbors may be kind enough to step up to help someone they have lived next door to for many years but they may not like the other neighbor who is helping also.  Those differences and problems will show up in co-caregiving.

Spouses as co-caregivers?  If you’re past the honeymoon phase then you have been married long enough to know what hot buttons set off your spouse.  Trust me; caregiving will not make those sensitive issues go away.

Many of the pitfalls co-caregivers fall into are due to what’s going on in their relationship anyway.  The good news is, if overcome, these can easily turn into successes. 

Dueling Expectations.  Expectations can be unrealistic to begin with but when there are two people with different expectations and they don’t talk to each other about those expectations, it can lead to problems. 

Richard and I don’t have a huge problem with this particular pitfall but we do have different expectations about the decline of Robert (at least the timetable of an expected decline). What we’ve done right is discuss these differences.  Richard sees Robert declining at a faster rate than I do and wants me to be prepared to provide a higher level care for him when it is time. He worries I won’t know when it’s time to find a facility for Robert again.  I disagree with the rate of decline Robert is experiencing and actually think it has stabilized since we have taken over his care full-time.

I am confident, however, Richard and I will be able to discuss these expectations and Robert’s need for additional care as that becomes necessary.

Solution. The most important way to avoid falling into a sinkhole with this particular potential problem is to have a discussion about expectations before committing to caregiving and continue the discussion while caregiving.  It’s important to keep an ongoing dialogue with your co-caregiver about pretty much everything.

Power Struggle.   The beauty of having two control freaks as co-caregivers is we can get stuff done!  Where trouble might happen – theoretically speaking, of course – is when we both have our own way of doing something and the other person’s way isn’t “right.” 

Not that this ever happens to us . . .

For the most part, these sorts of power struggles over the way something is done can be resolved with a couple of deep breaths and remembering that how one person makes a bed isn’t necessarily worse than how another person makes a bed.

Theoretically.

The problem is with more critical aspects of caregiving.  For instance, there should not be a struggle over who talks to the doctor or how medications are dispensed. 

Solution.  If the struggle is over how someone makes a bed or does laundry, first try to understand why the other person does things a certain way.  For instance, I layer Robert’s bed with a fortune in bed pads but I do it so Robert’s overnight incontinence doesn’t cause me more work in the morning.  I wash all of his clothes in hot water so his clothes and sheets are sanitary.  However, as Richard rightly points out, “You both need to trust each other in that they can do it.” It may not look the same or be done the same way but as long as the underlying reason for doing something is taken into account, then it might be okay to let go a little.

Theoretically.

As far as the more essential parts of caregiving, the responsibility for them need to be discussed and agreed upon by the co-caregivers.  For us, Richard is the primary caregiver for his mom, so he is the point of contact with the doctors.  I am the primary caregiver for Robert so I talk with his doctors and handle his medications.  We both can be back up in a pinch but unless Richard asks me to talk to his mom’s doctors, I sit back and let him handle the conversation. His brothers do the same.

Equal Division of Responsibility.  This was counted as one of our successes but it can just as easily become an issue.  I have this neurotic need to be confident I am doing my fair share.  This can cause a problem because when I want to go to a yoga class or spend time with my daughter, I may feel that I am taking more time off than Richard has had.  This leads me to the annoying behavior of verifying with him that he doesn’t mind I go. “Are you sure? Are you sure? Are you sure?”

His response is usually, “I WOULD NOT HAVE SAID ‘NO PROBLEM’ IF I HAD A PROBLEM." (Yeah, those caps are all his). 

Solution.  Communicate with each other. If I ask if Richard minds staying with Robert while I do something for myself, I need to trust his answer.  If I’m feeling overwhelmed and I feel I am doing more than my share, I have to be able to tell Richard I need help.  If Richard has had a run of doctor appointments or trips to the hospital with his mom, he has to be able to raise the white flag and ask his brothers or me to step in for a day or two. 

Attitude adjustments.  This is a news flash to absolutely no one but I’ll mention it anyway: I am a pretty serious person.  I am focused, committed, driven and need to sometimes be reminded to laugh a little.  On the other hand, Richard loves to joke around (yes, even when I’m trying to stay serious) yet if something bothers him, he will hang on to it like a dog with a bone. He stews, it festers, unpleasantness ensues. 

(I don’t like admitting these things to myself much less in a public forum but if we’re going to be successful co-caregivers, we have to know what might drag us into a sinkhole.)

Solution.  We both need to chill out sometimes.  Let things go. Laugh a little more. Stop taking ourselves so seriously.  After all, we don’t actually know how many more caregiving days we will have and I certainly do not want to waste them with a bad attitude.

We are new at this co-caregiving role but we seem to have more successes than pitfalls.  As we continue to work out the bugs and learn from others who have more experience with this than us, I suspect we will have more successes to share. 

Our co-caregiving style may not work for everyone (heck, it sometimes doesn’t even work for us) but we know we’re in this together and that means a lot to both of us.  What’s important is remembering to let go of the little irritants and embrace the goal: taking care of a family member or friend who can no longer take care of themselves and enjoying that role for as long as possible.

We are always looking for more examples of co-caregiving so please share what pitfalls you have been able to resolve in your caregiving experience. 

Co-Caregiving: Tips for Success

Our caregiving situation is not unusual.  According to a 2009 study conducted by the National Alliance for Caregiving in collaboration with AARP, approximately one-third of caregivers care for two or more people.  

The Team: Trish and Richard with Robert in the middle

In our own situation, I am the primary caregiver for my brother, Robert, and Richard is the primary caregiver for his mom, Carol.  To add to the mix, Richard is a caree himself because of his chronic back pain.  We’re each helping to care for at least two people and we’re doing so together.

Becoming co-caregivers didn’t happen overnight.  It took many years for Richard and I to develop into a successful co-caregiving team. 

This is not to say we are always successful but we will discuss the challenges and pitfalls of co-caregiving in the next post.  For now, let’s talk about what works.

Knowing Our Strengths.  It is important for us to not only know our own strengths but the other co-caregiver’s strengths as well.  Fortunately, we are both organized and prefer “neat and tidy” to chaos (just ask those kids we raised).  Richard tends to nest better than I do yet we all benefit from it!  Before Robert moved in, Richard was on not only a cleaning spree but took up canning jam and spaghetti sauce as well as trying his hand at pickling asparagus.  I’m sure I gained five pounds before Robert even moved in with his never-ending supply of Rocky Road ice cream in the freezer (not that I ever eat ice cream . . . ).

While Richard was canning and cleaning, I was creating spreadsheets for the medication and supplies, ordering supplies and contacting all the agencies we would be dealing with.  My “nesting” showed itself in organizing cabinets in our garage for Robert’s clothes and supplies. 

Recognizing Limits. This is huge.  At any time and for a  variety of reasons (bad day at work, not enough alone time, not enough sleep/food/water, woke up on the wrong side of the bed, increased back pain for Richard), either one of us can feel overwhelmed and cranky. I recognize the signs when I need a break: I’m short-tempered, snap at anyone (including the cat) and have no interest in talking with anyone. Leave me alone when I’m at my limit (seriously, I am not pleasant).  Thankfully, my husband understands this (most of the time) and knows to steer clear. When I realize I’m cranky, I have to figure out what is wrong and then take a break to correct it (eat something, take five minutes for myself) and it helps, even if for a little bit.

When Richard is at or past his limit, it is usually related to his back pain.  He’s either done too much or has a flare-up.  He knows when this is happening (usually a few minutes after the rest of us do) and he will take a nap, go to our bedroom to stretch his back or have some quiet time. 

We both are learning to recognize when the other needs a break without being accusatory or nagging.  “What the heck is the matter with you?” is not often said out loud in our house.  (I’ve been known to think it a time or two, however).

Setting Priorities.  Sometimes it feels as if I have a magical to-do list (and not in a good way).  Every time I cross one or two items off the list, five more appear in its place.  The to-do list is never, ever completely done which makes it a necessity to prioritize.  Richard and I both understand that if we are at our limits (see above) but we still have to have dinner, give Robert his meds and get him ready for bed then it may be a night to order pizza.  Sure, we prefer to have a healthy, home-cooked meal with green vegetables and fruit but sometimes the priority is giving ourselves a break instead. 

Equal Division of Responsibility.  This is very important to me.  I don’t want to feel as if I am not contributing my fair share.  Maybe it’s because we’ve been together for so long but dividing up the responsibilities when Robert moved in was seamless.  I get Robert up in the morning and get him bathed and give him his clothes for the day.  While he dresses, I unmake his bed and start a load of laundry. In the meantime, Richard makes decaf coffee for Robert and a mocha for me.  (I’m spoiled!)  He gets Robert’s breakfast ready and packs his lunch for Day Program.  We share dog duty and both see Robert off to Program in the morning.

In the afternoon, Richard greets Robert when he gets home from Day Program while I’m still at work.  He will clean up Robert if needed and gives him a snack and lets him watch television.  When I get home, I give Robert his meds and start dinner.  Richard does the clean up after dinner and I get Robert started on his bedtime routine of brushing his teeth, shaving and changing into pajamas and getting into bed. 

There aren’t that many variations on the schedule (except hubby sometimes makes dinner – especially if it’s pancake night!).  It feels like a very  fair division of duties which makes us both happy and keeps Robert well-cared for.

Communication.  I hesitate to even include communication as an important part of a successful co-caregiving team because it seems so obvious.  Common sense dictates Richard and I have to talk to one another in order to work as a cohesive unit.  As simple of a concept that is, we do need occasional reminders. I am more than willing to admit we see a therapist every now and then to keep us on track and to work through any difficult issues that come up.

Asking for Help.  I had planned to end with communication but realized something else contributes to our success as co-caregivers - being able to ask for help, either from each other or from an outsider.  We see a therapist, we both get massages to help with stress and reduce Richard’s back pain and we ask one another if we can have a few hours away.  Sometimes I will go shopping with my daughter or Richard will have coffee with his mom and brother or volunteer at the animal shelter.  Both of us have taken up yoga and are okay asking the other one to stay with Robert while we attend a class.  What we need to figure out next is how to get a break together!

It’s early in our co-caregiving journey so I am sure I will learn more of what makes us successful as we go along.  In the meantime, the next post will focus on what challenges and pitfalls we’ve run into and how we manage to not get stuck there. 

Please share your own co-caregiving tips for success!

Speedy Shines: A Turtle (and author) With a Big Heart

Robert with Speedy Shines

I first met Gina Restivo during the Robert’s Sister Epilepsy Interview series in November. Gina is a children’s book author, terrific mom and fellow avid coffee drinker who continues to amaze me. She first wrote the children’s book, Fly Danny, Fly and included a dedication page in that book to the Danny Did Foundation which was created after 4-year-old Danny died of SUDEP.  (If you’re a regular reader of this space you know 50,000 people a year die as a result of epilepsy related causes).

I was excited to learn Gina had a new book, Speedy Shines, coming out and anxiously awaited the opportunity to purchase it. Sure, it’s a children’s book but it was about a turtle!  (We have a turtle so I’m partial to turtles). 

Once our copy arrived, I showed it to Robert and told him people who buy the book help two groups who help people with epilepsy. Robert liked that. (The Chelsea Hutchison Foundation and the Danny Did Foundation are two foundations who were created after the founders’ families both lost a child to epilepsy).  

Robert wanted to read the book.  Robert is able to read but it is slooow going.  Reading about a turtle seemed appropriate.

Don't interrupt me - I'm reading

Throughout the afternoon I checked on his progress and noticed he read each and every page thoroughly. Part way through, I asked him how he liked the book so far and he said, “It’s a nice book.”  (Robert is a man of few words.)

I let him get back to reading.

Once he was finished, Robert declared, “I had a fun time reading it.”

It was my turn to read it.  The illustrations by Martin Heraty were colorful and whimsical with delightful details (on one page, Speedy is reading a stack of books, one of which is named “Finding Your Inner Shell”).  Cute!

The story was sweet and heartwarming.  Even though he was surrounded by friends and was making the most of his original home, Speedy felt a tug at his heart and realized he had to muster the courage to find what he was missing. Speedy was searching for where he truly belonged and had to decide if he should follow his heart to find it.

Courageous indeed!

I’m not a professional reviewer but I know enough not to give away the ending so you’ll have to read for yourself whether or not Speedy finds what he was looking for!

Gina Restivo says, “I think that Speedy Shines is a wonderful way to bring epilepsy to the general public with the dedication page to The Danny Did Foundation and The Chelsea Hutchison Foundation at the end of the book. There are a few statistics on that page that will hopefully shine a light on epilepsy while bringing kids a cute story about a turtle who found his shine once he found the right light for him. This book is a way to involve more than the epilepsy community in the fight for a cure. Speedy Shines and is so inspired by those struggling with epilepsy and I feel certain that if the general public is given a window to see what I do, they will be inspired too!”

Gina shines in her work to bring about broader awareness of epilepsy and is due many thanks for her work!  

Once you read the book, let me know in the comment section how much you enjoyed it. 

Shine on, Speedy!

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: 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.