Epilepsy Awareness Month: Follow-up Interview with Robert

Robert is a man of few words but sometimes what he says really makes an impact. I interviewed him four years ago during Epilepsy Awareness Month and his answers were short but they gave me (and I hope others) a glimpse into how his mind works. He is a very positive person who can best be described as content. He is just a happy guy. He wasn’t always like this but I like who my brother has grown to be and have learned a lot from him.

Robert and his word search

From my perspective, a lot has changed in the four years since I last interviewed him. I was curious if he thought so to.

Robert’s Sister: I am curious what changes have occurred in the last four years.  Please remind us how epilepsy has affected your life.

I was born with epilepsy.

Robert’s Sister: What is the most significant change in your life since our last interview?

I’m doing more activities. I walk around the room a little bit.

Robert’s Sister: Has the treatment changed for you?

Not really.

Robert’s Sister: What sort of cognitive, intellectual, emotional or physical changes have you noticed these last four years?

My behavior has gotten a lot better. I think a lot better than I used to.

Robert’s Sister: What caregiving help do you use?

I don’t need much help but some people do help me.

Robert - Always with a word search book

Robert’s Sister: Do you think your life with epilepsy has improved, stayed the same or become worse these last four years? Can you tell us why you think so?  

It’s gotten a lot better. I have not had as many seizures now. The seizures I have are minor. I don’t have the grand mal seizures anymore.  

Robert’s Sister: What has been your favorite moment these last four years? What is your favorite moment or thing?

My word search book is one of my favorite things. My friends are my favorite too and playing games with my friends.

Robert’s Sister: What do you see for yourself in the next four years?

Probably I’ll get healed completely.

Robert Wright: Happy and Content

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

I love doing word search books. (Long pause.)

I love shooting pool too. I’m happy I remembered that! (He laughed while saying this.) 

  

Simple. Content. Happy. Hopeful.

It doesn’t get any better than that.

Trish

The Almost Perfect Day

Thanksgiving is my absolute most favorite holiday. Christmas is a close second but Thanksgiving has to take the top prize because it is all about spending time with family and friends and there isn’t the pressure of racing to find the perfect gift. 

(That's what the day after Thanksgiving is for!)

Richard and I love hosting Thanksgiving dinner and we have done so for years. Sometimes we have a small group but some years we have 20+! This year we had 19 and that was without two of the kids (Christopher is stationed in North Dakota and Caty and her mom were visiting him).

I had a few moments of panic since we haven’t hosted that many in our new house but I felt much better once I did a trial run of how to set up the tables. Not all the tables could fit in one room and I was down one chair but it was doable. (Although I do have to remember to buy another folding chair for next year!)

My two biggest worries were that Puppy would be stressed out and bark at all the new people all day long and that the food wouldn’t be done (or hot) all at the same time.

Thankfully, a few cut up hot dogs to make Puppy happy kept the barking to a minimum. He had to tell us when new people came through the door, of course, but once he realized new people equaled hot dogs he was happy to see more people streaming through. The more the merrier!

My planning for a beautiful table started well in advance but I realized I was still a little stressed when I couldn’t decide on what tablecloths to use. I wanted to use new sheets so people could use markers to write on them during dinner. We’ve done this at past dinners and had such fun playing tic-tac-toe or writing humorous sayings or drawing goofy pictures.

The tablecloths are a cherished tradition of our family Thanksgivings.

However, after buying, washing and drying three sets of white sheets (why in the world can you not buy just a top sheet?!), I realized white didn’t really go with my gold décor.

So, after buying, washing and drying three sets of tan sheets and setting them up on the table I realized the sheets weren’t a sturdy cotton but more of a microfiber. HOW ARE WE GOING TO WRITE ON THESE SHEETS???

After running to the store the night before Thanksgiving to buy yet another three sets of thick cotton, tan sheets I realized – in the middle of the store – that I was perhaps being a little obsessive about the damn sheets. I left a basket full of sheets in the middle of the store and went home to finish baking pies.

The tan, microfiber sheets were going to be good enough. (I had to repeat this a hundred times but, eventually, I believed it.)

I set the table: I used my mom’s china plates as well as a mix of china plates that my dad sold door-to-door. The silverware was pulled out of a felt-lined box that is only used for Thanksgiving. Salt and Pepper shakers were filled (one set given to us by Carol, Richard’s mom) and the new, fancy candle holders from Carol were set on the table with brand new gold taper candles.

Everyone got a permanent marker to write on the sheets-turned-tablecloths.

Thanksgiving morning was full of turkey prep (by Richard) and me peeling potatoes and yams. The weather cooperated so Richard could barbecue the turkey in the sunshine instead of under a tarp in the rain.

It was chaos in the kitchen once everyone started arriving with their specialties but it was that fun kind of chaos with lots of laughter and jostling with hugs and, occasionally, me running to get Puppy chopped up hot dogs when someone new arrived.

I remember saying “no, thank you” to each offer of help as each new person arrived. Thankfully my default answer of all offers of help was ignored or the food would not have been done and warm by the time it was time to eat. It was busy and crowded in the kitchen but the dinner was a team effort and I was grateful my refusal to accept help was ignored.

My one regret of the day was telling Carol “no, thank you” when she offered to come into the kitchen to help. She was the one person who took me at my word and turned to sit down and visit as I asked. I didn’t realize until the following day that her feelings had been hurt that I didn’t invite her into the chaos and laughter of the kitchen.

As the matriarch of the family, Carol felt marginalized, minimized and disrespected. And I did that.

Ouch.

Of course, it was unintentional but to know my actions caused hurt feelings to a woman I adore and love was devastating. I love participating in making memorable moments and this was a moment that I completely missed.

My reasons for suggesting she sit and visit were practical enough (she has trouble staying steady without a walker and the kitchen is small and was already over-crowded with all kinds of boiling and hot foods on the stove and in the oven) but I could have found a way to include her. I know better! I know that it is upsetting to her to know she cannot get around as well as she used to.

As a caregiver, I know how hard it is for people to not easily do things they used to do without missing a beat. I know better and will do better next time.

Thankfully, Carol did have a fun day in spite of this misstep on my part.

Everyone did have a great time, we enjoyed the dinner and had way too many delicious desserts (so much for the “wedding diet!”) and politics were not even a part of the conversation (for the most part)! There were some clever drawings on the tablecloths, lots of tic-tac-toe and word games to remember for years.

Next year, I will be sure to say yes to all offers of help. I will try to not obsess about the tablecloths and I will let Carol help in the kitchen. Oh, and I will have enough chairs for everyone (sorry, Other Brother)!

I will remind myself there will never be a perfect day but that almost perfect is definitely good enough.

Epilepsy Awareness Month – Interview with Amy Schlenker

I think it is only fitting to bring you an interview today, on Thanksgiving, with a mom who watched her daughter suffer through 75 to 100 seizures a day to now knowing her daughter is three years seizure-free. There are still challenges but I love this mom who has demonstrated day in and day out, for years, what resilience means.

Paige Schlenker

Sometimes that means soldiering on while feeling alone. Sometimes it means patiently trying medication after medication without any hint of success. Sometimes it means knowing siblings have suffered because the attention has to be on the child who is sick. Sometimes it means choosing a surgery that is dramatic, extreme and not without risk.

And, sometimes, that resilience and those hard decisions pay off.

Amy is that mom.  

Robert’s Sister: Tell us about the person you are caring for.   

I care for our 11 year old daughter, Paige.

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

Paige was diagnosed at 3 with epilepsy. Our local hospital didn't believe us when we took her to the ER; gladly we got an appointment with a local Neurologist within one week and referred to Children's Hospital – Colorado’s top Neurologist. She was diagnosed with Childhood onset of epilepsy shortly after. VEEG's, MRIS, testing, testing, testing, and home videos of her seizing was our best help with diagnosis. Kids don't seem to seize while hooked up to tests or in a hospital environment.

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

Shattered. Going from a healthy, happy 3 year old to seizing continuously. Hardest part was no explanation as to why they started, and not understanding it all. We did find out after her first emergency brain surgery that the cause of her seizures was Cortical Dysplasia of the right side of her brain.

Paige Schlenker

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

Most definitely! Our older sons started hiding out in their rooms, but I can't blame them, it was all very traumatic. All of our family seemed to treat us like we had the plague. In the eight years Paige has suffered with epilepsy and had three brain surgeries, not a single family member or friend has ever witnessed her seizures. We have been left alone in this.

[Editor’s note: The following paragraph was added after the original post was published.] I want to clarify that this is what WE felt when she first got sick. We were totally alone, and yes we did lose what we thought were some dear friends, people didn't know how to talk to us, so they just quit.

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

Yes and no. She has always been in a contained classroom, so her peers don't see her as different. Other children in the school do see her differently, majority of them are great, nice, loving to her, but also have the ones that have started making fun of her.

Paige Schlenker

Robert’s Sister: What treatments did Paige try? What worked? What didn’t work?  

Paige failed every type of AED [anti-epileptic drug], due to either allergic reactions, increase in seizures due to it, or just didn't help her. She was on six different AEDS by the age of eight. She had her third and, hopefully, final epilepsy brain surgery three years ago at eight years old, a complete right modified functional Hemispherectomy. She has been seizure free since the morning of this surgery. Her last seizure was at 4:00 a.m. on July 31st, 2013. She now lives with left hemiplegia. She has bilateral braces on her legs to walk and no use of her left hand what so ever, also functionally blind on the left of both eyes.

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

No doubt these medications are like poison. Our poor daughter had no regulation of any emotions, behaviors, feelings. She was in a complete fog most of the time. She had nocturnal seizures(75 – 100 nightly) so she never got sleep; then add Topamax, Keppra, Banzal, Lamictal, Diazepam and Onfi 2x daily and she had no chance of even a life.

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

We live in a very small town. I have worked with the local newspaper on articles during Epilepsy Awareness month, talk to the kids at Paige's school about epilepsy and what she has gone through over the years, and still today due to her left hemiplegia. 

The Schlenker Family

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

It stopped our life as we knew it. I feel like we have lost so many years due to seizures. Our older sons grew up, our youngest (who was two weeks old when Paige's seizures started) has grown up without me even remembering him as a baby; they all four missed any type of childhood.

My husband and I are stronger than ever – we have to be – but we have lost the "us." I haven't been able to work since Paige became sick which has caused serious hardship for us. But it also made us be strong, made us advocate for our daughter, learn about a disorder that I never knew anything about or heard about. It brought me into a world of amazing special needs families. We may have lost what we thought were real friends due to our daughters Epilepsy, but the fellow Epilepsy families I have meet over this journey has taught me what true friendships are.

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

That’s a hard one. I have great memories of her before epilepsy, the years during the worst of it when she still shined, but my favorite memories are recent ones. The sound of her laughter when she laughs so hard she gets the hiccups, cracking jokes to her dad, even when she gets angry with me. She is seizure free and off of all her AEDS, her mind is so clear, she is thinking for herself. This is what my happiness is. And to think they removed the entire right side of her brain for her to be this way!

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

It is truly devastating. I don't know how else to describe it.

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

I truly appreciate you for the Epilepsy Awareness you bring. You and Robert have been my inspiration over the years. You have taught me to advocate. We need so much more awareness than what there is now!

I am grateful to Amy, Paige and the rest of their family for sharing Paige’s story. It is families like this who bring about epilepsy awareness and who inspire me to continue to share their stories. Thank you, Amy. I hope Paige continues to be seizure free and I look forward to following up again in a few years when Paige is a teenager!

Since it is Thanksgiving, I would like to say I am grateful to the scientists, researchers, nurse practitioners and doctors all working to find a cure for epilepsy. I am grateful to the families who put one foot in front of the other to do whatever they can to stop the seizures. I am grateful to the epilepsy advocates who want everyone to know just how important it is to find a cure and to give these families and caregivers support.

I am grateful to you for reading these stories and sharing them with people who may not be aware of how serious and devastating epilepsy can be.

Wishing everyone a wonderful day full of love, family and friends.

Happy Thanksgiving!

Trish

Epilepsy Awareness Month – Follow-up Interview with Leslie

Get ready for my soapbox. You know it’s coming.

Graphic provided by
Epilepsy Foundation of Greater LA
& EndEpilepsy.org

Every year during November I work to spread awareness of epilepsy and to tell the stories of people with epilepsy or their caregivers. Usually, around the midway point, I rant and rave because there are so many good people dealing with such crap due to epilepsy not being controlled or medications causing damage, and my frustration boils over!

We need a cure. Simple as that! Leslie, Robert and everyone else deserve nothing less.  

The follow-up interviews tear at my heart and Leslie is one who has held a special place in my heart since her last interview.  

Leslie was kind enough to participate in the Epilepsy Awareness Month interviews in November 2012 and her story broke my heart and angered me all at once. Leslie’s story is so compelling that it was told in two parts. (You can read Part One and Part Two to learn more about Leslie.)

Leslie is one of 50 million people worldwide who live with epilepsy. She is also, unfortunately, someone who has experienced first-hand the misconceptions and stigma that often comes with having epilepsy. (Yes! That still happens!)

Leslie’s seizures are uncontrolled which is a fact of life for one-third of those with epilepsy (Robert is in that group as well). Leslie deals with depression along with her epilepsy (a common occurrence) yet soldiers on and has hope for the future.

She perseveres and deals with what is thrown at her – even when it is horrific and crappy and awful.

I admire Leslie’s strength and her willingness to throw others a lifeline and, frankly, to not give up even when that option is very, very tempting.

Robert’s Sister:   I am curious what changes have occurred in the last four years.  Please remind us how epilepsy has affected your life.

I first developed epilepsy in 1974, when I was a 17 year old junior in high school. As a result of this tremendous life change, I lost most of my friends, and most of the faculty avoided me. The majority of people believed I was either mentally ill or possessed. That was the thinking in the 70's. My family didn't talk much about it. I was expected to just take my medication and get on with things.

After a seizure free year, I was weaned off medications and then had another seizure, resulting in a black eye. That's when I first lied and said I'd walked into a door because it did look like someone had punched me. Years later, my ophthalmologist found a severely detached retina, the first in a journey of medical interventions for various injuries, which I still suffer to his day.

Unfortunately, my epilepsy has never been fully controlled although my husband and I were blessed with a healthy baby daughter in 1995.

Robert’s Sister: What is the most significant change in your life since our last interview?

Aside from my increasing number of seizures, which we try to take in stride, the biggest change has been in our daughter. She has graduated from homeschooling (yes, you CAN homeschool as a parent with seizures) and is maintaining an A average in biology in community college. She travels the world independently (her last trip was from the USA to Australia, where she would like to complete her education.)

I suppose one could say my biggest change would be a diagnosis of Conversion Disorder, to which I say, "Just add it to the pile." My psychiatrist and I are currently exploring why I feel guilty for everything. I have a suspicion it's tied to all the things I cannot do because of the seizures.

It's funny – I keep getting an image of a woman who ran a marathon despite having multiple seizures. Why don't I do that? Oh yeah, I'd break multiple bones. But still . . .

Robert’s Sister: Has the treatment changed for you?

Drugs, drugs and more drugs. Because I have absence, complex partial, simple partial, and occasional tonic clonic seizures, I'm on a cocktail of multiple medications. In addition, I'm seeing a psychiatrist for Conversion Disorder which started after a violent crime was committed against someone I love. (I cannot go into more detail regarding the crime because it has not gone to trial yet.)

Conversion Disorder also causes seizures, but for psychiatric, not neurological, reasons. In addition to the seizures, I also feel very depressed, so I am also being treated for that, both with medication and talk therapy.

My husband and I are currently looking into medical marijuana since both surgery and implantable devices have been ruled out. I am not an advocate nor against the use of medical marijuana; my theory has always been: if it works for you, go for it.

Robert’s Sister:  What sort of cognitive, intellectual, emotional or physical changes have you noticed these last four years?

Oy.

I have more trouble with recall of memories and words. I have time lapses more often and, for those of you who also experience this, it means that often strangers have to fill in the blanks. Who are these people, and can they be trusted? I don't know. It's one of the more frustrating parts of this disorder. 

I fall down more often, due to seizures and lack of balance. Right now I'm using a walker, which I'm determined to get rid of soon. I fell into the car, an accident I don't remember (except for telling my poor husband to stop pulling on my leg), and have zero memory of the three medics who inched me out, getting to the hospital, nothing until I was in ER. I truly hate losing these patches of time.

Since we talked last, I have been placed on anti-depressants, which have helped some, but I am becoming more emotional, probably due to my loved one being sexually assaulted.

Robert’s Sister: What caregiving help do you use?

In general, my husband (who I would compare to Trish or her husband Richard). And, believe it or not, I use Robert and his "excellent" attitude. If I'm injured, I use a caregiving service. If I have no balance, I use my bed (lol).

I also see a see a psychiatrist (who is also a neurologist) weekly to work on my Conversion Disorder. This disorder turns emotions into seizures. I was diagnosed with this a few months ago, along with the epilepsy, and we are hoping successful treatment will cut the seizures in half. 

I urge anyone who receives an odd sounding diagnosis to get a second, third, even fourth opinion, plus read up on the diagnosis. Initially, I will admit feeling offended. The more I learned about it, however, the more it turned out to be the way the doctor presented it than my reaction to it.

Robert’s Sister: Do you think your life with epilepsy has improved, stayed the same or become worse these last four years? Can you tell us why you think so?

Both. How is that possible? On the seizure front, I have many more, and different kinds of seizures, most of which are not responding to treatment. And I have a new diagnosis in addition to epilepsy: Conversion Disorder, which is a psychiatric disorder that causes seizures. That part has become worse.

What has become better is that my neurologist was able to diagnose the Conversion Disorder, and my internist was able to refer me to an excellent psychiatrist. You need to be able to "click" with your therapist, so don't hesitate to shop around. I anticipate things will get worse, then better, as I work with her, and I will need less medication. I see the future as much better, so all I have to do is hang on.

Robert’s Sister:  What has been your favorite moment these last four years? 

Definitely when my husband and I traveled to Ohio from California to help celebrate the birthday of an Internet friend. We met a total of four Internet friends in all, including the birthday "girl's" dog, who took a liking to me. We played the game Taboo, which was great fun, and went out for a lovely dinner for her birthday. I did miss some of the fun when I had to nap in order to avoid having a seizure, but it was a small price to pay.

Robert’s Sister: What do you see for yourself in the next four years?

I see the Conversion Disorder being successfully treated and the seizures being cut more than in half. I hope, of course, they will be gone, but since I've had them since 1974, a reduction would be nice. Then I would be able to do volunteer work somewhere, be in better physical shape, and perhaps travel some with my hubby. I would have a reduction in medication, better cognitive skills, and regain my ability to crochet.

That would all be a dream.

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

Don't give up.

As I read that, it sounds nuts, coming from someone who has wanted to give up so many times. But if you can think of one, just one person who would miss you, that is reason enough to keep going. If there is one, just one person you can call, no matter where he or she is, who she is whom you can talk to, call that person. If there is no one, call your doctor. If you’re not comfortable talking with you doctor, get a therapist. Depression is very common among people with seizure disorders. Or email Trish (robertssister@att.net) so she can put you in touch with someone. Or call suicide prevention (phone number: (800) 273-8255). Or 911. You can always reach out. And you are always worth it. Always.

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

Rather than joining a group, I would I would urge everyone to follow or friend Trish Hughes Kreis and her husband, Richard. Trish writes mainly on epilepsy and caregiving, while Richard writes regarding many other subjects of interest to us all. If anything else catches your eye, by all means join it. You can always bow out.

I am inspired by Leslie and every single person I have interviewed this month. Each story is unique but the drive to fight and to find a way to stop the seizures is so very strong. My heart breaks with every one of them as they struggle through the seizures, the medications, the crap life throws at them.

And yet . . . what I see from them is strength, resilience, perseverance, tenacity. These are the qualities of those with epilepsy. These people do not give up.

We have to honor these people and not give up until we find a cure.

Nothing short of a cure is acceptable.

Leslie, I want your dream to come true.

Trish