Epilepsy Awareness Month: Advocating for Awareness and Answers - Interview with CURE

November is Epilepsy Awareness Month! While I try to advocate and spread awareness and education year-round, it is always exciting to give a little extra effort in November.

Last year, we had 30 days of interviews with people affected by epilepsy. I was quite honored to highlight the stories of people living with epilepsy or those who lost a loved one to epilepsy or those advocating to spread awareness and education about epilepsy. If you have a chance, please read these amazing stories of hope and inspiration.

 

This year my focus is on advocacy organizations and I have several interviews lined up. Since taking over Robert’s care, I have become involved in the epilepsy community and it is amazing to me how many organizations there are to help those with epilepsy as well as their families and caregivers. November is also National Family Caregivers Month so this is a perfect storm for highlighting advocacy organizations.

Each of these organization offers something unique and special. Whether the organization raises millions of dollars for research or raises money to fund the purchase of a service dog or is there for support or to tell stories, these organizations have several things in common: their heart, their commitment and their desire to bring about change.

I am happy to showcase these organizations and appreciate their taking the time to be interviewed.

Today, I am absolutely thrilled to bring you an interview with Tracy Dixon-Salazar, PhD, an Associate Research Director of Citizens United for Research in Epilepsy (CURE).  I almost fainted when she agreed to the interview and I owe a special thank you to the phenomenal and generous Christy Shake for introducing me to Tracy and to Susan Axelrod for her support of the interview.

Now that I’ve recovered (without fainting, thank you very much), please meet Tracy:

Tracy has been a volunteer on the CURE Research Review Board since 2006 and joined CURE as a Research Manager in 2013. Tracy received her Ph.D. in Neurobiology from the University of California, San Diego where her dissertation focused on the role of immune molecules in normal brain development and plasticity.  She went on to do a post-doctoral fellowship where she identified genes that underlie epilepsy and studied their disease-causing function using induced stem cell and animal models. Tracy’s desire to get a Ph.D. was inspired by her daughter, Savannah, who suffers from Lennox-Gastaut Syndrome type epilepsy with no known cause. She is a staunch epilepsy advocate and has worked with numerous organizations to communicate epilepsy research to families and to instill the hope that by working together, one day we will find a cure for this devastating disorder.  As Associate Research Director, Tracy will use both her expertise as a researcher and her passion as a Mother of a child with epilepsy to further our mission of finding a cure for epilepsy.

Now, please join me in learning more about CURE.  

Robert’s Sister:  Tell us the name, mission and goals of your organization.  

Citizens United for Research in Epilepsy (CURE)

CURE, Citizens United for Research in Epilepsy is a nonprofit organization dedicated to finding a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease.

Robert’s Sister:  When was your organization founded and what was the catalyst for forming the organization?  

CURE, Citizens United for Research in Epilepsy, was founded in 1998 by parents of children with epilepsy who were frustrated with their inability to protect their children from the devastation of seizures and the side effects of medications. Unwilling to sit back and accept the debilitating effects of epilepsy, these parents joined forces to spearhead the search for a cure.

CURE’s mission is not only driven by the pressing need for scientific research and data, but by the painful struggle of families who suffer from epilepsy worldwide.

Robert’s Sister:  What do you see as the greatest need for epilepsy awareness or advocacy and how do you help fulfill that need? 

Lack of understanding of the prevalence and potential devastating effects of epilepsy is a major problem in our society today.  Because the public generally does not know what epilepsy is, and how life altering it can be for the many patients and families who have it, this leads to basic misconceptions about epilepsy in general as well as a significant lack of research dollars being spent to find a much needed cure.  CURE is working to change that!

Robert’s Sister:  What do you want people to know about epilepsy and the people you are working to help?

• Epilepsy, or more accurately, the Epilepsies, are a diverse group of neurological disorders characterized by recurrent seizures.
• 1 in 26 Americans will develop epilepsy in their lifetime.
• An estimated 3 million Americans and 65 million people worldwide currently live with epilepsy.
• Each year at least 200,000 people are diagnosed with epilepsy.
• In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
• Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's combined – yet receives fewer federal dollars per patient than each of these.
• It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.
• Sudden Unexpected Death in Epilepsy (SUDEP) accounts for 34% of all sudden deaths in children.
• 2.2 million Troops have served in the current Iraq and Afghanistan conflicts; it is estimated that 440,000 of these soldiers will experience traumatic brain injury (TBI) and more than 100,000 of these soldiers are expected to develop post-traumatic epilepsy (PTE).
• Epilepsy costs the United States approximately $15.5 billion each year. The indirect costs associated with uncontrolled seizures are seven times higher than that of the average for all chronic diseases.

Robert’s Sister:  What are some events your organization hosts in order to raise funds and awareness?

CURE fund research grants every year in our search for a cure. 

CURE also host numerous fundraising events to raise money for research.

CURE also just started this really neat new Seminar Series where we bring cutting-edge epilepsy research to Universities around the globe.

Robert’s Sister: Tell us about your successes!

Since its inception in 1998, CURE has raised more than $26 million to fund research and other initiatives that will lead the way to a cure for the epilepsies. CURE funds seed grants to young and established investigators to explore new areas and collect the data necessary to apply for further funding by the National Institutes of Health (NIH). To date, CURE has awarded 151 cutting-edge projects. CURE has advanced the search for a cure in so many ways, it’s hard to describe them all here. Check out this link to learn more.

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

I remember the first seizure vividly. I awoke to the sound of choking coming from the room of my two-year-old daughter, Savannah. I entered to see her tiny little body jerking about violently in her bed. My husband and I didn’t recognize this as a seizure—we thought she was choking. I’ll never forget the words of the paramedic that night who said, “her airway is clear, but what you just described sounds just like a seizure.” That was our harsh induction into the world of epilepsy. Living in that world has been equally harsh.

Savannah’s seizures worsened despite treatment. By age three, she was having multiple types of seizure and had to wear a helmet. By age four, she began to have clusters of seizures that would last for hours unless drug intervention was used. By age five, she was seizing dozens of times a day, and delays in her development were becoming apparent. Savannah was diagnosed with Lennox-Gastaut Syndrome, a severe epilepsy with a poor prognosis. Despite dozens of tests though, no cause for Savannah’s seizures was ever found, and with no family history or precipitating event, we were mystified.

It has been devastating to watch what epilepsy has done to my child. With over 35,000 seizures in seventeen years, it has definitely left its mark. At twenty, Savannah is the developmental age of a five year old. Her face bears the scars from falls caused by seizures, and her heavy eyes tell of the medications she takes to “control” them. Due to these medications, she drools incessantly, is frequently constipated, has overgrown gums, staggers like a drunk, struggles to find words, and sports a not-so-feminine mustache. The first thing I do every morning before getting out of bed is place my hand on Savannah to see if she’s breathing. With frequent tonic-clonic seizures during sleep, I fear that one will claim her life, and one day she will be gone.

Because of her developmental delays, Savannah doesn’t fully realize how her life is different because of epilepsy. She has a childlike happiness, with an infectious giggle and the most loving soul I’ve ever met. But I know, and it torments me. She will forever be dependent on others for her well-being, and is prone to being taken advantage of by the dishonest. She must continue to take anticonvulsants despite side effects, because the alternative is much worse. She will continue to miss out and be excluded because of unrelenting seizures. And I will continue to live in fear of her death, but I expect that I will see it in my lifetime. What I want more than anything is a cure.

Sadly, there is no cure for Savannah. Perhaps, with maturity, she may stop seizing one day, but the damage is done. If only there had been something to help her in the beginning. My hope is that someday other children with epilepsy and their families won’t have to live the ordeal that we have, and so I’ve have chosen a career as a researcher.

During those early years of seizures and utter confusion, I began to read all I could about epilepsy. The papers I was reading were too advanced and I thought I needed to go to college to take some English classes. But, I soon learned that it wasn’t English I needed, but science. So I took my first science course and became completely enamored with the subject. I attended classes while my children were at school, and stayed up late to study.

Fifteen years later, I have a PhD in neurobiology and am an epilepsy researcher.

As both a mom and a scientist, I have a great respect for CURE. An organization that recognizes the ravage of epilepsy and takes an active role in the search for help, CURE has inspired hope among parents and dialogue among researchers about curing this exasperating disorder. CURE’s impact has, thus far, been significant, and I am honored to be a part of this group.

Update: About 18 months ago, things changed. We learned that Savannah had genetic mutations in numerous calcium channel genes and we knew from previous experience that calcium supplements made her seizures increase substantially. Therefore, her doctor wondered if using a calcium channel blocker might help her... and it did. For over two years Savannah would go into non-convulsive status epilepticus every 2-3 days and would require rectal diazepam to stop these non-stop seizures. In the last 18 months, Savannah has only needed emergency rectal medication 3 times. We are amazed! For the first time in more than 15 years, a medication is helping stop Savannah’s seizures. We are cautiously optimistic that our days of recurrent status epilepticus are behind us and we are hopeful that perhaps trying other types of calcium channel blockers will one day make her seizure-free. If you’re going to dream, dream big!

Robert’s Sister:  Please tell us what your involvement with your organization means to you.  Has this affected your own personal purpose? 

CURE, to me, is hope. I found CURE at a time my daughter had suffered over 18,000 seizures and failed 17 different treatments.  I had lost hope and felt utterly alone in our battle with epilepsy.  But then I met the mothers and fathers of CURE and my hope was renewed.  Here was a group of individuals, many who had children suffering from severe epilepsy as we were, who refused to give up without a fight.  They believe, as I do, that research is the key to helping patients with severe, unremitting seizures.  I began volunteering for CURE in 2006 and have never looked back!

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

We are truly grateful for the awareness you are creating with your blog.  It is so needed!!  Thank you!!!

Also, 93 cents of every dollar raised at CURE goes directly to research.  I love that!

Robert’s Sister:  Please tell us how we can contact and support your organization.     

CURE

430 W Erie Suite 210

Chicago IL, 60654

312-255-1801

www.CUREepilepsy.org

info@CUREepilepsy.org

Please view our GET INVOLVED page for the many ways you can support CURE and epilepsy research!

Robert’s Sister: My extreme thanks for your time and for all that you do!

I am still in awe of Tracy for getting a PhD in order to do learn as much as possible about epilepsy and to help her daughter and others with epilepsy. Can this woman get a Mother of the Year award, please?

Moments and Memories

Other Brother sent me a link to our dad’s house which is now for sale by the bank. Seeing just a few pictures of the house brought back flashes of memories of time spent at the house.  We didn’t grow up there – it was a house Dad had bought when we were all grown and he was marrying his third (or was it fourth?) wife for the first time (he married and divorced this same woman twice).

Dad's porch

Dad was Willy Loman, Rich Man/Poor Man and Jack Nicholson rolled into one.  His fortunes were always most certainly followed by losses so great he would call me for cigarette and Diet Pepsi money.

When Dad’s time ran out, his money had already run out months ahead of him. 

His house went back to the bank; his possessions were sold to help offset the cost of his funeral and the rest was either tossed or given away.

The pictures of this modest house which had been in a state of disarray when Dad died showed the bank had invested in new paint, new roof, new carpet and a bit of landscaping.

It didn’t look half bad.

The pictures also showed an empty house but with each click my mind filled in the blanks.

The kitchen was bright and cheery and probably didn’t smell of smoke since the drapes had been removed.  The dead plants in the corner near the sink could only be seen by me. 

His 20 year old refrigerator would have been filled with orange juice, Diet Pepsi, hot dogs, a mostly empty ketchup bottle, A-1 Sauce and leftover cooked noodles. Sometimes cans of beer and half empty bottles of wine. 

His freezer would have been packed with frozen meals, vegetables and meats and a variety of ice cream treats. The outside of the fridge would be covered with pictures of the kids and grandkids and their drawings as well as pictures of the children of a much younger woman who was only around during the times of fortune.

The cupboards held several years of Girl Scout cookies, cereal and crackers – mostly all expired.  The counters and stove were covered with a thin layer of grease, only removed when I visited since he had fired most housekeepers in town and those he hadn’t fired, knew to stay away. 

Birthday cakes had been cut and served on the island as had a Thanksgiving turkey or two.  On one of his birthdays, Dad had sat in a kitchen table chair and was adorned with a crown, a cape made from a blanket and confetti sprinkled on him by two of his young granddaughters. And then ventured out to a restaurant – still in costume – much to the delight of the girls.

The rest of the rooms of this empty, bank-owned house brought back as many memories.

In the family room, more pictures of the grandkids sat on the fireplace hearth and Christmas stockings hung half of the year. We got Robert settled on the couch after Dad’s funeral and he worked on his Word Search while dad’s older brother sat protectively next to him.

The living room was where Dad had sat years before telling me the FBI was spying on him; where he would sit and read or watch his gigantic television crammed into the little room because he thought the cable reception was better. It is also where Richard, Rachel and I found him only half awake and completely confused when his kidneys were failing him, only hours before he died.

This was also the room where his brothers and sister and Other Brother and I hung out, looking through pictures and telling stories after Dad had died.  

The front porch had been fixed and had a fresh coat of paint on it. Dad would call me from the front porch and tell me how he liked to put on his pajamas, lay down a blanket and sit on the porch watching people go by. I pictured him with his Diet Pepsi, cigarettes and wearing only his sweat pants staring at people as they walked by and wondered how long it would be before the police showed up.

This house held a few weddings – one or two of dad’s as well as that of Robert’s.  Robert was a young man in his twenties when he married a woman (who later turned out to be a thief) but on that day, Robert was happy. His smile was broad and he looked sharp in his tux. Other Brother and I were amazed at our little brother getting married since neither of us had thought this was in the cards for him. His marriage didn’t last much longer than the honeymoon but I will never forget the smile on Robert’s face before he went into the backyard to say his vows.

For a house I never dreamed would mean anything to me, it has filled my evening with memories of both good times and bad.  A few pictures of a non-descript house has filled my heart with love for a dad who was both exasperating and fascinating and who loved his family with all of his heart.

These few pictures have made me smile thinking of my daughters who are thoughtful and funny; brothers who I adore with all my heart and aunts and uncles who are thousands of miles away but as close to my heart as you can get.

The bank may get the house and they may recoup their investment since the market is improving but these memories – they don’t get those. 

Those are mine to keep and to remember with just a glance at a picture or two.

I Never Thought I Would . . .

It’s hard to believe my caregiving for Robert started five years ago. Before I became involved, our dad helped him with his finances.

Mother-in-law, Carol, with Robert

Which means when I took over caring for him I had to fix a lot of financial issues.

Caregiving for Robert has kind of crept up on me.

It started one Thanksgiving with Other Brother and I dealing with a homeless woman Robert and his companion brought home and who gave Robert a black eye. Around this same time, Robert was battling an infection and he was hospitalized a couple of times.

Other Brother visited him since he worked in the same city as Robert was hospitalized and I was in contact with his medical team.  Once he was discharged, I took Robert to a couple of doctor appointments. The infection kept returning and became life-threatening.

Then it was an avalanche of caregiving: a trip to the emergency room; emergency surgery; several weeks of IV antibiotics; discharge to a Skilled Nursing Facility; move to an Assisted Living Facility; a few more hospital visits – and that was all within four months.

Five years later, Richard (hubby) and I are caring for Robert full-time while he lives with us.

It is hard to believe all this has happened in five years.  It is also difficult to believe the things I do now that I never thought I would. 

This can only mean one things: it’s time for a list!

Before caregiving, I never thought I would . . .

• Be caregiver to Robert;

• Have a husband who was willing to help care for my disabled brother;

• Know so much about epilepsy (even though Robert has had it his entire life);

• Be strong enough to discuss Robert’s care and treatment options with his doctors;

• Be strong enough to stand up to an emergency room nurse who was giving Robert the wrong medication;

• Do so much laundry!;

• See Robert using a walker;

• See Robert making nurses laugh out loud with his jokes;

• See Robert live to middle-age;

• Spend more time with Robert than I do Other Brother (who I am much closer to);

• Be able to pronounce the slew of medications Robert is on. And be able to recognize them by sight;

• Mix water and juice with a powder so that it is “nectar thick;”

• Have so much Rocky Road Ice Cream in my freezer;

• Teach Robert how to be patient with a puppy;

• Give Robert a bath;

• Clean Robert after an accident. Every day. Sometimes several times a day;

• Watch my husband do the same;

• Enjoy Family Feud and Jeopardy as much as I do (shh! Don’t tell!);

• Know enough about Skilled Nursing Facilities and Assisted Living Facilities to help others;

• Did I mention all the laundry?;

• Wonder so much before going out if there will be an accessible bathroom;

• See my non-affectionate brother, Robert, hug my daughter when she visited recently;

• Wonder: Hey! Where’s my hug?!;

• Be a published author of a book about caregiving and family;

• Be an author of several articles on caregiving;

• Keep such an eagle eye on a cough and congestion – willing the bacteria to stay away;

• Make so many new friends who are all caring for someone with compassion and love or helping those who do;

• Give up my family room and downstairs bath to accommodate Robert;

• Slow down enough to let Robert participate in a conversation and answer questions;

• Fill so fulfilled from doing something I never had planned to do;

• Watch a beautiful friendship develop between Robert and my mother-in-law, Carol;

If you are a caregiver, what is something you never thought you would do?

Robert’s Sister Goes to the Movies: World War Z

On a recent weekend evening, Richard and I found ourselves caught up on the recordings on our DVR; the new season of our other favorite shows hadn’t yet started and no one was in the hospital.

Image credit: Amazon

Plus, we needed a distraction since Breaking Bad was down to the last episode or two and it wasn’t yet Sunday night. (Boy, I miss that show!) 

We decided to watch a movie and settled on World War Z. We hadn’t seen it in the theaters and it was available to rent right from our television. Not having to leave the house is an extra bonus for tired caregivers – goodness knows, I have been to CVS way too often lately in my sweats.

I hadn’t heard much about this movie but knew Brad Pitt was trying to save the world. That was just the sort of mindless distraction I needed!

Robert was settled in bed watching as many episodes of Family Feud as possible while simultaneously doing his word search puzzle.

I ran upstairs, grabbed the video monitor and set it on my bed to keep an eye on Robert. I snuggled in and the dogs followed suit: The puppy at my feet and Oz by my side, his head on my lap. Richard was standing doing his back stretches.

Oh crap, I forgot the cat.

Since Taz (The Crazy Puppy) is way more interested in Milky Way than Milky Way is in Taz, I wait until Taz turns into a Sleepy Puppy before giving Milky Way the all clear to come in and snuggle. 

“All clear” as in, I move Oz’s head off my lap, move the video monitor out of my way, get out of bed and go to the bedroom down the hall to get Milky Way. If I’m lucky I can sneak back in bed without Taz waking up and Milks can lay on one side of me, Oz on the other.

Okay. Now I’m ready.  Start the movie!

Oh, wait. I need some water. Hmm.  If I wait, Richard should be going downstairs any minute to get some water or a snack.

Waiting. Pet the cat. Pet Oz.  Rub my feet on Taz.

“I’m going downstairs. Do you want anything?”

Why, yes, honey! Thank you!  Could I have some water, please?

Richard returns upstairs with a bottle of water for each of us.

Time for the movie!

The alarm on my phone sounds. Argh! It is the last medicine time for Robert.

Okay, Milks has to move and I get up and go downstairs. I walk into the kitchen and Robert enthusiastically says, “Good evening, Trish!” (As if he hadn’t seen me for a week.)

Good evening, Robert! Here are your meds. It’s Saturday so you can stay up late watching TV if you want.

“Yes. Tomorrow is Sunday. I want to watch church.”

Yep, church will be recorded so you can still sleep in and watch it any time you want tomorrow. 

“Thank you.”

Okay, I’m going upstairs to watch a movie with Richard.

“Good night and God bless you.”

Good night, Robert. God bless you too.

“Tell Richard good night and God Bless Him too.”

Okay, hon. Good night.

“Tell Richard I love him.”

Um, okay. (What am I? Chopped liver?)

Love you, too, Robert.

“Love you and good night, Trish.”

There we go.

I’m starting to think I live in a house with John Boy.

Up the stairs I go, move the cat, crawl into bed, put the cat back down, scoot Oz over since he’s encroached on my space and yank the covers out from under him.

Now I’m ready.

I don’t know what to expect from “World War Z” other than Brad Pitt saves the world. I wonder what he is saving the world from and assume it is probably aliens.  The world is always in jeopardy because of aliens.

The movie starts with Brad Pitt in family-man mode which, for whatever reason, I find completely unbelievable.  I realize he has about 110 kids with Angelina Jolie but I think his portrayal of “dad” is unrealistic.

While mulling over why I don’t think Brad Pitt plays a realistic dad, I soon realize why the world is in jeopardy.  And it’s not helping the movie be any more realistic.

It’s because of Zombies. 

Ohhh, so that’s what the “Z” means! Gotcha. I get it now.

I’m going to have to let the “realistic” expectations go and just see where this movie takes us.  The problem I foresee is I am not much of a zombie fan or horror fan nor do I like to be scared. I do like suspense movies so decide to give this a chance. 

Plus, I kind of like that zombie in the phone commercials.  This could work out okay.

The movie was a little on the gross side but there was a lot of action and suspense. There were even a few heartwarming moments and one terrific (and terrifying) scene with Brad Pitt trying to outwit Michael Jenn playing a zombie in the World Health Organization lab. Wow. That guy really knows how to make a zombie seem realistic and disturbing. The teeth chattering alone was bone chilling.

I get the creeps just thinking about it.

The movie was surprisingly enjoyable and definitely kept me on the edge of my seat (or that could have been Oz stretching out and scooting me off the bed).

This would be a fun movie for caregivers and carees to watch together to see if the “Zs” take over the world. (And, no, I will not give away the ending!)

I do not recommend anyone watch this movie alone. (Advice that, sadly, comes a few days too late for my poor daughter.)

Surprisingly (probably only to me), the movie is rated PG-13.  I say surprisingly because I am easily scared but realize not everyone is such a scaredy-cat.  

“World War Z” was released in 2013 so it’s too soon for the purchase price to drop but if you like to be scared and watching zombies is your thing, you can purchase it for $16.99 on Amazon. We only paid around $4.99 for the rental which was just perfect for a movie night at home (where I can wear my sweats without worry). The teeth chattering zombie scene alone was worth the price!

“World War Z” gets three out of five scoops of Rocky Road Ice Cream from Robert’s Sister. Which actually sounds pretty good right about now – I need some help getting the images of those zombies out of my head.