Atlas of Caregiving

Last fall, I wrote about Richard, Robert and I participating in a caregiving study about our caregiving day.

Robert's View: Part of his grooming routine

It was conducted by Rajiv Mehta, Board member of Family Caregiver Alliance and Principal Investigator for Atlas of Caregiving and Dawn Nafus, his partner for the study.

Robert has volunteered for studies his entire life – for medication, the Vagus Nerve Stimulator, the Deep Brain Stimulator – anything that might help him and others with uncontrolled epilepsy.  Robert was more than willing to participate in this study about caregivers and we were excited as well.

Rajiv and Dawn made it very easy and even though it sounds like it would be intrusive (cameras, home monitoring devices, keeping a log of activities), it really wasn’t.  We quickly forgot about the cameras and went about our caregiving day. 

Robert's View: Watching Trish organize his weekly meds

As I wrote in September, the dozens of interruptions throughout our caregiving day is mind-boggling! Caregivers know this but until I saw it on paper I did not really realize the extent of how much we juggle between (and in spite of) the interruptions. 

Fourteen families participated in this study and each one is a fascinating and eye-opening read. The results of this pilot program are out and can be read here.  (Our story is here.) 

Robert's View: Richard waiting for Robert

If you are not a caregiver, I encourage you to read each and every one of these stories to get a sense of the vast amount of caregiving being done. If you are a caregiver, you will definitely relate to these stories!

On a personal note, I would like to thank Rajiv, Dawn and Celine Takatsuno (who we have worked with throughout the publishing process).  They are doing great things for caregivers and truly care about our day and what would help make our day a little easier.

We all need that extra help and support in our busy, crazy caregiving days.

Trish's View: Helping Robert

Epilepsy Awareness Month: CTE and Epilepsy – Making the Connection

The connection between blows to the head (even those not resulting in a concussion) and Chronic Traumatic Encephalopathy (CTE) is clear thanks to the persistence, innovation and research of Dr. Bennet Omalu, a forensic pathologist and the doctor who wrote the book, “Play Hard, Die Young: Football Dementia, Depression and Death.”

CTE is quite the hot topic right now because of the number of high profile NFL players confirmed to have CTE (including Junior Seau) and the NFL finally recognizing the dangers of repeated concussions. It doesn’t hurt to have Will Smith releasing a new movie, “Concussion”, which is based on Dr. Omalu’s work.

What exactly is CTE?

The UC Davis Medical Center (a university at which Dr. Omalu is part of the faculty) describes CTE as a “progressive, degenerative disease that results from repetitive brain trauma that can only be definitively diagnosed after death.”   CTE cannot be confirmed until a post-mortem brain analysis checks for tau proteins but brain imaging while the person is alive can be reviewed for “markers” of the tau protein. Interestingly, tau protein is “an abnormal protein common in the brains of elderly Alzheimer’s patients.”

The CTE Center at Boston University describes the symptoms of CTE as including “memory loss, confusion, impaired judgment, impulse control problems, aggression, depression, anxiety, suicidality, parkinsonism and, eventually, progressive dementia.”

Robert has (or has had) every single one of those symptoms.

I am convinced there is a link between CTE and epilepsy.

I am no scientist. Heck, I couldn’t even take biology because I refused to dissect a frog. But I am pretty good at observation. And research. And taking notes. And being pretty darn persistent.

I know what Robert was like as a child. His motor and verbal skills were perfectly normal. He had trouble in school but mainly because he missed quite a bit of it because of doctor appointments and medications and seizures and he also was diagnosed with ADD (probably ADHD, now that I think about it).

Robert grew up on a variety of anti-seizure medications and did not wear a helmet until he was well into his twenties and continued to have uncontrolled seizures and falls.

There were a lot of head injuries and concussions. He had numerous falls resulting in all kinds of injuries (including a near-drowning) and more head injuries than any of us could count.

Robert’s head injuries alone could be the reason for the symptoms he now has.  The depression and attempted suicide Robert experienced as a teenager could have been the result of medications or epilepsy.  Or was it CTE?

More than a year ago, Robert was hospitalized for a few weeks because he could not use his legs. At the time, he was using a walker and we had to make the switch to a wheelchair. He quickly lost the ability to even transfer from the wheelchair to the bed or to another seat. He was sleeping constantly. He was very, very sick and his neurologist thought he might have “cervical disk disease with myelopathy.”  A CT scan showed he does have that but while in the hospital, the neurologist on rotation also diagnosed him with Parkinsonism. I asked about CTE and she agreed with me about seeing the symptoms.

Let’s include epilepsy in the discussion about CTE.

What if the falls and head injuries are not the only contributing factor to CTE?

What if the uncontrolled seizures are causing CTE?

What if the depression associated with epilepsy is actually because of CTE?

What if epilepsy itself is a cause of CTE? 

When I broached the subject with Robert’s Neuro Nurse Practitioner, she thought these were great questions. The neurologist, probably playing devil’s advocate, asked something to the effect of what good it would do to know whether epilepsy can result in CTE.

My answer:  PLENTY!!!

If there is a connection between epilepsy and CTE then the research can move in a whole new direction, possibly finding new medications and treatments for epilepsy.

If that is not reason enough, then consider:

If there is a connection between epilepsy and CTE, parents may be more inclined to make their kids wear a helmet. Our parents did not make Robert wear a helmet because he didn’t like it – it made him look different. (Keep in mind, this was before kids even wore helmets to wear a bike or before motorcycle helmets were required.)

If there is a connection . . . helmet technology would have even more reason to improve! Let’s make more improved helmets to better protect those precious brains during a fall.

If there is a connection . . . there is even more reason to strive for a cure. To reach 100% seizure control. If uncontrolled seizures can take Robert from a lively, outgoing, mobile rascal of a kid to a depressed teenager to a 50 year old who cannot remember what he did earlier in the day, then it can happen to others with uncontrolled seizures too.

If there is a connection . . . the availability of caregiver resources and respite will need to rise to the occasion. If we, as caregivers, are managing the health and well-being of a person with uncontrolled epilepsy and know that in the future there will be more and more care needed, then we have to be prepared. I would have loved to have known that Robert’s steep decline was just ahead as I began to care for him. Not because I would have refused to take on the job but because I would then know what I was in for and could plan for it.

If there is a connection . . . the availability of social services will need to increase. Day Programs and social service agencies handling an increasingly needy population will be understaffed and underfunded if we do not recognize the decline in people with uncontrolled epilepsy. These agencies are already understaffed and underfunded but gathering data about the impending increased needs of consumers will allow these agencies to plan for it.

If there is a connection . . . research will have to improve and become better funded. There is already an enormous burden on the healthcare system to care for the chronically ill, disabled and elderly. Robert’s care is paid for by Medicare and Medi-Cal – I know the extraordinary costs associated with his care and know the government (and, frankly, the people) are paying for it. Multiply his costs by a million (a third of those with epilepsy do not have seizure control) and the numbers are . . . , well, ridiculous. (I am not a mathematician either.) 

I am not trying to alarm anyone who has uncontrolled seizures or who is caring for someone with uncontrolled seizures.

I understand no one wants to talk about the long-term effects of uncontrolled epilepsy. We want to be in the category of those with epilepsy living long, productive lives. The long-term effects can be scary as hell.

However, just as many people don’t realize SUDEP is a very real risk from uncontrolled seizures, a possible link between epilepsy and CTE needs to be discussed and researched.

Let’s at least include epilepsy in the discussion of CTE. Let’s do some research to see where this takes us.

Let’s give families another reason to find a cure for epilepsy and to get the support and help they need in treating epilepsy.

Let’s not be alarmed – let’s do something about it.

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?