Stacia Kalinoski and her mother, Barbara

ILAE Caregiver Series: Parents of Adults with Epilepsy: Caregiving without a Net

Barbara Kalinoski takes charge of things. She’s been chair of the school board, President of the Laurentian Lakes Chapter of the North Country Trail Association, Director of the Northwest Regional Library, and President of the Minnesota Library Association.

But when the oldest of Barbara’s four children began having seizures in college in 2005, Barbara couldn’t exactly take charge. Stacia was a legal adult who could make her own medical decisions. Though Barbara came to medical appointments, she wasn’t involved — not the way she would have been, had her daughter been a few years younger.

I need to know

“Being a parent of an adult child with epilepsy is a whole different ballgame,” said Barbara. “I didn’t receive any information from the doctors. I had to find it on my own.”

If anyone could find it, Barbara could; she’d been in library administration for decades, and information was her lifeblood. But the internet in 2005 was a mere shadow of what it is today. Barbara and her husband Greg were frustrated by what they found — or rather, what they didn’t find.

“The information was really difficult to find, and what I found wasn’t helpful at all,” Barbara recalled.

Stacia was in college six hours from home, but Barbara drove to each appointment to offer support and gather any information she could. Stacia wasn’t officially diagnosed with epilepsy, but she was prescribed an anti-epileptic medication. Barbara remembers that the side effects were such that Stacia tended not to take it regularly; this worried her. But she couldn’t force her daughter to take her medicine as directed.

Years later, Stacia called her parents with a formal diagnosis: mesial temporal sclerosis. This didn’t surprise Barbara; since Stacia’s first seizure, Barbara was almost sure that her daughter had epilepsy. Barbara had some experience with epilepsy; she knew someone who had the condition, and had witnessed a few seizures.

Barbara also knew about some of the challenges her acquaintance faced every day, both in the workplace and in life in general. So when Barbara imagined what her daughter’s future might be like, some of it frightened her.

Epilepsy Survey Gives Voice to Patients in Setting Their Research Priorities

EpLink – the Epilepsy Research Program of the Ontario Brain Institute (OBI), in collaboration with the James Lind Alliance and the Ontario Brain Institute, announced the launch of an online survey to work directly with patients, caregivers, and clinicians to better identify research priorities around epilepsy and seizures.

This project, also known as a Priority Setting Partnership (PSP), is the first such initiative for epilepsy in Canada. The PSP is being led by EpLink, and funded by OBI, in a partnership with the James Lind Alliance, a UK-based non-profit that sets health research priorities. The outcome of this PSP will be a “Top 10” list of research questions that will serve to guide researchers and funding agencies. Patients, caregivers and clinicians will use the survey results to compile this list and prioritise which questions are the most important for research to address.

“There are still many aspects of epilepsy and seizures that we don’t fully understand, which can pull research in many different directions,” said Dr. Jorge Burneo, Chair of the Epilepsy PSP Steering Committee and Epileptologist at Western University. “By collecting the questions of people in the epilepsy community, we can focus our work on answering the questions that are the most meaningful to the people who benefit from our research, which as a result will serve to help clinicians provide better care, and improve the lives of patients and their caregivers.”

Hailey Scheinman

Epilepsy and Caregiver Stress: How One Family Counters Stress by Giving Back

For people with epilepsy, seizures affect almost every aspect of their lives. The seizures also affect their caregivers’ lives, with impacts on physical health, emotional functioning, social relationships, employment and finances. Caregivers are at risk for post-traumatic stress, anxiety and depression.

Here’s how one family works to channel their stress and frustration into helping others.

Olivia (Livy) Scheinman has been having seizures since she was only a few hours old. Now 14, Livy has undergone multiple surgeries but must continue to take several anti-epilepsy medications. And she still has seizures.

“We’ve gone through 14 medications,” said her father, Jon. “They work for a certain period of time and then they stop working. That means at some point you have to drop everything and start going to the hospital. It puts life on hold.”

Be the change

“Livy has other disabilities as well, so that compounds the stress,” Jon said. “We’ve been fortunate that she hasn’t had to be in the hospital for the past 5 or 6 years, but we still deal with daily seizures, medication schedules, doctors’ appointments. There’s plenty of stress and sleep deprivation.”

Jon and his family have worked to channel their stress into a positive outlet: helping others. Livy’s twin sister Hailey seems to have led the charge.

Support systems

Hailey uses music to relieve stress. “I have a group of songs I listen to that are calming,” she said. “I also like watching movies and TV shows.”

Jon turns to exercise. “Physical fitness is one of my things, and it helps release a lot of stress,” he said. “I love cooking too… when I was in the hospital [with Livy] I’d look out the window and think about eating a great dinner. I’d think about the things I’d rather be doing.”

$1.66 Million Grant to Help Michigan Children with Epilepsy

Michigan children with epilepsy will see improved outcomes through expanded services funded by a $1.66 million grant that the Michigan Department of Health and Human Services (MDHHS) has received.

The 4-year-grant for $416,000 annually from the Health Resources and Services Administration’s Maternal Child and Health Systems Branch will fund the Michigan Pediatric Epilepsy Project.

The focus of the grant is to improve health outcomes for children and youth with epilepsy, especially those in Michigan’s rural and medically underserved areas. This grant enables the Michigan Children’s Special Health Care Services Division to expand upon current efforts to improve access to specialized pediatric epilepsy services.

“This new funding opportunity provides greater access to comprehensive services for children, youth and their families living with epilepsy,” said MDHHS Director Robert Gordon. “By partnering with four of the major epilepsy centers in Michigan – Beaumont Children’s hospital, Children’s Hospital of Michigan, Helen DeVos Children’s Hospital, and Mercy Health Hauenstein Neurosciences – epilepsy patients and their families will have better access to specialty care and more successful transitions to adult specialists to effectively manage their epilepsy.”

FutureNeuro and S3 Connected Health Adopt Co-Design Approach to Epilepsy Treatment

FutureNeuro has announced plans to work with S3 Connected Health to enable epilepsy sufferers to ‘co-design’ solutions for managing their condition.

Assessing barriers is the first step to successfully adopting a tailored e-health solution. As such, FutureNeuro and S3 will work with sufferers, their families, carers, healthcare providers, and policy makers to understand the barriers and enablers associated with e-health adoption.

Behavioral factors impact how patients and clinicians use technology solutions. By examining these factors, S3 Connected Health can tailor its digital therapy management and patient engagement platform, Affinial, to improve care.

Announcing the 2019 UCB Family Epilepsy Scholarship Winners and the Addition of 6 New Scholarships

UCB has announced that 38 recipients were awarded the 2019 UCB Family Epilepsy Scholarship. This year’s UCB Family Epilepsy Scholarship program includes six additional awards. UCB awarded a $10,000 Joe D’Souza Memorial Scholarship along with five additional $5,000 scholarships for 2019.

Of the awardees, nearly half are graduating high school seniors with the other half currently enrolled in undergraduate or graduate programs. This year’s winners will begin the academic year this fall at 33 schools across the country where awards will support their continued education, with 18 winners planning to enter the healthcare field. Hailing from 21 states, this diverse group of passionate advocates includes people living with epilepsy or caregiving for someone living with epilepsy, including parents and siblings.

Meet the 2019 Class of CURE Scholars!

Introducing our 2019 Education Enrichment Fund scholars! All 10 remarkable students have all been personally impacted by epilepsy and will together receive nearly $50,000 to advance their education while bringing greater awareness to epilepsy.

The EEF Scholarships—made possible by generous support from Lundbeck—award one-time scholarships (up to $5,000) to those living with epilepsy, or family members and caregivers of those impacted by the condition. The scholarship, which is in its fourth year, covers tuition, books, and academic materials and supports coursework advancing personal knowledge in research, health education, and advocacy in relation to epilepsy.

Ana-Sophia Beardsley
Asbury University

After being diagnosed with epilepsy as a teenager, Ana-Sophia searched for a way to process her emotions while connecting with other teens impacted by this condition. When she couldn’t find these resources and ways to connect, she took action, speaking out about her epilepsy and actively work to build a network of teens dealing with the same thoughts and emotions.

Ana-Sophia will use her scholarship to continue learning how to develop a community through writing.

Read Ana-Sophia’s Story

Emma Cardwell
Middlebury College

Emma’s sister, Abby, was diagnosed with epilepsy at the age of 2. The cause of Abby’s epilepsy is unknown, and she continues to battle seizures and struggle with side effects from medication. Seeing the way Abby has been impacted by epilepsy sparked Emma’s interest in neuroscience and passion to make a difference. Currently, Emma is interning with Dr. Sunita Misra in Chicago and researching what genetic and brain MRI abnormalities predispose a patient to Lennox-Gastaut syndrome (LGS).

Emma is determined to help further the search for a cure by studying epilepsy genetics.

Read Emma’s Story

Emma Cardwell

Connie Chang-Chien
Johns Hopkins University

In 2018, Connie was diagnosed with Stage 2 brain cancer and epilepsy. Her recovery has included medications, MRI scans, oncologists, neurosurgeons, neurologists, and two brain surgeries. The balance between her health and academic excellence at times presented challenges, but Connie met these challenges with eagerness and determination.

Connie will work toward a degree in Molecular and Cellular Biology and Public Health, in the hopes of helping patients find the best way to treat their conditions while educating the public about epilepsy.

Read Connie’s Story

Emma Lipkowski
Rose-Hulman Institute of Technology

Emma’s brother has been diagnosed with Idiopathic Generalized Epilepsy. His condition impacts all aspects of his life and seeing this has inspired Emma to devote her studies to creating change. She hopes to create life-saving technologies through research.

Emma will use her scholarship to study how to use artificial intelligence and nanotechnology to analyze epileptic brain activity and predict the onset of seizures.

Read Emma’s Story

Emma Lipkowski

Gillian Mangan
University of Alabama at Birmingham

As a teenager, Gillian was diagnosed with petit mal epilepsy, which later evolved into grand mal epilepsy. She turned to blogging and photography to cope with her condition, meeting a community of others impacted by chronic conditions. She aspires to use her education to help others find that critical human connection.

Gillian will be pursuing a Master of Science Degree in Healthcare Administration, where she will research how to advance telemedicine and treatment centers for chronic illnesses.

Read Gillian’s Story

Gillian Mangan

Miriah Mayhugh
Pikes Peak Community College

Being diagnosed with epilepsy at the age of 7, this condition has been a constant in Miriah’s life. While she is two years seizure-free, she describes getting to this point as a “wild ride” which has sparked her passion for nursing.

Miriah is using her scholarship to support her dreams of becoming a pediatric nurse, specializing in childhood epilepsy.

Read Miriah’s Story

Mariah Mayhugh

Sasha Pina
Institute of Health Science

Sasha developed drug resistant post-traumatic epilepsy 10 months after receiving a traumatic brain injury during a soccer game. Her diagnosis opened Sasha’s eyes to how people with different challenges are treated, and her mission is to educate others about epilepsy, seizure first aid, and SUDEP.

Sasha completed a nursing assistant program and will use this scholarship to continue her education. She hopes to become an EEG technician, while raising awareness about brain injuries.

Read Sasha’s Story

Sasha Pina

Sara Sheridan
Columbia Journalism School

Sara’s passion for writing began with her epilepsy diagnosis. She used writing to process her thoughts and emotions, eventually dedicating herself to journalism. Since then, she has worked for the UN, traveled the world, and worked to amplify the voices of others impacted by epilepsy.

Sara is pursuing her master’s degree in journalism, with the goal of becoming agent of hope for the epilepsy community.

Read Sara’s Story

Sara Sheridan

Kelli Stanley
Charleston Southern University

In 2005, Kelli’s sister, Emily, was diagnosed with Dravet syndrome, beginning both of their journeys with epilepsy. Kelli has always played a major role in Emily’s care and is now her second guardian. Due to Kelli’s close relationship with Emily’s doctors, nurses, and therapists, she became interested in the medical field, volunteering at free clinics and becoming a certified EMT.

Kelli is enrolled in a Physician Assistant program and is interested in a career in neurology or psychology. She wants to practice in rural settings where primary care is often limited.

Read Kelli’s Story

Kelli Stanley

Clare Tyler
University of Brighton

After struggling to gain seizure control for a decade, Clare found Keppra and then the ketogenic diet. The dietary therapy fascinated her, and she dedicated herself to learning as much as she could about its mechanism of action. Eventually this led Clare to CURE’s Day of Science event, which opened doors for her. She began working in the labs of CURE grantees Dr. Judy Liu and Dr. Kevin Staley during college, forming and testing hypotheses based on their work.

Clare’s dream is to become an epilepsy researcher and clinician to help patients in as many ways as she can while continuing to explore her passion for research.

Read Clare’s Story

 

Essay: My Childhood Seizures Could Have Been Terrifying, but My Dad Made It OK

When I was little, my dad explained my seizures to me using the vocabulary of electrical circuits.

“Your brain is like a light,” he said. “Most of the time it is on. Sometimes it turns off.” I was 6 and just tall enough to reach the switch plate by the bathroom door. “Those times when it is off,” he continued, “those are the seizures.”

I liked this explanation. Over coloring books and crayons, this became the way I described what a seizure was to my friends. My brain had a light switch, unambiguous and predictable. And cool. Something about having a brain that worked differently felt very cool.

As a child, I learned from my dad’s analogy that my seizures were not something to be afraid of. Lights were normal. They were everywhere. Once you learn how to operate a lamp, you never need to worry about getting lost in the dark. And so I approached the seizures with curiosity rather than fear.

‘Significant Help’: Experts, Community Laud Launch of National Epilepsy Helpline in Australia

Larissa Ryan has lived with epilepsy since she was eight years old. While she has a job and has been able to travel the world, Ms Ryan said her epilepsy remains unpredictable, which can be a problem.

“The frequency of the seizures, the intensity of the seizures and the impact and the uncertainty that has on my daily life is something that can be very scary for my kids, that uncertainty of not knowing what can happen,” she said.

Now, a new service aims to help Ms. Ryan and the 250,000 other Australians living with epilepsy. Launched on Tuesday, the Epilepsy Nurse Line provides access to nurses trained in epilepsy treatment between the hours of 9am and 5pm, seven days a week.

The director of comprehensive epilepsy services at Sydney’s Royal Prince Alfred Hospital, Associate Professor Armin Nikpour said epilepsy is a “very varied disease” and it is hard for patients to get information that is specific to their condition and experiences.

Carol Ireland, chief executive of Epilepsy Action Australia, said the federal government is providing $1.3 million in funding for the service over three years. This year’s funding went to training the 30 specialised nurses and setting up the service, and the rest will go to maintaining the helpline over the next couple of years.

“Once we start to advertise that there is such a service, then we expect we will get many more calls than we’ve been getting and that obviously increases the cost of the service,” she said.

When It Looks Like Dementia But Isn’t: Epilepsy Not Just a “Children’s Disease”

Last September, Guy Bradley began having episodes of severe and sudden confusion with night sweats and nausea.

“He’d wake up and not know where he was or what day it was,” said his wife, Harriet.

Also troubling: the 69-year old suddenly could not find his way around the golf course he’d played all his adult life.

With each of the four episodes, Harriet and Guy would head to the closest emergency room. Each time, the diagnosis was scary – and yet didn’t quite fit.

Dr. Terry O’Neill, Guy’s UK primary care physician, ordered an EEG to look at the electrical activity in Guy’s brain.  The next day, Guy and Harriet met with neuropsychologist Lisa Koehl, Ph.D., for a neurodiagnostic consultation. Koehl referred Guy to epileptologist Dr. Ima Ebong at KNI, who prescribed anti-seizure medications. KNI is certified by the NAEC as a Level 4 Epilepsy Center, which means patients have access to all the latest treatments, medical and surgical, with a higher degree of coordination among disciplines.

“KNI has the perfect integration of multiple specialties that’s truly unique in Lexington,” Ebong said.

Ebong says that seizures in most elderly patients can be controlled with anti-seizure medications, although this demographic needs careful attention to dosing, particularly in light of potential interactions with other prescribed medicines (almost 40 percent of patients aged 65+ take five or more medications).