Neurological Disorders

A Mediaplanet Guide to Neurological Health and Treatment

Neurological Disorders

Camila Coelho The influencer explains why she shared her epilepsy story with her followers What people with Parkinson’s need to consider during the COVID-19 pandemic ONLINE: When should you send your child with a neurological condition back to school?

SEPTEMBER 2020 | FUTUREOFPERSONALHEALTH.COM

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How One Doctor Built a World-Class Epilepsy Program in California’s Central Valley Since 2016, Dr. Cesar Santos and the Valley Children’s neuroscience team have been bringing worldclass, innovative care to children in California’s Central Valley. Here’s how he brought the program to the forefront of neuroscience.

Over the course of his 30-year career as a pediatric neurologist, Dr. Cesar Santos became well-recognized for his medical expertise and teaching abilities.

As a professor and chief of the Division of Pediatric Neurology at the Georgetown University School of Medicine, he accrued several awards, including Teacher of the Year for 2011-12. He also ranked among America’s Top Doctors each year from 2010 to 2015.

But in 2016, Dr. Santos felt it was time to move on to a new challenge.

“I had narrowed my search to four places,” he said. “Valley Children’s was the fırst place I went, and it was clearly different. I knew it was the place for me and canceled the rest of my interviews.”

In Valley Children’s, Dr. Santos saw immense quality and potential, and recognized an opportunity to further develop the hospital’s neuroscience program, including its epilepsy center.

Since his arrival, Valley Children’s has made great strides, including achieving national recognition as a Level 4 epilepsy center and a Best Children’s Hospital, according to Neurology & Neurosurgery

by U.S. News & World Report. Valley Children’s has also advanced the use of robotic technology in surgery, leading to reduced operating time and eliminating the need for some invasive procedures.

This has been paid for by Valley Children’s Healthcare.

Jordan King, Valley Children’s Healthcare

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How Patients and Doctors Benefit From Teleneurology The COVID-19 pandemic has disrupted lives on a global scale and forced innumerable changes in the delivery of healthcare, which have occurred on a very compressed timeline with signifıcant improvisation and creativity. Telemedicine holds the promise of being able to increase access to healthcare for patients in underserved areas.

Before the pandemic, many institutions struggled with the logistical and regulatory barriers of deploying telemedicine. The COVID-19 crisis empowered the Centers for Medicare & Medicaid Services to relax rules over the use of, and reimbursement for, telemedicine services for Medicare recipients (formerly only covered for patients in rural areas).

Following the pandemic, enacting either a national licensing practice or removing state-to-state practice barriers is necessary. Enabling permanent changes at the federal and state levels will allow neurologists to better care for an increasingly aging population efficiently, conveniently, and safely, both during and after the COVID-19 crisis.

The value of telemedicine Using telemedicine, I’ve given

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a new diagnosis of MS to several patients and treated new onset seizures and concussions.

Creative solutions have been developed to allow clinicians to perform many parts of the neurological examination. While telemedicine can substitute for many ambulatory visits, of course it is no replacement for emergency care in the case of serious injury, heart attack, or stroke.

For patients with neurological disorders that affect mobility — for example, stroke, Parkinson’s disease, and neuromuscular disorders — telemedicine represents an opportunity for in-home visits and avoids the need for burdensome and potentially unnecessary travel to a distant clinic. An added advantage of a telemedicine visit is that the neurologist can see the home environment and conduct a survey of potential safety issues.

We need to ensure all of our patients can receive the neurological care they need, whether in person or via telemedicine.

Bridging the “digital divide” will require significant investment in broadband access both in rural and low-income urban areas.

The next generation of teleneurology may actually be employed through the use of kiosks placed in pharmacies or

retail spaces. Other platforms include devices equipped with BP cuffs, high-resolution cameras, and even retinal photography.

Beyond COVID Even before COVID-19, telemedicine had been shown to be a feasible strategy for the remote recruitment, enrollment, treatment, and evaluation of patients with neurological disorders. Safety monitoring can be integrated into telemedicine platforms in a relatively straightforward manner. Telemedicine also holds the promise to reduce access barriers to neurological clinical trials for people of color who have not enrolled in research proportionate to demographics.

Telemedicine isn’t without its challenges, but the ability to continue to provide care and conduct clinical research remotely means all patients who need care can continue to receive it in a safe and convenient manner.

Overall, we are seeing remarkable progress in the fields of neurology and neuroscience, and there are even more breakthrough treatments and technologies on the horizon.

Justin C. McArthur, MBBS, MPH, President, American Neurological Association, Director, Johns Hopkins Department of Neurology

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Publisher Victoria Borkowski Managing Director Luciana Olson Lead Designer Tiffany Pryor Designer Lee Miller Lead Editor Mina Fanous Copy Editor Dustin Brennan Director of Sales Stephanie King Director of Product Faye Godfrey Cover Photo Raul Romo All photos are credited to Getty Images unless otherwise specifıed. This section was created by Mediaplanet and did not involve USA Today.

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Although Veronica takes BRIVIACT for partial-onset seizures, BRIVIACT is not an approved treatment for seizure clusters.

One Woman’s Journey Through the Ups and Downs of Her Epilepsy Veronica C. shares her epilepsy journey of revelation and awareness.

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pilepsy, one of the more common neurological diseases, in which abnormal brain activity results in seizures, may be even more common than you realize.1 In fact, approximately 1 in 26 people may develop epilepsy at some point during their lives, but it can manifest in many different ways.1 Veronica C.*, an advocate for people living with epilepsy, is no stranger to the disease; she had her first seizure when she was just 13. Decades later, she was shocked to discover she still had more to learn when she first heard about seizure clusters while attending a symposium at the American Epilepsy Society (AES) conference. “It was almost like the person speaking was talking about me,” she says. Seizure clusters are periods of increased seizure activity (two or more seizures in a 24-hour period) that are different than your usual seizure pattern.2,3

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Veronica’s journey “So much of my life is based around my health,” Veronica notes. “I was on five different medications between the ages of 14 and 18, but my seizures weren’t well-controlled.

I didn’t want my friends to know. I kept my diagnosis to myself.” Because there is a stigma associated with epilepsy, some people will try to refrain from sharing their condition or even try to deny having it.1 She switched medications whenever they stopped reducing the number of her seizures, and even considered brain surgery. “There were times when my seizures were so strong, I didn’t think I’d live long enough to graduate,” she says. Her doctor suggested she enroll in a clinical trial, where she found a medication that helped — and received her inspiration to work as an advocate.

Then the stress of a new job began to trigger her epilepsy, specifically partial-on-

set seizures wherein the abnormal electrical activity begins in only one region of the brain.1 At that point, she began taking BRIVIACT® (brivaracetam) CV, which was effective in reducing the frequency of her partial-onset seizures.

Seizure clusters Until that fateful day at the AES conference, Veronica wasn’t aware of seizure clusters. “Somehow my mom can always tell when I’m having absence seizures,” she notes.

An absence seizure is a type of generalized seizure that involves brief staring spells.1 “Once when we were talking, she said, ‘Do you realize you just had seven seizures in the hour we’ve spoken?’”

Seizure clusters vary from one person to the next and can be extremely disruptive. 3-5 People experiencing them often don’t know when they might happen, or when they will stop,4-6 and they can lead to injury or even hospitaliza-

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tion.7,8 They also don’t know how many seizures they will have — they just know there will be multiple.4,5 At the symposium, Veronica suspected she’d been experiencing seizure clusters. “It just hit me — especially when they mentioned absence seizures back-to-back,” she says, thinking of her conversation with her mom. After the symposium, Veronica took the initiative to speak to her epileptologist (a neurologist who specializes in epilepsy) about the symptoms that made her suspicious she was experiencing seizure clusters — something all patients should do if they suspect they are having seizure clusters.

Veronica is still working with her doctor to address the frequency of her seizures. If diagnosed with seizure clusters, treatment may include a rescue medication as needed.

Treating seizure clusters may include being prescribed a rescue medication in addition to daily medications.9-11

Advice Managing her partial-onset seizures with BRIVIACT and learning about seizure clusters has encouraged Veronica to keep working as an advocate for everyone living with epilepsy. Her advice for others is based on her own experience.

“Start doing research on your own,” she says. “And seizure tracking does make a difference,” she adds, noting that she uses a combination of a smartphone app and handwritten notes to do so.

In college, Veronica decided against going to graduate school because of the severity of her seizures, but her journey of living with epilepsy has inspired her. “If you told me years ago that epilepsy would be the reason why I would go back and get my master’s degree, I wouldn’t have believed you,” she says. “If you told me that seizures would inspire me to go to work as a fundraiser and advocate, I would have said, ‘No way!’ But you never know where the things that happen to you in this life will lead you. That’s why I’m here today, sharing my story. I wouldn’t say I’m fearless, but it’s changed my level of fear. Today I feel strong enough to deal with whatever happens.”

Jeff Somers

BRIVIACT® (brivaracetam) CV is a prescription medicine that can be used to treat partial-onset seizures in people 4 years of age and older.

Please see the following BRIVIACT Important Safety Information.

To learn more about partial-onset seizures, visit BRIVIACT.com. To learn more about seizure clusters and how a rescue medication may be able to help, visit nasalspraytreatment.com. *VERONICA C. IS AN EPILEPSY ADVOCATE FOR UCB. BRIVIACT® AND UCBCARES ® ARE REGISTERED TRADEMARKS OF THE UCB GROUP OF COMPANIES. ©2020 UCB, INC., SMYRNA, GA 30080. ALL RIGHTS RESERVED. US-P-BR-EPOS-2000127 4

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IMPORTANT SAFETY INFORMATION What is BRIVIACT? BRIVIACT® (brivaracetam) CV is a prescription medicine used to treat partial-onset seizures in people 4 years of age and older.

• It is not known if BRIVIACT injection is safe for use in children.

• Children 4 years of age and older should only take BRIVIACT by mouth.

• BRIVIACT injection is only for use in people 16 years of age and older and may be given in the vein (intravenously) when BRIVIACT is not able to be taken by mouth.

It is not known if BRIVIACT is safe and effective in children younger than 4 years of age.

What is the most important information I should know about BRIVIACT? BRIVIACT is a federally controlled substance (CV) because it can be abused or lead to dependence. Keep BRIVIACT in a safe place to prevent misuse and abuse. Selling or giving away BRIVIACT may harm others and is against the law.

Like other antiepileptic drugs, BRIVIACT may cause suicidal thoughts or actions in a very small number of people, about 1 in 500 people taking it.

Call a healthcare provider right away if you have any of these symptoms, especially if they are new, worse, or worry you: • thoughts about suicide or dying • attempts to commit suicide • new or worse depression • new or worse anxiety • feeling agitated or restless • panic attacks • trouble sleeping (insomnia) • new or worse irritability • acting aggressive, feeling angry, or being violent • acting on dangerous impulses • an extreme increase in activity and talking (mania) • other unusual changes in behavior or mood Do not stop BRIVIACT without first talking to a healthcare provider.

• Stopping BRIVIACT suddenly can cause serious problems.

• Stopping a seizure medicine suddenly can cause seizures that will not stop (status epilepticus).

Who should not take BRIVIACT? Do not take BRIVIACT if you are allergic to brivaracetam or any of the inactive ingredients in BRIVIACT. What should I tell my healthcare provider before starting BRIVIACT? Before taking BRIVIACT, tell your healthcare provider about all of your medical conditions, including if you: • have or have had depression, mood problems, or suicidal thoughts or behavior • have liver problems • have abused or been dependent on prescription medicines, street drugs, or alcohol • have any other medical problems • are pregnant or plan to become pregnant. It is not known if BRIVIACT will harm your unborn baby.

• are breastfeeding or plan to breastfeed. It is not known if BRIVIACT passes into your breast milk.

What should I avoid while taking BRIVIACT? Do not drive or operate heavy machinery until you know how BRIVIACT affects you. BRIVIACT may cause drowsiness, tiredness, dizziness, and problems with your balance and coordination.

What are the possible side effects of BRIVIACT? BRIVIACT may cause serious side effects, including: • See “What is the most important information I should know about BRIVIACT?” • Nervous system problems. Drowsiness, tiredness, and dizziness are common with BRIVIACT, but can be severe. See “What should I avoid while taking BRIVIACT?” BRIVIACT can also cause problems with balance and coordination.

• Mental (psychiatric) symptoms. BRIVIACT can cause mood and behavior changes such as aggression, agitation, anger, anxiety, apathy, mood swings, depression, hostility, and irritability. Irritability and anxiety are common with BRIVIACT, and can be severe. People who take BRIVIACT can also get psychotic symptoms such as hallucinations (seeing or hearing things that are really not there), delusions (false or strange thoughts or beliefs), and unusual behavior.

The most common side effects of BRIVIACT include: • sleepiness • dizziness • feeling tired • nausea and vomiting Side effects of BRIVIACT in children 4 to less than 16 years of age are similar to those seen in adults.

These are not all the possible side effects of BRIVIACT. For more information, ask your healthcare provider or pharmacist. Tell your healthcare provider about any side effect that bothers you or that does not go away. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to UCB, Inc. at ucbCARES® (1-844-599-CARE [2273]).

Please see additional patient information in the Medication Guide on www.BRIVIACT.com or call 1-844-599-2273. This information does not take the place of talking with your healthcare provider about your condition or your treatment. For more information, go to www.BRIVIACT.com or call 1-844-599-2273.

References: 1. Epilepsy Foundation. Accessed September 1, 2020. https://www. epilepsy.com/ 2. Fisher RS, Bartfeld E, and Cramer JA. Use of an online epilepsy diary to characterize repetitive seizures. Epilepsy Behav. 2015;47:66-71. 3. Penovich PE, Buelow J, Steinberg K, Sirven, J, and Wheless J. Burden of seizure clusters on patients with epilepsy and caregivers. Neurologist. 2017;22(6):207-214. 4. Cereghino JJ. Identification and treatment of acute repetitive seizures in children and adults. Curr Treat Options Neurol. 2007;9(4):249-255. 5. Detyniecki K, Van Ess PJ, Sequeira DJ, Wheless JW, Meng TC, and Pullman WE. Safety and efficacy of midazolam nasal spray in the outpatient treatment of patients with seizure clusters—a randomized, double-blind, placebocontrolled trial. Epilepsia. 2019;60(9):1797-1808. 6. Jafarpour S, Hirsch LJ, Gaínza-Lein M, Kellinghaus C, Detyniecki K. Seizure cluster: Definition, prevalence, consequences, and management. Seizure. 2019;68:9-15. 7. Buck D, Baker GA, Jacoby A, Smith DF, and Chadwick DW. Patients’ experiences of injury as a result of epilepsy. Epilepsia.

1997;38(4):439-444. 8. Haut SR, Shinnar S, and Moshé S. Seizure clustering: risks and outcomes. Epilepsia. 2005;46(1):146-149. 9. McKee HR and Abou-Khalil B. Outpatient pharmacotherapy and modes of administration for acute repetitive and prolonged seizures. CNS Drugs. 2015;29(1):55-70. 10. Agarwal SK and Cloyd JC. Development of benzodiazepines for out-of-hospital management of seizure emergencies. Neurol Clin Pract. 2015;5(1):80-85. 11. Poukas VS, Pollard JR, and Anderson CT. Rescue therapies for seizures. Curr Neurol Neurosci Rep. 2011;11(4):418-422.

Delivering tools During COVID-19, ELHS centers have taken many important steps to identify and correct these gaps in care. They established a Telemedicine Workgroup of clinicians within four weeks. Teams that had never offered telehealth before had services up and running within weeks.

ELHS teams created a telemedicine checklist tool in English and Spanish. To date, there have been more than 500 downloads of the English checklist and nearly 100 of the Spanish version.

They also disseminated telemedicine tools through ELHS centers, local Epilepsy Foundation offıces, and via epilepsy.com.

ELHS members shared their success and best practices with the entire network so others could benefıt from the fındings.

ELHS then took feedback from more than 100 users to evaluate the usefulness of the telemedicine tools. While healthcare providers indicated telehealth could be used for most typical follow-up visits, access to broadband internet, computers, or devices with cameras proved to be a limitation for some families.

Because the transportation barrier was removed from the process, families found telehealth visits to be much easier to access.

“Telehealth has made seeing my epileptologist much more accessible, not only for me, but for caregivers, too,” said Alison Kukla, who has epilepsy. “Since I don’t drive, before telehealth, my husband would have to take time off work, and we’d make the fıvehour round trip to the appointment. Now we can do the appointment right at home and we get the same wonderful care.”

The Epilepsy Foundation is continuing to advocate for expanded access to telehealth.

Join our Speak Up Speak Out advocacy network epilepsy.com/about-us/advocacy. For more information about ELHS, visit epilepsy.com/elhs.

Brandy Fureman, Ph.D., Chief Outcomes Offıcer, Epilepsy Foundation

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Internet influencer Camila Coelho struggled for years with speaking openly about her epilepsy. Now that she has, it has changed her life for the better.

Camila Coelho had her first seizure at 9 years old.

“My hand started closing and I realized something was wrong,” said the 32-year-old blogger and influencer. “My friend didn’t believe me, so I ran to her mom and that’s when I actually fainted.”

Coelho was rushed to the hospital where she received her diagnosis. “It affected me, the fear of having a seizure again and having my family and loved ones see me go through it,” Coelho said.

Her doctor assured her that she could manage her seizures with medication.

“The only thing I could not do was drink alcohol,” she said.

“It was during my teenage years that my friends started partying, and because I took medication and I couldn’t drink alcohol, I started becoming insecure. I started to really reject myself, to feel different from other people, and I started rejecting the condition that I have.”

Coelho remembers her teenage years as a dark time.

“I decided to stop taking the medicine, without telling my mom or my doctors,” she said.

“I ended up having a seizure in high school in front of all of my friends. I remember waking up in the hospital that day and just crying, feeling so guilty and scared. I could’ve taken my life that day.”

Finding inspiration Coelho’s mother was a source of support and encouragement.

“She didn’t yell at me, she wasn’t mad, but she didn’t know that I was struggling so much. If I had talked to her, she could have talked to me before I made a decision to take out the medicine,” Coelho said.

Now with a huge online platform, Coelho opened up publicly about her epilepsy earlier this year for the first time.

“I started thinking, I have this huge platform, I have this amazing community, and this is the only thing I have never shared before,” she said. “So why not?”

A brave face Speaking about epilepsy scared Coelho at first, but once she saw how many people she had

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The ELHS is a patient-centered network hosted by the Epilepsy Foundation on behalf of a large group of partners across the country, including 12 epilepsy centers, key professionals, and community services organizations. The ELHS centers gather data into a central registry and analyze it to identify gaps in care or outcomes that need to improve.

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In March 2020, as the COVID-19 pandemic forced epilepsy centers to shut down, Epilepsy Learning Healthcare System (ELHS) teams sprung into action, working directly with patients and families.

Camila Coelho Opens up About Her Epilepsy

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The Benefıts of Telehealth Visits for Patients with Epilepsy

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encouraged to share their own stories, she knew it was worth it.

“I got to hear so many people’s stories, stories that really inspired me a lot and really helped me make decisions in my own life I’m living now, especially with pregnancy,” she said. “I got to help so many people who were feeling different, who are struggling with accepting themselves.”

Coelho is now an ambassador and board member for the Epilepsy Foundation.

“Working with the Epilepsy Foundation, my biggest goal is to use my story to educate our society and community about epilepsy,” she said. “A lot of people don’t know what to do if you have a seizure next to them, or they wouldn’t even know what it is. I’m trying to educate my community on what epilepsy is and how to end stigma.”

Coelho’s advice for anyone struggling with epilepsy is to learn to accept yourself, and share your story.

“No matter what you’re going through, you are not alone,” she said. “If you believe in yourself, you are able to accomplish anything you want.”

Ross Elliott

The Top 5 Concerns for Parkinson’s Patients During the COVID-19 Pandemic The COVID-19 pandemic has made life more diffıcult for all people, especially those living with Parkinson’s disease (PD). Dr. Rebecca Gilbert, chief science offıcer of the American Parkinson Disease Association, says these are the fıve things PD patients are worried about most right now.

1. How to exercise Exercise is very beneficial for people with PD and is a great activity to do with their care partners. If you can stay six feet away from others, then it is likely safe for you to go outside to exercise.

You can also exercise inside your home, accessing a multitude of online exercise options for people with PD, such as the American Parkinson Disease Association’s free “Be Active & Beyond” exercise guide, which you can access at www.apdaparkinson.org/BeActive, along with many online classes (searching for “APDA Greater St. Louis” on YouTube is a great place to start).

2. How to see the doctor Telemedicine has flourished during the pandemic with many healthcare providers offering video visits for the first time. Contact your provider to determine if you can see them in this manner. The office staff can often walk you through the technology before the visit.

If you have an emergent problem, do not delay your medical care. Hospitals are taking necessary precautions to keep you safe.

3. How to manage increased stress There are things people with PD and their care partners can do together to manage stress, for example: getting fresh air and exercise every day; creating a schedule with online activities like playing card games, listening to audio books, and interacting with grandchildren; and trying something new, such as creating a digital photobook or cooking a new recipe. Also be sure to take breaks from stressful news coverage.

4. How to manage professional caregivers in the home In many situations, it is not possible for care partners to be solely responsible for all of the care someone with PD requires. If you have home health aides coming to your house, be sure they wear masks and are scrupulous about their hand hygiene. Frequently touched surfaces should be disinfected often. If any of the caregivers are not feeling well, they should not come to your home.

5. How to understand PD and COVID-19 risk Although we do not think PD increases the risk of contracting COVID-19, it may increase the risk of complications once infected. People with PD tend to be over 65, which increases risk from COVID-19 (this is true for many care partners as well). PD motor and non-motor symptoms can be made worse by any medical illness, including COVID-19.

PD can cause rigidity of the chest wall, abnormalities of posture, and swallow dysfunction, which can all worsen a respiratory illness. For all these reasons, people with PD should be particularly vigilant about protecting themselves from COVID-19.

For more information about PD, and programs and services that support the PD community during the pandemic and beyond, visit www.apdaparkinson.org.

Dr. Rebecca Gilbert, Chief Scientifıc Offıcer, American Parkinson Disease Association

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