Living with seizures means learning how to manage the way epilepsy can affect your life in general and this includes your social, emotional and physical well-being.
The most effective way to manage your epilepsy is to take a practical approach emphasizing preparation and prevention. A teamwork approach with your family your epilepsy care providers will benefit you as you set your goals for managing your epilepsy.
Epilepsy self-management encompasses three essential and broad areas:
- Treatment management
- Seizure management
- Lifestyle management
Some of the key self-management programs available to the epilepsy community include:
My Seizure Response Plan
A standardized form to assist you in communicating what a person (family member, friend, teacher, school nurse, coworker, coach etc.) should do to assist you if you have a seizure. To link to the form go to: http://www.epilepsy.com/
Home Based Self-management and Cognitive Training Changes Lives (HOBSCOTCH) can improve memory performance and quality of life in adults with epilepsy who have memory problems. Participants learn memory skills and strategies, then practice these skills and apply problem-solving techniques in everyday, real-life situations between visits.
To learn more about the HOBSCOTCH program visit: http://managingepilepsywell.org/programs/hobscotch.html
Depression is one of the most common psychiatric disorders among people with epilepsy. Project UPLIFT is an internet and telephone program that uses cognitive behavioral therapy and mindfulness to treat depression in people with epilepsy.
Created to help people better understand and cope with depression, Project UPLIFT is a home-based program provided by a mental health professional who has completed a ten-week training course.
For more information on UPLIFT, go to: http://www.epilepsy.com/
The Program to Encourage Active Rewarding Lives (PEARLS for Adults with Epilepsy) is a home-based treatment program for adults with epilepsy and major, minor, or chronic depression.
The method is designed to reduce depressive symptoms and improve quality of life during 6 to 8 sessions that take place in the client's home and focus on brief behavioral techniques. PEARLS Program counselors empower people to take action and make lasting changes so that they can lead more active and rewarding lives.
For more information on PEARLS, go to: http://www.pearlsprogram.org/
Epilepsy Foundation of America - My Seizure Diary
Telling your own story can be just as beneficial as hearing those of others. That’s why the Epilepsy Foundation of America started the My Seizure Diary, a helpful self-management tool to help individuals record, track, and manage their seizures and epilepsy.
The Diary lets you record your medical history, seizures, medications, side effects, moods, or other personal experiences. You can also create a Seizure Response Plan to share with your family, friends and health care team. Understanding your seizures may help you identify triggers to avoid.
My Seizure Diary also allows for you to create reminders of when to take your medicines, when to refill a prescription, or when you have medical appointments or tests. My Seizure Diary lets you print out reports or send them to others, including your health care team electronically.
For more information on the My Seizure Diary, go to: https://diary.epilepsy.com/
Texting 4 Control
Texting 4 Control is a new system targeted to users aged 13 and older with mobile phones that allows you to:
- receive reminders via text messaging about when to take medications
- receive motivational messaging if you are having a particularly tough week managing your epilepsy, and
- record seizures, emergency room visits, rescue meds, and/or injuries in a patient diary that you can share with your neurologist or epidemiologist.
Sign up for the Texting 4 Control System Here: https://www.texting4control.com/login.php
Texting 4 Control is made possible through the Epilepsy Foundation of America with funding from the Centers for Disease Control and Prevention (CDC) under cooperative agreement number 1U58DP003832-02.
Web Epilepsy, Awareness, Support and Education (WebEase) is an interactive online self-management program for people with epilepsy, developed by a team of Emory University researchers and physicians who treat patients with epilepsy.
The goal of WebEase is to support and foster the management of epilepsy by people with epilepsy. WebEase does not tell you what you should do. Rather, it guides you to think about what is important to you in managing your epilepsy and encourages you to make decisions that are consistent with your own goals.
The program consists of three interactive modules—medication taking, stress and sleep management. Each module lets you read information, respond to questions, receive feedback, and watch and listen to testimonials. You also learn helpful strategies to improve your epilepsy self-management and set goals that are personalized to meet your specific needs and concerns.
WebEase includes MyLog, an online personal journal you can use to track seizures, medication, stress and sleep patterns. WebEase then provides feedback about how your behaviors may affect your epilepsy.
WebEase is for anyone living with epilepsy and who is interested in improving their self-management skills. To learn more and register, go to: WebEase
New therapies for epilepsy, including medications, medical devices and surgical procedures, are under active evaluation around the country in clinical trials. Physicians are often asked by their patients with epilepsy about available clinical trials.
Individuals can search the epilepsy.com clinical trials database, where all available clinical trials can be viewed or where you may narrow your search by filling in a zip code, state or region. Each listed study states the purpose of the study, a short description, study qualifications, study approvals, the study design, any costs or payments, and contact information.
Individuals looking for further clinical trial information can reference the following:
Clinical Trials Patient Assistance Fund
The Epilepsy Foundation has developed this program to provide financial assistance to individuals with limited financial resources who have been accepted for enrollment in any IRB-approved clinical trial of an epilepsy therapy and who has signed an informed consent form for the trial.
Funding will be made available to help cover out of pocket costs associated with participation in these clinical trials. Eligible expenses for reimbursement will include travel expenses to the study site and copayments, deductibles, and coinsurance required by the patient’s health plan.
For more information or questions about this program email: @email