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 and LIFESTYLE MANAGEMENT.
The list below includes some of the key self-management programs available to the epilepsy community.
My Seizure 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/sites/core/files/atoms/files/myseizureplan.pdf
HOBSCOTCH (Home Based Self-management and Cognitive Training Changes Lives)
A program for adults with epilepsy, 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
Project UPLIFT is an internet and telephone program using cognitive behavioral therapy and mindfulness to treat depression in people with epilepsy. Depression is one of the most common psychiatric disorders among people with epilepsy. Project UPLIFT was 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.
PEARLS for Adults with Epilepsy is a home-based treatment program for adults with epilepsy and major, minor, or chronic depression. The name PEARLS stands for Program to Encourage Active Rewarding Lives.
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.
Epilepsy Foundation of America - My Seizure Diary
Epilepsy Foundation My Seizure Diary is your self-management tool to help you record, track, and manage your 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.
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:
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.
WebEase (Web Epilepsy, Awareness, Support and Education) is an interactive, on-line self-management program for people with epilepsy. The goal of WebEase is to support and foster the management of epilepsy by people with epilepsy. WebEase was developed by a team of Emory University researchers and physicians who treat patients 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. WebEase 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 TO REGISTER GO TO: WebEase