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This article was published in November 2013. The information may be out of date. Please check our epilepsy information or our site A-Z.

Learning to manage

22 Nov 2013

Epilepsy Action has launched a new collection of online resources to teach you, your friends, family and colleagues all about epilepsy. Ranging from personal stories to seizure first aid, these resources aim to help you in living with your condition

They say knowledge is power. Knowing more about any task helps you accomplish it faster and more easily. Living with epilepsy is no different. We all know that seizures come with all manner of different impacts on many aspects of your life. These may be impacts on your mood, your independence, your relationships or a hundred other things.

In an ideal world, our doctors, specialists and epilepsy nurses would be onhand to give us all the information we need. Unfortunately, this isn’t always practical. So, if you need some extra advice on how to manage your condition, where do you go?

These days, the answer is obvious: the internet. The only problem with online information is that it’s hard to be sure that it’s accurate. Epilepsy Action has always prided itself on providing high-quality information. The advice and information offered at epilepsy.org.uk is covered by the Department of Health’s Information Standard. That means you know that you can trust it.

The Epilepsy Action website has just launched a new section – Epilepsy Action Learning. This is a new e-learning section, meaning ‘electronic learning’. This kind of learning is becoming increasingly popular. You can do it from the comfort of your home, wherever you are in the world.

Epilepsy Action Learning is filled with a growing number of online modules that teach a variety of epilepsy-related topics. The modules are all informative and interactive, offering advice, tips, quizzes and videos.

Some modules are free for anyone to complete, while others are just for Epilepsy Action members. Any modules that offer information about your condition are covered by the Information Standard – for your peace of mind.

What can I study?

Computer libraryFree resources

The first section available in Epilepsy Action Learning is Free resources. These resources might be worth a read if you have epilepsy. However, they are mainly designed for people without the condition.

This section might be the place to send your friends, relatives, colleagues and employers. Here, they can find information that will help them better understand your life with epilepsy. This section has What to do when someone has a seizure, so someone knows how to do seizure first aid if need be.

Epilepsy: quick questions and answers offers quick and bite-sized epilepsy information. Meanwhile, Living with epilepsy is full of short videos of people describing their lives with seizures. Finally, a Mythbusters quiz tries to weed out those misconceptions that people may have about your condition.

Members

Aside from the free section, there is a section for Epilepsy Action members – which includes a growing range of modules available just for you. These modules are contained in the Managing your wellbeing section.

Wellbeing is a ‘holistic’ concept – meaning that it covers both your physical and mental health. Even though epilepsy is a physical disorder, it can also affect your mood and your confidence in lots of different ways.

The wellbeing resources aim to give you valuable information and advice on living with your epilepsy on a practical level. They also aim to make sure that your condition isn’t impacting too severely on your mood.

Epilepsy Action Learning screenshotAt the moment, two modules are available.

1. Your seizure triggers

Some people with epilepsy find that certain things or situations make their seizures more likely to happen. These are called seizure triggers.

This module explains seizure triggers in more detail. You will learn how to find your own seizure triggers using a seizure diary. There are also hints and tips to help you avoid your own seizure triggers.

2. Epilepsy and memory

People with epilepsy often report that they have problems with their memory. This can have a big impact on your everyday life and wellbeing.

This module explains how epilepsy can affect your memory. It includes useful hints and tips for coping with memory problems.

More members-only modules will be added as this section grows – giving you more tips and advice to help manage your condition. Coming very soon are two new modules: Taking medication for epilepsy and Epilepsy and stress.

Also contained in the Members section of Epilepsy Action Learning are two tools to help you with your mental wellbeing. The first is the How are you feeling? tool – an interactive quiz that gauges your level of wellbeing. The quiz gives you a score so you’ll know if there are things you might do to improve your wellbeing.

Meanwhile, a Wellbeing directory gives you some handy contact details for other organisations that might be able to help you. That help might be related to anxiety or depression, stress, alcohol or your physical wellbeing.

For more information or to start your epilepsy learning now, visit Epilepsy Action Learning.

What you think

Woman using a computerWe asked some keen volunteers to test Epilepsy Action Learning. Here’s what they had to say

“Modules are clear, concise and easy to follow. I liked being able to click on just the sections that were relevant. The programme was simple and easy to work through.”

“I think the balanced approach to a variety of triggers is well done. In particular, the encouragement to use a seizure diary is helpful, positive and practical. It has a straightforward and sympathetic style, with clear and uncluttered pages.”

Epilepsy specialist nurse, Pam Mantri, says: “This is very useful. The graphics illustrate the content of the module well. All the content is easy to read. I like the consistency of presentation. Once you have completed one module, they all become very easy to use, they are very user-friendly.

“The ‘people’s stories’ are an excellent idea. One thing an epilepsy nurse cannot do (unless they have epilepsy) is to say how it feels. I have heard people with epilepsy say that they thought they were ‘falling apart’. They had forgotten really major events in their lives. I think they would have been very reassured to read some of these experiences.

“The tips for aiding memory are very useful and practical. I thought the wellbeing score was a useful section, too. It gives people something concrete with which to compare scores at different times. For instance, if they feel that a new medication is having a negative effect on them.  A worsening score might prompt someone to seek help. While giving useful information, the tone of Epilepsy Action Learning supports individuals’ choices.”

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