Welcome to Epilepsy Grief's Website

THE BED MONITOR LIBRARY IS NOW UP AND RUNNING! 

  With the assistance of Kedron Wavell Services Club, our bed monitor library is now up and running!  We currently have two models of monitors available.   The monitors consist of a flat mat that sits between the mattress of the bed and the base of the bed.  This  in turn connects to a box that monitors the person sleeping and will send out a signal alarm to a small portable device alerting loved ones to any changes in sleeping patterns, such as seizure activity.  World trials on this device are still currently underway.  These trials are being carried out in hospitals in both the USA and Brisbane, Australia.  Technology is constantly changing, and the future monitoring devices being developed will enable bluetooth connections to computers, which in turn will chart sleeping patterns and changes and allow this information to be sent through to doctors, neurologists alerting them to any patient problems.

Anyone using a bed monitor device, must understand that a monitoring device does not save a life - it cannot offer assistance to anyone suffering from any seizure activity - it simply acts as a warning device to allow another person to assist.   Also devices do have false alarms, where something can trigger an alarm when there is no seizure activity etc present.  These false alarms can be modified with the assistance of the company that develped the device, so a little patience in set up is required.  However the patients that we have currently using a device are finding them helpful and it has assisted some in assisting during a seizure, whereby the family would be unaware of any seizure activity occurring. 

There is a lot of debate around the world as to whether a device can assist and as to whether family members become too reliant upon the device.  However, we believe that anything that assists in preventing Sudep from occurring is far better then having nothing at all to assist, and please give families their due in being able to  recognise that devices are not always totally reliable.  In the worst case scenario - if a monitoring device only warns of 50% of seizure activity - surely that 50% is better then having 0% currently available!  (Current test results have the percentage much higher then 50%).

 To lose a loved one from Sudep is devastating for the family involved.  It is even more devastating to learn afterwards that there were monitoring devices available that gave a chance of notification to loved ones.  Im sure if everyone put themselves in the shoes of loved ones, they too would want to be given the opportunity of choosing whether to use a monitoring device or not.

However it is still a proven fact that the best line of defence against Sudep is to become seizure free through medications - taking your medications regularly can not be stressed enough!

SUPPORT FOR FAMILIES AND LOVED ONES

Anyone that has a loved one that suffers from epilepsy, especially night time seizures, knows the feeling of dread and feeling so alone.    2AM in the morning your sitting beside your loved one with tears streaming down your face and not knowing where to turn for help.  If you call an ambulance and travel to the hospital, then you sit next to a bed with the hospital monitoring O2 levels.  At that time of the morning, you will usually have someone overdosed on alcohol, drugs next to you.  It is not a pretty site to visit at that time of the morning, and often patients will refuse to go as the reality is that apart from the O2 levels, and blood testing for your epileptic drug levels, there is nothing they can do to assist.  Where do you turn?

You are not alone - there are others in similar situations as you.  Often it helps just to talk to others.  If your after someone to chat to or want to get in touch with another person in a similar situation, please contact us and we will assist you.  No-one should ever feel that alone and desperate.

 We also offer support through our book library - if you are after a certain book, please contact us as we may possibly have it in our library and are able to ship it out via post.

Lost a loved one through Epilepsy?  We offer support to those affected and assist them in navigating the minefield that follows.  There is nothing like talking to someone else that has been through the same situation as yourself - they understand and can assist.