Hello to all

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Status
Not open for further replies.
N

Nala

New
Messages
6
Reaction score
0
Points
0
Hi to everyone,

My real name is Jen and I have had epilepsy since I was 14 years I am now 43... I have 3 types of seizures.. Grandmals, Partials, Petitmals.. I am taking keppera and also primidone for my seizures.. I still have alot of seizures .. I have been alone a long time with my E as most people I know are a little ignorant and feel insecure.. I just want to make some friends who understand me and who I really am behind the seizures...

Nala
 
Welcome Nala :flowers:

Glad you joined us. There are lots of interesting and diverse members from all over the world who also share your same experiance here. :dancing2:
 
Thank you for the welcome I wish I could find ways to live on my own too I am in an abusive home (emotional) and really need to know how to be on my own... I am interested in the Dogs for one but are there people that would checkon you as well a few times a week so alot of us can be a little more dependent on own?
 
Hi Nala, welcome to the forum. :hello:
 
Hi Nala
I live alone.
I have seizures during my sleep.
I have a seizure alarm on my bed that is connected to an emergency phone and monitored by a company who has all my details. The alarm detects excess movement.
There are also posture monitors that are worn on the body that can detect the change in posture from a fall and triggers the alarm (you don't need to push a button) and is connected to the phone.

If I have a seizure the monitoring company get an automatic message with my details. As I don't have family living nearby they send an ambulance to my house with instructions and the key access code.
The monitoring company ring my house first to check for false alarm. (I've had a few)
The alarms are expensive but worth it for piece of mind. A charity paid for mine. I asked for help and they paid for all of it. I only pay for the ongoing monitoring fees which are minimal.

Emfit is one company that make seizure monitors/alarms. I'm not sure if they do the posture monitor but if you google you might find it. Or the epilepsy association in your area/country might know.

You could check with your local charity organisations to see if they can set up a daily check for you, even a phone call. Or you could pay a security company to do a check. They have security patrols that go around to different places.

Lorraine
 
Status
Not open for further replies.
Back
Top Bottom