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Adult daughter has JME epilepsy which has seriously deteriorated, finding it hard

FionaAFionaA Member Posts: 15 Connected
I am the sole parent of an adult daughter with JME elipepsy. It started when she was 16 ish but she managed to complete school and University and running a business. In the last 18 months or so she has seriously deteriorated and can no longer work. We have done the consultant thing and he is great but there is nothing more that medication can do. So her hopes, aspirations and dreams have all been shattered and my smart and talented girl can't even cope with a job in a tea room for a few hours a day. Her fits are changing and increasing and I have moved to be nearer her when she needs me. Even her daily living is now chaotic but she tries so very hard it would break your heart. Does anyone out there have anything similar going on. At 61 I am now struggling with the knowledge that I will probably outlive her. The videos were great and I watched them but she is not a child and I have to help without being in charge any more and somehow manage my own emotions. 


  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Hello @FionaA and a warm welcome to the community. I am glad you have found us, but very sorry to read of what you and your daughter are going through. I, too, have lived with that conviction that I would outlive my child, and it's no fun, is it? I'm here if it would help to chat, to rant or anything else.
    There is every chance that among our wide membership you will find others in a similar position and, hopefully, they too will get back to you.
    Can I ask what the videos were to which you refer?
    Do keep in touch and, as i said, I'm here and would be honoured to get to know you better.
    Warmest best wishes to you
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