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Medical Forum / Diseases and Disorders / Epilepsy / July 2005Looking for recommendations for the family
Hi, I'm looking for recommendations for family, friends and loved ones of those with epilepsy. I'm looking for a support group online that might be able to answer some of my questions about the disease itself and what to expect from medications taken for it. I've found plenty of support for those *with* epilesy, but not for those who live with them. Any help/suggestions would be appreciated.  Signature-=Mara=- Come to the dark side....we have cookies. I reject your reality, and substitute it with my own! > Hi, > I'm looking for recommendations for family, friends and loved ones [quoted text clipped - 8 lines] > Come to the dark side....we have cookies. > I reject your reality, and substitute it with my own! Below is an extract of a post I did in early June. It's not a 'support group', but a good site that Julie has put together over last ~5 years here, that has lots of 'tips and tricks' wrt. safety around the house, first aid charts, first aid in water (swimming), and other things she's assembled or people have contributed to, that will save you time finding for yourself. If you need info. wrt. medications, the Ep. Foundation has a Glossary among other things under http://efa.org site (mentioned below) . This is the earlier post I mentioned --> Below is an extract from an older post I did a few months ago, that lists some support sites including Julie's Idaho website that has a First Aid chart. Within the chart the symptoms the various types of seizures can produce, and some of those might help you know which of the types she might have, plus what to do if any happen when you're there. If she has been given any pills to use, there's a glossary under the Ep. Foundation U.S. site that has detail on a particular pill name. It's at http://efa.org site, if that's not included in older note below -> Idaho main site (bookmark it once you click to it) is http://www.epilepsyidaho.org There are 2 first aid charts, one you can look up for First aid in Water if he swims. But Page 2 of above has Basic First Aid Chart. There's a Printer friendly button top left to Print this page only, that will format it for printing. You can then scroll down to page 10 for Household Safety ideas that has tips and tricks I mentioned earlier. General safety page that might take you direct there anyway is http://www.epilepsyidaho.org/safety/ . G./ Thu 30 Jun 2005 10:54:12a: >> Hi, >> I'm looking for recommendations for family, friends and loved [quoted text clipped - 50 lines] > http://www.epilepsyidaho.org/safety/ . > G./ Thank you, those are all excellent links and good general information. I was hoping for something 'interactive' like a newsgroup/support group though. I have questions about the mood swings that seem to be both preictal, postictal, and just plain ictal. Signature-=Mara=- Come to the dark side....we have cookies. I reject your reality, and substitute it with my own! I have also had trouble finding support for those who support. I stay home on a carers pension to be around my daughter 17 as her epilepsy is not controlled and she has seizures most days and in her sleep and often injures herself. Sometimes it would be good to have a break from being around the same person 24/7. for her as well. I have found respite for mental disabilities but not for epilepsy. Its also hard for the person with epilepsy to find some else than the primary carer who will take on that responsibility. I have found being in touch with this group has helped me. Good luck Jan >I have also had trouble finding support for those who support. I stay > home on a carers pension to be around my daughter 17 as her epilepsy is [quoted text clipped - 6 lines] > group has helped me. > Good luck Jan Is there an Epilepsy Association near to where you live (uk)? If you're near a larger city there might be one. The one near me (Toronto, Canada) have councillors, seminars and group topics at various times during the day and month for e.g. people with kids with seizures, men with seizures, women with seizures, families of newly diagnosed people etc. They might also have an Online Website you could access from home. My local association has a library and videos that they've assembled over several years specific to seizures and medical support. I don't know how much they have (here) wrt. families and caregivers, as I've only been to their conventions, and not their new location. If the http://efa.org site (U.S.) doesn't list foreign sites (outside U.S.), something might turn up on a local search, or at uk.people.support.epilepsy if it is still in operation. I haven't read latter group for more than 5 years. There might be other sites listed under google http://google.com ?? if you set it to search for 'epilepsy&caregivers' or 'epilepsy&families' . G./ the hallowed day of Thu 30 Jun 2005 06:22:22p: > I have also had trouble finding support for those who support. > I stay home on a carers pension to be around my daughter 17 as [quoted text clipped - 7 lines] > group has helped me. > Good luck Jan Good luck to you as well. My situation is very different than yours. I hope you're able to find respite help. Signature-=Mara=- Come to the dark side....we have cookies. I reject your reality, and substitute it with my own! > Thank you, those are all excellent links and good general > information. I was hoping for something 'interactive' like a > newsgroup/support group though. I have questions about the mood > swings that seem to be both preictal, postictal, and just plain > ictal. er - what's ictal? Mary I could be way off here, but I looked it up and found this site. http://professionals.epilepsy.com/page/psysym_depres.html Hope this is helpful, Beck. >> Thank you, those are all excellent links and good general >> information. I was hoping for something 'interactive' like a [quoted text clipped - 5 lines] > > Mary >I could be way off here, but I looked it up and found this site. > http://professionals.epilepsy.com/page/psysym_depres.html > > Hope this is helpful, > Beck. Yes, I understand now, thank you. Mary Fri 01 Jul 2005 03:45:08a: > I could be way off here, but I looked it up and found this site. > http://professionals.epilepsy.com/page/psysym_depres.html > > Hope this is helpful, > Beck. I found some definitions on Google as well. Honestly...I didn't realize it was a "real" word...I sort of made it up :) I've teased my fiance that at times he seems always preictal or postictal, so I figured there had to be a "just plain ictal" time in between. Signature-=Mara=- Come to the dark side....we have cookies. I reject your reality, and substitute it with my own! Fri 01 Jul 2005 03:45:08a: > I could be way off here, but I looked it up and found this site. > http://professionals.epilepsy.com/page/psysym_depres.html > > Hope this is helpful, > Beck. Thank you for posting that link, btw. Signature-=Mara=- Come to the dark side....we have cookies. I reject your reality, and substitute it with my own! Hi, you are welcome to ask questions of all of us. Also there is ecommunities at the Epilepsy Foundation website (U.S.) http://www.epilepsyfoundation.org/eCommunities/index.cfm Take care, Julie, Volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilepsyidaho.org > Hi, > [quoted text clipped - 13 lines] > > I reject your reality, and substitute it with my own! 30 Jun 2005 10:37:37p: > Hi, you are welcome to ask questions of all of us. Also there > is ecommunities at the Epilepsy Foundation website (U.S.) > http://www.epilepsyfoundation.org/eCommunities/index.cfm That's excellent, thank you :) Signature-=Mara=- Come to the dark side....we have cookies. I reject your reality, and substitute it with my own! There's a conference that's in the planning stages at the moment that's going to take place in Toronto within the next 4-5 months I think, that's specifically aimed at family members and friends of those who have epilepsy. I think some of the topics will include basic information about epilepsy, psycho-social effects of epilepsy, impact on the family, women's issues related to epilepsy. The conference organizers noticed a lack of information about such topics and wanted to provide information to those impacted by epilepsy. They're preparing a web site which will include chat rooms I think. It should also provide summary information following the conference as well as relevant links to useful resources in this area. I'll pass on info as I find out more. > Hi, > [quoted text clipped - 6 lines] > those who live with them. Any help/suggestions would be > appreciated. day of Fri 01 Jul 2005 01:15:38p: > There's a conference that's in the planning stages at the > moment that's going to take place in Toronto within the next [quoted text clipped - 9 lines] > conference as well as relevant links to useful resources in > this area. I'll pass on info as I find out more. Toronto's a bit far to go, but thanks for the information. It helps to know that others have seen a need for this. I been a member of Al-Anon (12 step support group from friends and families of alcoholics) for 15 years, and I know support groups can be invaluable. THe actual seizures don't bother me at all. Even the absent seizures he used to have weren't any biggie (though they bothered him). But I'd like to find a way of understanding and dealing with the mood swings, emotional aspects, and memory loss that come with the seizures, and not have it/them negatively impact our relationship. Yeah...I know. I want it all, and I want it gift-wrapped :) Signature-=Mara=- Come to the dark side....we have cookies. I reject your reality, and substitute it with my own! Hi Biscuit, There is a new global online community which has been setup for people with Epilepsy. http://www.globalepilepsynetwork.org it has a fully loaded knowledge base, drugs details, forums, chat room, online pic album for members... Its only a month old and very addictive. Come and say hi! Good luck Nik > Hi, > [quoted text clipped - 13 lines] > > I reject your reality, and substitute it with my own! hallowed day of Sat 02 Jul 2005 02:03:45a: > Hi Biscuit, > [quoted text clipped - 11 lines] > > Good luck Waaaay cool, thanks! Signature-=Mara=- Come to the dark side....we have cookies. I reject your reality, and substitute it with my own! |
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