Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 There aren't enough of them! This on-line group was a sanity saver for me. There is supposed to be a group forming locally but I have heard nothing about it recently. I got my ICD in July, the next planned meeting for this group was supposed to be in October but I didn't hear anything and I was too busy to seek it out on my own that month. What else would you like to know? . . . maybe that hearing from others who have the device helps one get through the first few months. . . . That hearing from people who have been zapped already and are still here, helps calm the nerves until it happens to you. . . . That it helps to know we aren't alone in dealing with this. Bridget > Hello Everyone, > My name is Pierce and I am doing a project on ICD support > groups for a technology and communications class in college. Any > information that anyone could pass along would be greatly > appreciated. Please send to rpknfn14@c... thanks again > > Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 What type of information are you looking for? I'm crazy for cross stitch! http://mai_lin.tripod.com/crossstitch/mainframes.html >From: " " <rpknfn14@...> >Reply- > >Subject: Project >Date: Tue, 12 Nov 2002 13:15:10 -0000 > >Hello Everyone, >My name is Pierce and I am doing a project on ICD support >groups for a technology and communications class in college. Any >information that anyone could pass along would be greatly >appreciated. Please send to rpknfn14@... thanks again > >Chris > _________________________________________________________________ MSN 8 with e-mail virus protection service: 2 months FREE* http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Well we are doing a group project for a technology and communications class. One girl is doing specifically how the ICD works. My specific part of the paper is on support groups. A girl in my groups father has an icd so that is how we came to choose that as our topic. I guess what I am curious about is how the support group(s) have helped people live with an ICD. and how the internet also has helped make the support groups easier and if anyone is now part of an online support group that was part of an offline one and how technology has made it easier. > What type of information are you looking for? > > > > > > I'm crazy for cross stitch! > http://mai_lin.tripod.com/crossstitch/mainframes.html > > > > > > >From: " " <rpknfn14@c...> > >Reply-@y... > >@y... > >Subject: Project > >Date: Tue, 12 Nov 2002 13:15:10 -0000 > > > >Hello Everyone, > >My name is Pierce and I am doing a project on ICD support > >groups for a technology and communications class in college. Any > >information that anyone could pass along would be greatly > >appreciated. Please send to rpknfn14@c... thanks again > > > >Chris > > > > > _________________________________________________________________ > MSN 8 with e-mail virus protection service: 2 months FREE* > http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Hi Chris. I'm the wife of someone with an ICD. My husband goes into A-fib at least once a month and consequently gets "zapped". This has been very difficult to deal with and we live in fear most of the time. I came across the zapper site one day and started "listening in". I haven't joined in the discussion yet - it seems to be a pretty tight-knit group. Just listening to their chat has been a great source of encouragement to me. It means a lot to know there are others out there dealing with the same problems. I have a great deal of admiration for these courageous survivors and the loving support they give one another. I've tried to find a "live" group where I live (in San Diego). There is one group that I've been able to track down but they only meet ONCE A YEAR! There annual meeting is in December so I'm looking forward to it. In the meantime, I'm very grateful for the on-line group. In addition to support they also share information with each other which I have found very helpful. Sometimes the doctors don't give you a lot of information and it helps to be able to throw a questions out to the (experienced) group. I hope this helps. I'll be happy to answer any other questions you have. Good luck. Project> >Date: Tue, 12 Nov 2002 13:15:10 -0000> >> >Hello Everyone,> >My name is Pierce and I am doing a project on ICD support> >groups for a technology and communications class in college. Any> >information that anyone could pass along would be greatly> >appreciated. Please send to rpknfn14@c... thanks again> >> >Chris> >> > > _________________________________________________________________> MSN 8 with e-mail virus protection service: 2 months FREE* > http://join.msn.com/?page=features/virusPlease visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Hi, Sherry, welcome to the . There are great people on this list who gladly share their experiences with all comers. Regarding the doctors, one thing I've found helpful was to write a list of questions that I can take with me whenever I see the doc. HMO docs hate this because of the time element but they are obligated to answer all the questions. I write down the answers to discuss later with my wife. If more questions arise, I'll write them down for the next visit. Mike From: Sherry Chase <Sherry.Chase@...> Subject: RE: Re: Project Hi Chris. I'm the wife of someone with an ICD. My husband goes into A-fib at least once a month and consequently gets " zapped " . This has been very difficult to deal with and we live in fear most of the time. I came across the zapper site one day and started " listening in " . I haven't joined in the discussion yet - it seems to be a pretty tight-knit group. Just listening to their chat has been a great source of encouragement to me. It means a lot to know there are others out there dealing with the same problems. I have a great deal of admiration for these courageous survivors and the loving support they give one another. I've tried to find a " live " group where I live (in San Diego). There is one group that I've been able to track down but they only meet ONCE A YEAR! There annual meeting is in December so I'm looking forward to it. In the meantime, I'm very grateful for the on-line group. In addition to support they also share information with each other which I have found very helpful. Sometimes the doctors don't give you a lot of information and it helps to be able to throw a questions out to the (experienced) group. I hope this helps. I'll be happy to answer any other questions you have. Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 This online support group is wonderful. I have learned so much from them. The doctors are all great but they haven't lived in our situations and these people have experience and know a lot about the icd and living with it. When I have a question, I just come on here and ask and usually several people come on with some answers. I even learn a lot just by "listening" to what everyone says on here whether I am in the conversation or not. Everyone one is so supportive, even the ones who have gone through the most. Ruth in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 I forgot to mention, there is an icd support group in Pittsburgh, PA, where I got my implant but it is 1 1/2 hours away. That's what makes having this support group online much more convenient. They meet 4 times a year and I have been to 2 of them and they are good but it is an exhausting day to go there. Ruth in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2008 Report Share Posted August 15, 2008 This is a group for members made up of mostly disabled, little people, or people who have illnesses. The goal is for people to come together and show what talents they have in photography, artwork, short stories, and poetry. We hope to show people that despite our medical problems we can still be capable and talented. The work will be published in a book. The proceeds will go toward the American Cancer Society. clooney120/ myspace site: http://groups.myspace.com/writingproject Quote Link to comment Share on other sites More sharing options...
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