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This place is NOT a supportive place.

Tue, 08/29/2006 - 12:25
I tried to email this to the Moderator so it would not be placed in plubic, but it came back as unable to deliver, so then I tried to send it to the webmaster and it came back too. So I will post it here. Dear Moderator, First let me say hello and good morning 0(*_*)0 I am sadden by what I do not see at your website and felt the need to verbalize it. I joined Epilepsy.com a few days ago in the hope of gaining in-site as well as maybe a few new friends. I first found a tread that I felt I may be able to give a small input to, so I reply to it. I was not only the first to reply but as of this morning, the only one to. I even went to one of your treads you have for new people and open a tread myself, just to say hello I'm new here. As of this morning I have yet to get a reply from anyone saying "Welcome". Not even a staff member has said hello on it. It saddens me to see how little if any caring people are at your site. I noticed others who had done as I had and started a "hello I'm new tread" and like myself had no one reply. I have been a member of the epilepsyfoundation.org for many of years and it has some of the greatest members you will ever come across at it. We all (most of us) will always welcome and even give a hug to any and all new members. Years ago when I was having 30 plus seizures a month, and had lost my Lic. to drive due to my seizures, thank goodness I had loving and caring friends at epilepsyfoundation.org to turn to. People who lifted my spirits up and said things on the lines of "Sending you hugs Tonya". I haven't open/started a tread there in a few years but I try to reply to any and all if not to say anymore than "My heart goes out to you" or "I'll keep you in my prayers". You see I had a RTL 1/13/98 and have remained seizure free/drug free so I am "living well with epilepsy" so to speak. But I'm not alone for many like myself will always take a few min. to give a reply or a hug where needed. I guess I'm rambling on a little to much here, but what it all comes to is kinda like this. Your site is not a warm, caring and welcoming place to be, it is cold and uncaring. Thâñkš ƒô® Ÿóú® †ím€!! Dovie aka Tonya (¯`'·.¸¸.•Dovie••(¯°¤• •¤°¯)••Hug§•.¸¸.·'´¯)

Comments

Re: Re: Re: This place is NOT a supportive place.

Submitted by Dovie on Fri, 2006-09-01 - 11:02
Thank you all for the very warm and friendly replies. Essie I enjoyed the small chat we had as well. George I got your email and thank you for it. Can I give you all group hug? Please please lol (¯`'·.¸¸.•Dovie••(¯°¤• everyone •¤°¯)••Hug§•.¸¸.·'´¯) "For daily need there is daily grace; for sudden need, sudden grace, and for overwhelming need, overwhelming grace." ô¿ô 0(*_*)0 0(Q _ Q)0 ( ^ . ^ ) Happy Labor day, Dovie

Re: This place is NOT a supportive place.

Submitted by kgknight on Sun, 2006-09-03 - 17:09
Don't be so hasty in expecting responses. On the EFA.org site I have mentioned things and I guess the statements I made were not ones others wanted to respond to, but don't forget we're not on the site 24 hrs a day so sometimes by the time someone comes online to this site and reads your comment you have already gotten disappointed by no response. I spend about 14 hrs daily on the computer but I take a visit to the epilepsy sites about twice a week. I'm on my yahoo messenger, msn messenger and many other sites and its by messenger that I do most of my communicating. I can understand your impatience but as I have stated be more patient, because we are not online constantly and some of us, like my nephew who has partial complex seizures does not like talking about it. He will hear what others have to say but won't say a word and does not like for people to know he has seizures. I used to be in the Support Group in NYC last year and have moved to Omaha Nebraska a few months ago and have not found support groups and places to meet yet, but if I can't find a place I'll try and round up the Epileptics by asking the hospital so we can meet and get acquainted. I have read your note and I say "WELCOME" I just joined today Sunday, Sept 3rd, 2006, so I'm as New as you are also. If you want to write me and discuss things I will. I have had Partial Complex (Right Temporal Lobe Seizures since 1956 and boy do I have a tale to tell. My past was miserable. Epilepsy, still a mystery to many. Having seizures does not mean we are less of a person, just different. We are capable of loving and being loved.

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