Epilepsy Community

[acbyrd]

Hi, my name is Aubrey and I am a sophomore at the University of Cincinnati. My father has epilepsy with Grand Mal seizures. I am on this forum to find out more about epilepsy and see if I can help. Also I was assigned in my discourse communities class to look at an online community and see what the community offers, support and information, etc. I would like to ask a few questions and introduce myself. Just so you all know I am not going to use any names or present this to the class, I am just writing a paper analyzing this community. I thought it would be nice to pick this community since my father has epilepsy. If you do not feel comfortable answering any questions it is completely fine. If you don’t feel comfortable answering any of these questions in this forum you may send me a PM or an email (see link from the contact tab on my profile). Thanks for all your help in advance!

What do you consider a member of the community? (Someone who visits often, Someone who registered or Someone who continues to offer help and support.)

Do patients/community members suggest doctors or specialists to go to?

Do doctors join this community? Have you ever experienced a Doctor on this community? What was it like? Helpful?

Does this community offer treatments?

Has the community helped you treat epilepsy? Why do you continue to come back and help?

Do you look to the Internet for help and why? Do you do this because it is
confidential?

Are you part of this community for support/or to help /to offer suggestions? Why are you a part of the community?

Is “Coping-With-Epilepsy.com” more than a community to you?
What have you gained from all this?

What other sites do you go to look for support/help? Or do you go to any other sites?

Have you ever been to Epilepsy Advocate? I also researched this site but there does not seem to be a message board? Is this a reason you do/do not go to the site?

Is there a certain language to this community? I noticed you all use "E" as a slang word for Epilepsy. Are there any others?



Thanks Again!

 

[Bernard]

Q. What do you consider a member of the community? (Someone who visits often, Someone who registered or Someone who continues to offer help and support.)
A. I consider anyone who registers and participates in the forum (excepting spammers and the rare troll) to be part of the community.


Q. Do patients/community members suggest doctors or specialists to go to?
A. Sometimes people ask for recommendations. Rarely will they get a specific recommendation from another community member. Usually folks are directed to the AES or to this thread.


Q. Do doctors join this community? Have you ever experienced a Doctor on this community? What was it like? Helpful?
A. There are a few doctors who have joined the community. Dr. Arvind has been the most active on the site (back before he started working crazy hours in a hospital). He has been very helpful IMO with general advice.


Q. Does this community offer treatments?
A. No.


Q. Has the community helped you treat epilepsy? Why do you continue to come back and help?
A. I have learned a lot about alternative treatment options such as the various diets and neurobehavioral therapy from interactions in the forum. Without hearing about them here, I might never have ever been made aware of them through my wife's doctors.


Q. Do you look to the Internet for help and why? Do you do this because it is confidential?
A. http://www.coping-with-epilepsy.com/forums/f23/what-ive-learned-e-patients-607/


Q. Are you part of this community for support/or to help /to offer suggestions? Why are you a part of the community?
A. Help where I can, learn where I can.


Q. Is “Coping-With-Epilepsy.com” more than a community to you? What have you gained from all this?
A. I have established friendships/connections with some really amazing people. My undertsanding of the epilepsy experience - the whole experience much beyond my wife's personal experience - has really broadened my horizons and in some instances given me a much better perspective on what is going on with my wife at times when she isn't really able to communicate things clearly.


Q. What other sites do you go to look for support/help? Or do you go to any other sites?
A. I visit a number of other epilepsy forums. Every community has it's own personality/tone. Some are more chatty and others are more serious. There is something to be gleaned from all of them IMO.


Q. Have you ever been to Epilepsy Advocate? I also researched this site but there does not seem to be a message board? Is this a reason you do/do not go to the site?
A. There are a few members here that are getting their newsletter or postcards or whatever and make announcements when they are offering scholarships or holding local events.


Q. Is there a certain language to this community? I noticed you all use "E" as a slang word for Epilepsy. Are there any others?
A. http://www.coping-with-epilepsy.com/forums/f26/understanding-acronyms-926/
http://www.coping-with-epilepsy.com/forums/f26/definitions-medical-terms-5397/
http://www.coping-with-epilepsy.com/forums/f26/acronym-expansions-2781/

 

[knothing]

Q. What do you consider a member of the community? (Someone who visits often, Someone who registered or Someone who continues to offer help and support.)
A. Same a Bernard said.


Q. Do patients/community members suggest doctors or specialists to go to?
A. From what I have seen most give advice on how to work with their doctor.

Q. Do doctors join this community? Have you ever experienced a Doctor on this community? What was it like? Helpful?
A. Unknown to me.


Q. Does this community offer treatments?
A. No


Q. Has the community helped you treat epilepsy? Why do you continue to come back and help?
A. They have helped in learning more about what E is. I come back to learn more and to help if I can.


Q. Do you look to the Internet for help and why? Do you do this because it is confidential?
A. The internet allows me to speak to people from all over instead of finding people in the community which is harder to do at times.


Q. Are you part of this community for support/or to help /to offer suggestions? Why are you a part of the community?
A. All of the above.


Q. Is “Coping-With-Epilepsy.com” more than a community to you? What have you gained from all this?
A. It is a safe refuge to discuss a sometimes difficult issue. It really gives you the understanding that you are not alone and you have friends that get it.


Q. What other sites do you go to look for support/help? Or do you go to any other sites?
A. Epilepsy.com but this site is better.


Q. Have you ever been to Epilepsy Advocate? I also researched this site but there does not seem to be a message board? Is this a reason you do/do not go to the site?
A. No and really no reason


Q. Is there a certain language to this community? I noticed you all use "E" as a slang word for Epilepsy. Are there any others?
A. E is no more different than texting language. I cannot think of any others right now.

~~

Very few time do I find people close that have this issue. I am just curious if your family is from around the Cincinnati area. Send me a PM (private message) to answer because I live about 5 to 10 minutes from downtown Cincy. I hope the answers helped.

 

[Nakamova]

Q. What do you consider a member of the community?
A. Just about anyone who comes to visit, and everyone who comes to stay, or drops in from time-to-time.


Q. Do patients/community members suggest doctors or specialists to go to?
A. Folks are usually directed to sites that have a database of doctors, though occasionally an individual name might be suggested.


Q. Do doctors join this community? Have you ever experienced a Doctor on this community? What was it like? Helpful?
A. There are a few, though this tends to be a patient- or caregiver-based site.


Q. Does this community offer treatments?
A. Nope.


Q. Has the community helped you treat epilepsy? Why do you continue to come back and help?
A. The site name says it -- CWE offers coping strategies, strategies for being proactive, empathetic support, and a wealth of individual experiences to learn from and draw upon. So it can help with self-care and with inspiration.


Q. Do you look to the Internet for help and why? Do you do this because it is confidential?
A. I use the Internet as a health resource not necessarily because it is confidential, but rather because it is fast, and because communities like this exist.


Q. Are you part of this community for support/or to help /to offer suggestions? Why are you a part of the community?
A. All of the above.


Q. Is “Coping-With-Epilepsy.com” more than a community to you?
A. I'm not sure what "more than a community" means. It's everything a great community can be, short of being able to give me a lift when I have a flat tire. I like to think of CWE as a dinner party among friends, and friends of friends. We are at the dinner party because of our connection to epilepsy. We stay because of the support we receive, the connections we make, the new people and information we encounter, and, of course, for the entertainment. (The coffee, not so much).


Q. What other sites do you go to look for support/help? Or do you go to any other sites?
A. I don't go to other epilepsy sites, except occasionally the epilepsy foundation, for things like the physician database.


Q. Have you ever been to Epilepsy Advocate? I also researched this site but there does not seem to be a message board? Is this a reason you do/do not go to the site?
A. No, I'm not aware of EA.


Q. Is there a certain language to this community? I noticed you all use "E" as a slang word for Epilepsy. Are there any others?
A. See the links that Bernard provided in his response.

 

[Rae1889]

Welcome and good luck on your project

Q. What do you consider a member of the community?
A. Similar to what Bernard said. Anyone who is her without malice.

Q. Do patients/community members suggest doctors or specialists to go to?
A. Occasionally. Usually just posting a list of neuros/treatment centers in the persons area and letting them chose from there.


Q. Do doctors join this community? Have you ever experienced a Doctor on this community? What was it like? Helpful?
A. What Nakamova said, and Bernard


Q. Does this community offer treatments?
A. Nope. But there are some banner ads at the top that CWE registered members get discounts on.


Q. Has the community helped you treat epilepsy? Why do you continue to come back and help?
A. SAME AS NAKAMOVA

Q. Do you look to the Internet for help and why? Do you do this because it is confidential?
A. Both. I look for help because I had no one else in my real life with knowledge in this subjet

Q. Are you part of this community for support/or to help /to offer suggestions? Why are you a part of the community?
A. All of the above.


Q. Is “Coping-With-Epilepsy.com” more than a community to you?
A. Yes. It is a network of friends, and its some place I can refer to as a home. I feel like I have family her as well. because they understand more than my family does.

Q. What other sites do you go to look for support/help? Or do you go to any other sites?
A. I don't go to other epilepsy sites, because they are not as easy to navigate, nor are they as friendly in my opinion


Q. Have you ever been to Epilepsy Advocate? I also researched this site but there does not seem to be a message board? Is this a reason you do/do not go to the site?
A. No, I'm not aware of EA either.


Q. Is there a certain language to this community? I noticed you all use "E" as a slang word for Epilepsy. Are there any others?
A. See the links that Bernard provided in his response. there are quite a few short cuts to writing all the long words.

 

[occb]

What do you consider a member of the community? (Someone who visits often, Someone who registered or Someone who continues to offer help and support.)
Anybody who joins who isgenuinely looking for help/support, or to help/support. We're all in this together.

Do patients/community members suggest doctors or specialists to go to?Not that I've noticed.

Do doctors join this community? Have you ever experienced a Doctor on this community? What was it like? Helpful?Dr Arvind is the only one I've met, and he's been extremely informative and helpful. He also has a keen curiosity about unusual experiences. There's also a newer member who was a medic? EMT? I'm not entirely sure right now -- anyway, he's been very informative as well.

Does this community offer treatments?No.

Has the community helped you treat epilepsy? Why do you continue to come back and help?This community is helping my partner and I weave our way through the medical establishement, and seek an answer for his health problems.

Do you look to the Internet for help and why? Do you do this because it is
confidential?I go online for help, but not because it's confidential, but because I want to understand the issue, what to pay attention to, and find what I can do to help my partner. There is tons of good and bad information out there, but at least it's out there, since I don't find the doctors I've dealt with are very forthcoming.

Are you part of this community for support/or to help /to offer suggestions? Why are you a part of the community? My partner has had health issues since childhood, which we now think is E, but he has yet to be diagnosed. I come here for support, suggestions on how to tackle issues of personal, medical and burocratic sorts. I also try to support others while I'm here. Some of the toughest problems when dealing with chronic health issues is finding people who understand what you're going through, and can help you from their own experiences.

Is “Coping-With-Epilepsy.com” more than a community to you?
What have you gained from all this?I've gained friends, and a better understanding of the kinds of issues that my partner faces in daily life. This place is like a second family.

What other sites do you go to look for support/help? Or do you go to any other sites? none.

Have you ever been to Epilepsy Advocate? I also researched this site but there does not seem to be a message board? Is this a reason you do/do not go to the site? I only briefly looked for EA after I read this question -- it seems to be more of a magazine (I could be wrong), rather than an online community. I prefer interactivity when I go online.

Is there a certain language to this community? I noticed you all use "E" as a slang word for Epilepsy. Are there any others? The same kinds of med slang as on other health support forums, I guess.

 

[RobinN]

What do you consider a member of the community? (Someone who visits often, Someone who registered or Someone who continues to offer help and support.)
A: someone who is a frequent user and one that cares about others on the forum

Do patients/community members suggest doctors or specialists to go to?
A: Occasionally, but this is not a frequent occurrence. Different insurance and geography, I find to be the major reason that this is not common.

Do doctors join this community? Have you ever experienced a Doctor on this community? What was it like? Helpful?
A: We have a couple doctors that are members. It is great when they participate in a conversation. It is helpful. Alternatives are not discussed much in the doctor's office, but to be supported in looking outside of the box is reassuring.

Does this community offer treatments?
A: We do not offer treatments, but we do share what is or isn't working in our treatment. What we offer is support.

Has the community helped you treat epilepsy? Why do you continue to come back and help?
A: I have learned new therapies here at CWE, and also offered research found on others. When a therapy is considered, or attempted, other members share their research or experience.
I continue to come back because when I was at a loss for help, this forum and the host were there to offer support and a way to find answers. I want to share that with others. It can be a very helpless place to be. A terrible feeling and I want others to know that they are not alone.
I also believe 100% in the quote in my signature.

Do you look to the Internet for help and why? Do you do this because it is
confidential?
A: I look to the internet because far too much information is kept from me in the doctors office. Or.. they simply are not current in knowing about whole body health.
I have never considered the fact that it is confidential. In fact anyone can see what I write.

Are you part of this community for support/or to help /to offer suggestions? Why are you a part of the community?
A: All of the above.

Is “Coping-With-Epilepsy.com” more than a community to you?
What have you gained from all this?
A: it is the one place that I can use as a sounding board. It is the one place that I can discuss the challenges that face me dealing with a child with epilepsy. Family members do not understand, and can not have a meaningful conversation. Doctors give you about 8 min max to ask your questions before they begin to become impatient.
CWE is also becoming a part of my family. They share the joys and the setbacks with me. More than many in my immediate family do.

What other sites do you go to look for support/help? Or do you go to any other sites?
A: I use to frequent other E sites but I decided not to spread myself around much. I do occasionally share my story elsewhere, and some people approach me offline.

Have you ever been to Epilepsy Advocate? I also researched this site but there does not seem to be a message board? Is this a reason you do/do not go to the site?
A: I have never been to Epilepsy Advocate. I also do not like to frequent forums that are sponsored by Pharmaceutical companies. I applaud Bernard for not allowing that here.

Is there a certain language to this community? I noticed you all use "E" as a slang word for Epilepsy. Are there any others?
There are a few, but many times we have to clarify, because there are many new members that do not always know what the slang is. Bernard has created a way for the software to figure out the abbreviations and fill in the blanks. I choose to spell it out.

 

[Endless]

Q. What do you consider a member of the community?
Anyone who comes with an open mind to learn, contribute, support each other. Some come here with other motives and to them, your reward is waiting for you in your next life.

Q. Do patients/community members suggest doctors or specialists to go to?
I've never seen this, but would welcome it.

Q. Do doctors join this community? Have you ever experienced a Doctor on this community? What was it like? Helpful?
I haven't seen any Dr's here, but I'd welcome this for both the wisdom they'd impart and for what they'd learn about what it's like to have epilepsy. I think many dr's could gain more compassion by understanding what it's like to walk in our shoes.

Q. Does this community offer treatments?
No. But members help us understand them a little better when our docs rush through the explanation during our office visits, or when the doc used really BIG WORDS when we were in a brain fog.

Q. Has the community helped you treat epilepsy? Why do you continue to come back and help?
The community helped me understand how what I eat and when, what supplements I take and when, etc. affects my medication and how I feel. For example before I came here I had no idea I had to take calcium tabs at least 2 hours away from my AEDs. My doctor never told me that (I confirmed it with him later). That little tidbit was worth a million, because it explained some possible variation I was feeling in the meds.

Q. Do you look to the Internet for help and why? Do you do this because it is confidential?
The internet isn't confidental. Quite the opposite.


Q. Are you part of this community for support/or to help /to offer suggestions? Why are you a part of the community?
To help. To learn. One plus one equals 11.


Q. Is “Coping-With-Epilepsy.com” more than a community to you? What have you gained from all this?
Its a family that's made me stronger. Seeing how others have struggled and made it through has inspired me to make it through, too.


Q. What other sites do you go to look for support/help? Or do you go to any other sites?
I have gone to other forums, too, but I like this one best.


Q. Have you ever been to Epilepsy Advocate? I also researched this site but there does not seem to be a message board? Is this a reason you do/do not go to the site?
Yep.

Q. Is there a certain language to this community? I noticed you all use "E" as a slang word for Epilepsy. Are there any others?
Well, when I can't spell something I like to use parentheses with s.p. (with no periods after the s.p.) and a question mark, but the forum automatically changes it into "simple partial." It drives me nuts! People also seem to use t/c, s/p, c/p.

 

[Meetz1064]

What do you consider a member of the community? (Someone who visits often, Someone who registered or Someone who continues to offer help and support.) To me, a community member is someone who joins, learns, and hopefully participates in the forum--preferably in a non-troll or spammer-like behavior.

Do patients/community members suggest doctors or specialists to go to?
Not generally, as we all live in different areas of the world. However, some of us do provide links to help find doctor/specialists for those that need them.

Do doctors join this community? Have you ever experienced a Doctor on this community? What was it like? Helpful?
Yes, we do have a few here, in particular DrArvind. They each have their own specialty, and their input is greatly appreciated.

Does this community offer treatments? No.

Has the community helped you treat epilepsy? Why do you continue to come back and help? Yes. My E has been aggravated by many things over the years but I didn't realize just how much food had been playing into it, though I had been messing around with diet before---I just didn't make the connection--til I landed here. Then things began to make sense. I come back here because of the atmosphere, the people and the many things I learn.

Do you look to the Internet for help and why? Do you do this because it is
confidential? Yes, because quite often regular doctors can't be bothered to help you find the information that you think might be right, or they tend to treat you like a fool for asking. Confidentiality is another plus, although it can't always be guaranteed.

Are you part of this community for support/or to help /to offer suggestions? Why are you a part of the community?
I am here for all, but my E is fairly well controlled, so I tend to help more than I require support. I am here as a part of the community because I thoroughly enjoy it.

Is “Coping-With-Epilepsy.com” more than a community to you?
What have you gained from all this? CWE is my family---my own family does not understand diddly squat even though I've explained over and over.....and here, everyone does.

What other sites do you go to look for support/help? Or do you go to any other sites? I've been to a number of other sites, and I am the most comfortable here. It's based on a dinner party format, and the answers for questions are within easy reach.......so I pop into one or two others occasionally, but not often.

Have you ever been to Epilepsy Advocate? I also researched this site but there does not seem to be a message board? Is this a reason you do/do not go to the site? Once. Didn't like it.

Is there a certain language to this community? I noticed you all use "E" as a slang word for Epilepsy. Are there any others? We do have a "language" but it's not really that different than what you'd find in any other E community.