New Tools - Blog and Community Forum Tagging
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UPDATED: Sat, 09/15/2007 - 6:42am
epi_help
my.epilepsy.com Updates
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Welcome to My.Epilepsy.Com!
Your forum to connect, share, relax and learn!
Look around and join in on discussions, create your online blog or journal, and chat away! Do you have a question about epilepsy? Ask Epilepsy Help!
Latest Updates
- Add an iGoogle Gadget: Have quicker access to my.epilepsy.com blogs by adding a google gadget to your Google homepage! Sign up for our latest feature and keep up to date with the most recent blog activity when you visit Google.com.
- Choose a User Avator or Photo: Add pictures or avatars to your user name. Visit the Manage My Account link to choose your avator or upload your own photo.
- Personalize your home page: Visit "my account" and check the block features you would like displayed on your homepage. Then update your account! Unchecking a feature will remove it from the page.
- Fast Access to Recent Discussions: On the home page or the Community Forum section, you'll find a list of recent discussions. Join in by clicking on the discussion thread. Or look around the community by clicking on the "Community Forum" button to the top right of each page. Here you will find a list of all topic groups. Click on each one to find discussion threads of interest. Or add a new discussion thread!
- Easy Access to Blogs: Want to start a blog or browse around? Click on the "Blog" button to the top right of each page. On the right side is an index of all blogs in alphabetical order. Check these out, or start your own!
- Chat Room Upgrade!: Click on the "Chat Room" button to the top right of each page and go directly to the Chat Room page. Join the chats in session or launch a new room to chat in! If you are having problems entering the chat, read the instructions below. You may need to make adjustments to your browser. For example, you must have javascript enabled browser and turn off any pop-up blocker for the chat to work properly. To see if your browser will work with the chat, take a look at the Javaquick Tour. If you have Windows Vista installed, follow the instructions on the chat portal. Then come on in and have fun!
- Buddy Lists: When you see someone in the Online Users List that you'd like to add to your Buddy List, just click their name. In addition to seeing more information about them, you'll find a link to their blog and a button which will add them as your Buddy List. Once on your list, you'll be notified whenever they're online and when they're available for chat.
- Instant Messaging: Hold private chats with other members. Once you add someone to your Buddy List, you'll see their name in the top right corner of your screen. If they're available for chat, an "Available" link will appear. Simply click on that link and the instant message window will open. When someone wants to chat with you, you'll see their chat request pop up just under your buddy list. You can choose to allow anyone to Instant Message you or restrict your Instant Messages only to those on your Buddy List. Please note that Safari is not supported for certain features on this site. Safari users may notice that they only receive IMs but can not send them to people using other browsers.
- Epilepsy Help: Ask questions about epilepsy, how it affects people, or ways to make management easier. General questions will be answered by our Resource Specialist. Click on the "Epilepsy Help" button to the top right of each page to launch this feature. Ask a question or click on an "Information Topic" (on the right side) to view the growing library of Q&As.
- Inst Poll: Let us know what you think and about your experiences with seizures, by answering an Insta Poll! Questions are changed on a regular basis and past poll results available for viewing. This is just one more way to work together and find out what is important to people. Send in ideas for poll questions too!
- Emailed Comments: Edit your account and receive an email when someone responds to your forum post or blog. You can also sign up to receive an email whenever a post or blog of interest to you is updated. Just subscribe to that thread or post and you'll be notified when it's been updated! Just choose My Account/Edit/Email Notifications to take advantage of this feature.
More additions and improvements are on the way!
Thanks,
My.Epilepsy.com Team
By epi_help at Fri, 01/20/2006 - 12:00am | 20169 views | 60 comments
Topic: Epilepsy.com Help
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Recent Comments on this Discussion
Hi everyone!
Getting ready to bring up the new site! I think you'll all love it.. I will warn everyone - change can be hard for many of us. But the new look and features is exciting I think! Let me share a few tidbits..
Don't forget the community will be offline tomorrow, Friday so we can move all this content over. The site will come back up Saturday. When you first log on, you'll be asked to sign in and create an account. This account will give you access to deeper levels of the home pages and content information, as well as full access to the community forum as you have now. You can use the same user name and password that you have now. But make sure to update your account as there is new information and subscriptions to features that you'll want to take advantage of.
Once logged on, you can go anywhere. While operating systems have been tested and work on the site, there's always a few bugs that occur whenever a change happens. We'll have people online on the weekend to help out, so if you are having any troubles, IM or email us. Here's a few contact emails to use..
webmaster@epilepsytdp.org or webmaster@zoomedia.com-someone can always get this email on weekend
moderator@epilepsytdp.org- this email goes to a few different people
patty@epilepsytdp.org - that's me and I'll get back to you as soon as I can (I'm traveling Saturday but will be around the rest of the weekend)
If you are online and want to IM/PM someone - look for admin, david jost, davidmickle, or epi_help..or anyone else from Zoomedia!
Well, see you around this weekend I hope and enjoy the night!
Epi_help
Chat News
** SYSTEM NOTICE **
On Tuesday, October 16, the Chat Room will be offline for regular
maintenance between 7:00 - 9:00 am, US Pacific time (GMT - 7:00). We
apologize for any inconvenience.
Your my.epilepsy.com team!
I am new to this site...has anyone had experience with using the generic formulation of phenytoin sodium (Mylan) vs. Dilantin (Parke-Davis)?
There are documented differences in the levels of drug when a person switches from brand dilantin to generic phenytoin, or from generic to dilantin. While for some people it may not make a difference, for others it can result in appreciable differences in levels that can affect seizure control or side effects. People who are using dilantin or the generic phenytoin should talk to their doctor and pharmacist and make sure they can stay on the same formulation and not switch back and forth from brand to generic. If changes in seizure control or side effects occur, talk to the doctor. Sticking just to brand may be needed.
This has been reported with other generics too, but there's not enough data to know how often or how much of a problem it can be for most of the other drugs. The effect with Dilantin is better known.
Hope this helps!
Epi_help
Another Note to Users..
Anyone interested in testing out an online seizure diary? I need some volunteers to test out a seizure diary and give us some feedback. I can set up a conference call to give an online demo to those interested.
Volunteers? Please email us at
moderator@epilepsytdp.org
patty@epilepsytdp.org
webmaster@zoomedia.com
Thanks very much!
Epi_help
Hi everyone!
Epilepsy.com is always looking at ways to better serve your needs. New features are in the works - but we need your feedback first! If you can take a few moments to visit the feedback form and send us your thoughts. Give us your Feedback
Thanks so much... As always, we appreciate your help and ideas!
Epi_help
Resource Specialist
do you know what it would take or how epilepsy.com can get some one to start a epilepsy awareness month. you know like they have for heart disease, breast cancer etc. people die from epilepsy too. i think it would be great!!!!!
November is epilepsy awareness month in the United States. I think it is worldwide, but I should check on that. However, we need to do a lot more to make people aware of this!
thank you i had no idea. i agree i am probably not the only one since we were talking about it in chat and no one knew!!!!! is there a way you can get the word out and also get who ever orginanzes it in the u.s.a to be more vocal?
thak you,
banffgirl
Will do.. how about community members sending in their ideas? Sometimes it depends on people locally contacting their media outlets and feeding the story.. If you send in ideas here, I'll pass them along!
Epi_help
Hi Banffgirl. Here in Canada Epilepsy Awareness Month is organized by Epilepsy Canada.
Also, Shoppers Drug Mart allows Optimum points to be donated to both the BC Epilepsy Society and Epilepsy Ontario but I'm not sure about Epilepsy Canada.
March is Epilepsy Awareness Month here in Canada.
HI everyone,
Sorry for any inconvenience yesterday (Saturday)! We had an unexpected system problem that closed down my.epilepsy.com for a number of hours. We were up and running last night though and I saw many of you make it to chat. Please know that everyone is working hard to prevent these problems from occurring again.
Thanks very much for your patience and support!
New Chat Coming!
Hi everyone! We have a chat upgrade coming that I hope you'll all like. You'll be able to have different chat rooms - right now we are putting up a room for -
EpiTalk - a place to chat about epilepsy and related issues...
and the Corner Booth - a place to check in with your friends, make new ones, and chat about non-epilepsy related issues.
I hope the different rooms will ease some congestion and let people talk about issues of concern without losing conversations.
We have lots of new members all the time, so if you see someone in EpiTalk, stop by and say hi!
Lots of other features too - you can add emotions easier, use sounds, change back and forth between rooms, etc. You can also use the orange navigation button to the left and go check out something on the home page without leaving the chat, or go back to the main part of my.epilepsy.com more easily.
We are hoping this will be live by tonight. If for some reason, it can't be tonight, you'll see it first thing Monday am.
Let us know how you like it. If you have problems with it, email webmaster@epilepsytdp.org and moderator@epilepsytdp.org.
See you in chat!
Epi_help
Hi everyone!
Hope you enjoy the chat upgrades! We truly are sorry for problems that some users have had getting in to the chat. These problems did not show up on extensive testing of the changes and has occurred with a few combinations of operating systems and browsers. There are fixes though! Please see the entry portal of the chat for instructions on how to fix problems you may be having. If this doesn't work, send an email to webmaster@epilepsytdp.org with info about your operating system and browser.
The colored type may bother some people, while others like it. I believe that the users can change the color of their type and just receive in black type. However, to be on safe side, we will put a room up in chat that will say "No Color Chat" for anyone who does not want to chance colored type.
If this doesn't work, we can get rid of the colored type.
Keep us posted!
Epi_help
Hello!
I prefer colored fonts because it helps me with visual tracking of who is speaking. However, I only seem to be able to see black type. Despite setting font colors ,everything comes out black. Others in the room claim to see colors. Any ideas?
Mille grazie,
Sicilianna
"...Only God never changes." St. Theresa of Avila
I found that late last night.. it was working at first, but now is touchy. Webmasters working on it and hopefully will figure it out! Thanks for the feedback!
Hi epi. Wow it is so nice of you all to put so much effort into this. Looking forward to trying it out. Thank you.
New Medication Info!
Visit the home page and look under Seizure Medicines - you'll find downloadable sheets on many of the drugs.. more coming!
Also, what I am so psyched about - the International AED Name Database! For all our visitors from around the world, you can now look up the names of different drugs and what they are called in different countries, and find out the generic names as well as brand names used in the U.S. Since Epilepsy.com is located here in the U.S, we use different names for drugs than our users from other countries use. Hopefully this database will help us all!
Most important, let us know what you think and other ideas, needs and wants!
Epi_help
Hi everyone,
Great to see all the new people to the site! This is a great community of people - lots to learn and share! Once in a while I like to send reminders about parts of the site to people. So if you have heard this from me, please excuse me for repeating it. If it is new, then read on!
I hope everyone has had a chance to look at the Terms or Use for the site that tells you about the site and the user's obligations for using the site. It can be found at the bottom of the page or right here - Terms of Use
Children of all ages should talk to their parents first before using the site and read the account obligations. Children under age 13 should not be sharing personal information! If you are under age and have not talked to your parents, please do so and share the site with them! They may find this very helpful too!
User's account obligations ask that people be truthful about their information when signing up and using the site.
Please remember that people of all ages use the site. We don't monitor the site 24/7 but do come on periodically to help answer questions or direct people to resources, and to check in on the chat. We do keep a log of the chat for 1 week. These logs are looked at only if we receive a complaint and need to verify what happened. The logs do not track private chats. The logs are destroyed after 1 week unless there is an issue we are trying to address. We may see some chat changes shortly to make the chat better.
Thanks very much for your help and support! Browse around, chat, get and give support, and enjoy!
Epi_help
Resource Specialist
Have people seen the new feature of rating pages on the site? We hope you'lluse this to let us know what information is most helpful. While you are at it, send us notes of what you'd like to see more of, or what we are missing. Other ideas? Send along!
Take care,
Epi_help
For everyone considering college or returning to school - take a look at the scholarships available from UCB- click on top of page for an application. You can also check out the Epilepsy Foundation and local epilepsy organizations. Good luck!
Blog update!
I hope everyone likes the blogs and forum threads highlighted on the home page of www.epilepsy.com. We hope this helps people see what's on our minds and read the real issues of living with epilepsy.
We've made some minor changes to how the top blogs are chosen to be listed. The ratings are done automatically and include the top 10 blgs with the most views in the preceding 30 days. Only blogs that have been updated within 90 days are included. So, update away!
Send us your thoughts, feedback and new ideas..and thanks for sharing so much of yourselves with everyone!
Best wishes,
Epi_help
Epi_help...ther is a post that was listed this morning 04/14/07 and it is GROSS and NOT for the younger members. Can we maybe have it removed??? It is TOTALLY INAPROPRIATE.
Thank you,
Susan
please someone remove it,, thats nasty.............
Think I got it.. but will search site looking for more. If I missed any, email me! patty@epilepsytdp.org or moderator@epilepsytdp.org
New - Join Surgery Chat, Monday Feb 12 at 10 pm EST!
Join us in piloting a Surgery Chat hour this coming Monday, February 12th at 10 pm U.S East Coast time. If you are interested in surgery in any way, come on in! I'll be moderating the session and we'll see how it goes. The chat will NOT be a forum for medical advice, but a place to ask questions, get support, give support, and share experiences!
Since we only have 1 chat room right now, people who want to chat on other topics, or just hang out, should check in before or after this chat, or they can private message using the Epilepsy.com site.
If people like this, we'll try to do it each week. We can focus chats on other topics too, so if you have a favorite topic to address, let us know!
Hope to chat soon!
Epi_help
Epilepsy.com Resource Specialist
Hi everyone! thanks for joining last night.. great turnout! We'll work out bugs and do again. Stay tuned and we'll post times. Let me know other topics you want.
Epi_help
No surgery chat this week - Enjoy the holiday and we'll do one a week from now!
Hello...what is this new "RSS feed" option on the blogs?? I was told it started yesterday, but can't find anyone who knows what it is yet.
Thanks, smiles, and hugs,
Susan
When this is completely up and running, it will allow users the ability to subscribe to blogs of interest, and be notified whenever updates to that blog are made. It is not working yet so hold on! I'll put update and instructions on how to use when we have them..
Take care,
Epi_help
I notice that alot of your info that you inform people about, is dated at the bottom that usually is 2003.
Are you going to pass new info out or update with new info? For things are changing and getting better for people with epilepsy. I pass that info out and would be nice to see fresh and new info.
thanks for such a wonderful site.
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/
good point Lisa! The information is regularly reviewed and updated, and new info is being added all the time. Let me make sure revised/updated dates are put on regularly! Also, please know we are working on updating all of this.
Thanks for the feedback!
Epi_help
Thanks so much. For I have an Epilepsy Group and I pass info to others always.
thanks for a great site
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/
Hi!
Just wanted to check in and say THANK YOU for being such a great group!
We had a few technical glitches this week that appear all fixed - thanks for your patience and for your help alerting us when things weren't working the best.
This site is for you so keep on letting us know what works, what you would like to see here, and any other ideas you may have!
Take care,
Epi_help
Friday, 10/6/06
Some users have said they are having trouble getting on. Some work was done on the site last night, but things should be working fine today. However, some users may have an 'old cache' that adds to the problem. If you are having problems with the site today, please try to clean the cache and then reconnect to the site. If these issues still appear, we will be able to troubleshoot from there. Email webmaster if more problems!
Here is how to clean the cache in IE:
1.On the Internet Explorer 6 Tools menu, click Internet Options. The Internet Options box should open to the General tab.
2.On the General tab, in the Temporary Internet Files section, click the Delete Files button. This will delete all the files that are currently stored in your cache.
3.Click OK, and then click OK again.
4. Exit and relaunch the browser.
Here is how to clean the cache in firefox:
1. Click Tools and select Options.
2. Click the Privacy Icon.
3. Click Clear across from the Cache option.
4. Click Ok.
5. Exit and relaunch the browser.
Clearing Cache on Safari 1.0 / Safari 2.0 for Macintosh OS X
1. Open Safari.
2. Select Empty Cache under the Safari menu.
3. Click Empty on the Are you sure message box.
4. Exit and relaunch the browser.
Hope this works and sorry for any inconvenience!
Epi_help
Hi everyone!
The Zoomedia web folks have been diligently working to improve the chat functions and make it work more smoothly. Today they will 'push it live' - the changes, which are all technological fixes behind the scenes, will go on the live site for all to enjoy.
Please let us know if any continued or new problems with the chat. Add notes here or email webmaster@epilepsytdp.org!
Thanks to everyone who tested the chat function during the 'fixit' stage!
Thanks very much and have a great day!
Epi_help
Epilepsy.com Resource Specialist
Hi everyone!
I have added few updates to the general instructions for my.epilepsy.com. Here are the highlights!
1- Editing Posts:
If you wrote the original or 'parent' post on a thread, click on the Edit button on the top of the post. This will take you to an edit page where you can edit the text. When done, click on Submit button to post the revised text.
To edit a reply to a thread (you can only edit replies you wrote), you will find an Edit button on the BOTTOM of your reply. Click on this and edit away! Make sure you click on Submit to post the revised text when you are done.
2- If you are having trouble using the Chat, look for the Java Quick Tour to check your browser. If yo uare having trouble with Internet Explorer, Firefox works. If you enter chat but all of a sudden can't find the window, look at the bottom of your screen and see if it minimized. If so, just open up and chat away!
3- If you are having trouble sending people messages, see if you are using Safari. This is not supported for certain features on this site, including the IM. People using this may notice that they can get IM, but not send to people using other browsers.
Thanks to all who have sent us messages about what works, what doesn't. Continue to do this and we'll help you problem solve it, or fix it from this end if needed.
Have a great day and see you around the forum!
Epi_help
Epilepsy.com Resource Specialist