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Superior oblique myokymia[email protected] 
  
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General : Change is more than a pocketful of nickes
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 Message 1 of 30 in Discussion 
From: juds  (Original Message)Sent: 10/17/2008 5:09 AM
Over two and a half years ago, rumors began appearing in Groups that this kind of service provided by MSN was going to  go away, disappear, no longer be available.  I've not mentioned it because we all knew that it was going to be in the future sometime.  Well, the future has arrived.  MSN Groups will be gone come next February.  Quite frankly, this resource was too good to be true and we knew that its days were numbered.
 
There might be an opportunity to transition to the Windows Live Spaces, but they are just like the other social networking sites. 
 
MSN might be launching another kind of groups function, but no one is absolutely sure.  It is still in beta testing and might not even happen, no matter what assurances some people are giving.  Some information about them can be found on this link to a Wikipedia page regarding the MSN Windows Live Groups that is supposed to launch near the middle of next month.
 
We already have several other presences on the Internet, but they were always intended to be portals to this site.  Even though all of the other available resources for us are mostly message forums, we can have separate forums for each of our information pages.  Yes, there won't be the graphics abilities, but all the information can be transferred to these less-than-pretty pages.  Please don't judge them by how scantly they are created.  They are simply there for saving our name and for 'just in case', which might be now.
 
This is our forum site at ProBoards54:
http://sompeople.proboards54.com/index.cgi
 
This is our forum site at Powerboards:
http://s3.freepowerboards.com/sompeople/index.php?c=1
I don't know what is currently wrong with this site, but it will not load properly.  Hoping that it is just a momentary glitch.
 
We also have access to several blog sites, one of which is at Blogspot.  It is, well, it's a blog, and we can set up categories for our informational pages, but it will be ponderous.  Sigh.
http://superiorobliquemyokymia.blogspot.com/
 
Now, here are two sites that are a bit more like what we have here...but different.  Actually, really different.   Both of them are e-mail based sites.
http://health.groups.yahoo.com/group/SOMPeople/
and
:
Another forum site that we have is at Multiply:
http://sompeoplesupport.multiply.com/
 
However, even though it is brand-new, I am liking our website at wetpaint.  This site has plenty of room for our information pages, a discussion option, calendars, photo gallery options, schedules and more. 
http://sompeople.wetpaint.com
 
Please go and take a look at these and post your thoughts in this thread.  Again, keep in mind that all of them have very little content at this time, and all will have more advertising than we are used to seeing.  But, that's the consequence of having something for free. 
 
At this time, we may have to depend on some of our portal sites in order for people to find us.  I am fairly certain that our friend at Wikipedia will be glad to link to us from our article there, but you never know.  We will keep our links at MGH and other health resource sites, even though it won't be as easy as someone typing SOM into a browser.  Once we begin using another site regularly, it will appear in searches. 
 
I welcome any thoughts you might have about all of this.  Whatever happens and in whichever direction we go, please do not worry about us losing our support group.  We have struggled too long and hard to give up easily.  Plus, we still own a couple of SOMPeople domain names. 


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Reply
 Message 16 of 30 in Discussion 
From: MSN Nicknamemad-eye-annieSent: 10/26/2008 4:08 PM
Kel, honor and Godspeed to your son.  Mine is home permanently and teaching his third graders.  He's 40 now and has a percentage of disability.  I still fly my banners of absolute support for anybody who goes off to defend our country and that has absolutely nothing to do with my thoughts about war. 
 
Juds, do you think all of our stuff will transfer over to the new site of your choice?  Because if you need any threads copied or anything like that, here I am.  Now, my techie knowledge amazes my husband but is a cause for hilarity among my offspring.  (Witness my periodic rants on this site when I was fighting my way through a conversion to Vista.) Ahem.  However, if anybody gives me a step-by-step I can and will do it.   We seem to have some time to make this change, but time has a way of flitting by, and I am one of those who no longer works.  Looking at the economnic mess of the past month or two, I wonder if I could have hung on and retired a little later, but so be it.  I'd be pleased to help if you need some.
 
This is not only an amazing resource but a gathering of friends, and the most positive source of on-line support that I have seen anywhere.  It sets such a good tone!  A site without a dedicated director person is like a school with a bad principal.  And have I ever been there!  If there are jobs to be done, tell me.      Annie 

Reply
 Message 17 of 30 in Discussion 
From: judsSent: 10/27/2008 2:25 PM
I thought that you might be willing to help, and I appreciate the offer.  I will be transferring our content to several new sites.  They are mostly forum formats, but I think that we will become accustomed to using them in short order. 
 
My biggest concern is that we not lose the content of our message threads.  Saving those, even those that do not concern SOM, is one of my top priorities.  You won't have any trouble with it, it's as easy breezy as it gets. 
 
I will also be activating our two domain names, but I'm not sure how much I want to invest in sites for them.  At this moment, I am thinking that I will put a small amount of content on them, teasers actually, and allow them to be portals to the place where we eventually settle.  And, that is also where volunteer members enter the picture.  We are going to have to casually use a couple of those sites, where I have already registered (some several years ago, and more within the past few weeks) just to find out if they are user friendly enough.
 
My current favorite for content capabilities is WetPaint, even though it is a wiki.  I think that there is a way to moderate who joins, but until I am absolutely sure about that, I have locked the site, even though one can still view it.
 
My second favorite is Yuku.  The link is in message #12.  But, aside from you, we still haven't heard from anyone else about how they feel about our options, which isn't a problem this early in the process.
 
I just do not want anyone to worry their pretty little heads over any of this, even when the transitition seems to cause the loss of some of our members.  We have over 130 members, most of whom do not participate in any way on our site.  Some of them haven't ever even responded to their welcome message.  I think that a fair portion of them joined, received what they needed from us and have moved on in some way and that we will no longer be able to contact them.  If they need us again in the future, then they will surely be able to find us in our new home.
 
As for time, nature abhors a vacuum so let us hope that we fill it with stayin' alive, stayin' alive, uh...uh...uh...uh...stayin' aliiiiiiiive.  Sorry, but a report just came out that that song is the correct beat/pace for effective performance of CPR.  Another one bites the dust is another tune with the same qualities, but just doesn't fit the mood of trying to save a life.  I suppose you could hum it, AOBTD, but you probably shouldn't sing the lyrics.
 
As for principals, we had one that confided to me that he never stayed in any school longer than two years, which I thought was disgusting, not only for our sweet, little school, but for his wife and two small children.  Turns out it wasn't a confidence, as he seemed to be quite proud of it.  He wasn't very good at the old job thing, sort of like a mad scientist who wanted to experiment with all kinds of goofy ideas and, to be honest, we were all quite relieved when his self-imposed time limit expired and he moved on to another unsuspecting location.  I also think that he stuck to small schools like ours because we were less likely to make an issue of his hop, skip and jump lifestyle.

Reply
 Message 18 of 30 in Discussion 
From: judsSent: 10/29/2008 2:27 AM
 
Okeky-dokey.  This is the link to one of the sites I started at Yuku.  They have a lot of really cool skins, which is what they call their themes, but I chose a plain one because it has a left-hand side-bar.  That side-bar would make it visually similar to what we have here.  I just haven't had time to do anything with it yet.
 
What I have done is to put up three forums.  Take a look and let me know what you think.

Reply
 Message 19 of 30 in Discussion 
From: MSN Nicknamemad-eye-annieSent: 10/29/2008 6:55 AM
Well, everything new takes some getting used to, but probably we could snuggle in here and feel at home.  The format is easy on the eyes from what I can tell--and wouldn't we want that for sure?  Nice smilies, too.  We do need that for the range of emotions that members are used to expressing!  See if your wizardry can make it do what you think it needs to do. 
 
Can't yet tell what the threads would look like--if threads are possible.  Or would the posts look a little more like blog posts?
Being used to finding a discussion, then the thread, and a very clear listing of messages, we are possibly a little spoiled.  But maybe all that can be approximated in the Yuku format as the SOM site activates and develops.  
 
I hope we can save a lot of our stuff.  There's some truly deathless prose within these zillion entries!  Go, Juds.
 
Annie

Reply
 Message 20 of 30 in Discussion 
From: MSN NicknameTonyR004Sent: 10/29/2008 2:47 PM
Annie you should sleep sometime. But I did go to yuku and looked around. Juds you've done a great job setting it up to look like our current site. I wish I could offer some assistance but while my old engineering degree ought to give me some tendency toward techi-ness, it doesn't. So anyway, I have a warm fuzzy feeling that we will be able to find a solution. Thanks very much for that.

Reply
 Message 21 of 30 in Discussion 
From: judsSent: 10/29/2008 3:38 PM
My favorite, for appearance, features and familiarity is still WetPaint.  The only problem there is that it is a wiki and fraught with all the attendant problems.  However, I'm not giving up on it, and will keep you posted on how it goes there.
 
I really think, though, that the Yuku site is likely to be our next (and, hopefully, forever home, but we all know how that sort of thing goes, don't we) regular use site.  Its best feature is the behind-the-scenes options for management.  They are very well developed, which is going to make maintaining the site very easy.
 
Annie, the posts are going to look almost exactly like the message threads here.  Within the General forum (message board here), members can post topics (threads here) which will cascade down as they do here on this site.  Replies to topics (threads here) will cascade verrtically as well.  Topics (threads) just won't be so tightly packed and we have to wait until there are a quantity of them before we find out how many will show on a single page.  I am guessing fewer than the fifty that show here, but since our group is relatively quiet (except for you!!!! and me, too, I guess) that really shouldn't be a problem.
 
I am in the process of archiving reasonably significant information from our message boards and saving links.  I'm not worried about that too much, because when the time comes, I will be migrating this group to Multiply.com.  Even though we won't be meeting there, I will be able to use it as a resource.  I do have to share with you that the groups that are currently migrating to the new service are not having much success with the transition.  Some of the larger groups (which we are not) are losing years of message board threads.  One of them lost six years worth and it is no surprise that they are looking for another kind of format.  We have over three thousand individual posts, fewer threads of course.  One group to which I belong has over two million posts.  How's that for a mind-blower?
 
The blog formatat Multiply is different for us, and I know that it will be difficult for most of us to navigate.  It's hard enough to engage our members and I'm not willing to put another obstacle in their path.  Life as a SOMer is terrible enought without all that that trouble and angst.
 
By the time that we make the official move, after the first of the year, everyone should be comfortable with our new home.

Reply
 Message 22 of 30 in Discussion 
From: MSN Nicknamemad-eye-annieSent: 10/29/2008 7:13 PM
Cool. But I think you had better add Tony to recent and frequent list now.  It all seems to depend on who needs to post, who likes to, and whazzup.  For a number of reasons, Tony, I have always been a night person.  I swear I could build a house (or used to be able to build a house) myself if I could only work between maybe 1:00 AM and 4:30 AM.  Probably much of that goes back those many years with heavy-duty SOM, and my distinct preference for low light.  Or possibly, even though Juds eschews Andrew L. Webber , I am indeed motivated by The Music of the Night.  It's lots nicer now not having to be at work at 7:15 AM--starting time for staff at the school where my office was based.  AAAAKKKKK.         Annie 

Reply
 Message 23 of 30 in Discussion 
From: judsSent: 10/29/2008 8:08 PM
Eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee...

Reply
 Message 24 of 30 in Discussion 
From: MSN Nicknamekerbear75Sent: 10/30/2008 3:08 PM
Hello all,  okay I confess - this whole thing has got me seriously confused!  From the first time you mentioned it Juds I have just kind of ignored it and pretended it wasn't real - kind of do that whole denial thing when I don't understand something (current meds not helping the situation).  I am just so not technologically minded - thank goodness for people like you Juds. Standing ovation!!!!! I checked out the Yuku site and think it looks great.  Here is my honest opinion - I have faith that you will make the best decision for us.  I don't really care about the format as long as it is somewhat user friendly and all of you nice people are still around.  Just like Annie offered, if there is anything that I can do to help let me know. I would definitely need some clear step by step directions but I do have the time as I am still off work.  I am at your service if needed or wanted.  Let me know.  Kerry 

Reply
 Message 25 of 30 in Discussion 
From: judsSent: 10/31/2008 12:15 AM
Kerry, I'm with you as far as using denial as front-line response.
 
If you think that the Yuku site looks good, you should see it now.  I found a more colourful skin/theme on their site and then made a logo for us using the colours in that skin.  This screen shot is tiny, but I'm trying to conserve storage space.  With the end of MSN Groups coming in a few months, I'm not interested in getting more at this point.
 
 
I found out today that we won't be found on Yuku's search for communities until we exceed 100 posts.  So, I encourage anyone who has a bit of extra time to apply to the site and start posting on the main message board which is titled:
 
SOMLife - Our Message Board
 
Right now, it is in the Guidelines and Resources category, but I will be changing that this evening to its own category.  Will probably name it something about communication.  Or something equally lame, but easy for people to understand and find.  We have several message boards here, and I think that would be a good idea to do there, you know, for the chocolate and joke boards, books, recipes and absolutely anthing else that you guys would like to have.
 
One of the nice things about that site is that we can keep an entire category private, available for viewing only by registered members.  Yes, you're reading that correctly, only members will be able to read anything of a personal nature that we feel like sharing.  That option is very easy for me to structure and is one of the reasons that I think that Yuku will be our landing place.  That private category is where we will have forums for our SOM history, medications, abstracts and links.
 
Another cool thing is that each member will have their own profile page, where they can put all kinds of information about themselves.  You can choose a theme, and enable all kinds of options to share your favorite movies, television programs, books, photos, quotes and tons more.  I've been learning how to set up our site and haven't had a chance to noodle around there.  For members like you and Annie, who currently have a lot of extra time, that could be fun for you.
 
And, yes, I will probably be needing some help in the coming months, but for now I have to educate myself about how the format works before I can explain it to anyone else, although, I do have to admit that it is extraordinarily easy to do.  I will also need some help re-registering us on all the search engines and browsers.
 
I still haven't given up on WetPaint, but want to make sure that it is going to be as secure as we need it to be.  It's a lovely and fun format and I hope that it works out.
 
Anyway.  I have to get back over there and create the communication category and move the main message board to it and set up some more forums.  It is a bit slow-going because I am having to re-create each new page/forum.  If I copy and paste from here, all the images and formatting will dissolve when Groups are shuttered for good.
 
 

Reply
 Message 26 of 30 in Discussion 
From: MSN Nicknamekelbel59Sent: 11/2/2008 12:42 PM
Juds!  Is this yuku site ready to join?  I was looking at it, and it seems pretty cool, even reading the instructions to join.  However, where it says to click reply to a topic...where do they give you that option?  As I cannot find it.  I see nothing indicating how to apply on the actual board besides your instructions.  Help me please

Reply
 Message 27 of 30 in Discussion 
From: MSN Nicknamekelbel59Sent: 11/2/2008 12:49 PM
ummm never mind

Reply
 Message 28 of 30 in Discussion 
From: judsSent: 11/2/2008 3:02 PM
LOL
 
Anyway, to anyone who want to join over at Yuku, where it looks like we will be for a while, please, please, please, put a valid e-mail address in your application message.  The forums format is too iffy and not reliable enough for us to know exactly who is trying to join, and in this transitition period for MSN Groups, there are tons of people who will be creating and using nicknames identical, or nearly so, to what our members are using here to join the new groups and cause trouble. 
 
In the past two days I have been bamboozled (or the attempt was made) by five people (although I suspect that it was just one person making five creepoid attempts) who made application to our Yuku site.  In the process of deleting of them and their trashy posts, I think that I deleted one of our older members, one who has not posted here for a couple of years.  I have tried to contact him, but if it really is him and his feelings are bruised, he may not write back. 
 
Put your valid e-mail address in your application message.
Put your valid e-mail address in your application message.
Put your valid e-mail address in your application message.
Put your valid e-mail address in your application message.
Put your valid e-mail address in your application message.
 
We will absolutely have to verify membership over there, just like we have always done here to keep our group safe and spam and porn free.  What a mess.
 
I did put in the entry message that you need to do this, but there is so much going on there that I am certain that most people are going to miss that little sentence.  I will also be making pictorial tutorials to help people join.  But not today.  Monday or Tuesday night, probably.
 
Thanks, all!!!

Reply
 Message 29 of 30 in Discussion 
From: judsSent: 11/6/2008 12:16 AM
Still have to move:
Abstracts
Medications charts, which need serious updating anyway
History archive
Documents
Both current history boards
Message boards, but not all of it will be transferred, and will probably be put into a separate site that will be available only to members.
 
If you have a photo album, you can create one at Yuku, or you can use PhotoBucket, as there is an icon for PB right on the posting forms.  I will probably be transferring all of our welcome and other images there.
 
We are more than a third of the way towards havine sufficient posts to be searchable.  Any of you who have joined there are welcome to post away to bring those numbers up.
 
I'm still unable to figure out how to make members there available to each other for e-mailing and the like.
 
I'm tired and am going to relax for the rest of the evening by checking to make sure that links are working.  Right after I post welcome messages to Tony, Kel and Emma and Steve. 

Reply
 Message 30 of 30 in Discussion 
From: MSN Nicknamemad-eye-annieSent: 11/7/2008 5:56 AM
I tried Yuku, everybody, and it's pretty easy to sign up.  I only hit one small glitch and Juds steered me smoothly into getting started.  We will be fine at Yuku.  We have cool new things including spellcheck!  Thank heavens.  It's going to be fun to explore and find all the new bells and whistles. All fears that we might lose touch are hereby cancelled.  Drumroll for the Mistress of the Web!             Annie

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