Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 I'm all for it - Mitch --- Olly <ollypool@...> wrote: > is there a way to create one for our group? > > i think it'll be a sucess if had 1 because find sma > chat room anywhere. > > Reply to this message people who are in favour of > this concept. > > Olly > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 I'd love if we had a chat room of our own. Can't the group leader, or anyone, just make a group for us on ? I'd prefer to have a chat room always open, so members can go in and chat with whoever is there at the time. I don't like the MDA scheduled chats. But we can have scheduled chat sessions too, about specific topics. I hope we can get this together. ~ Meg. (http://www.myspace.com/sexytear) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 I nominate Meg to organize this effort (find a place like IRC or similar chat room and schedule times/topics). Lori Meg W. wrote: > I'd love if we had a chat room of our own. Can't the group leader, or > anyone, just make a group for us on ? I'd prefer to have a chat > room always open, so members can go in and chat with whoever is there > at the time. I don't like the MDA scheduled chats. But we can have > scheduled chat sessions too, about specific topics. I hope we can get > this together. > > ~ Meg. > > (http://www.myspace.com/sexytear <http://www.myspace.com/sexytear>) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 Thanks a lot, Lori!!! Do you really want me in charge of this?! *LOL* But if everyone agrees, I’ll set up a chat room for this group. We’ll all vote on the topics because my head has too many wacky ideas that will probably be causing more tension among us! :-) I seem to be the group’s trouble maker. :-) ~ Meg. (http://www.myspace.com/sexytear) _____ From: [mailto: ] On Behalf Of Those Two Sent: Wednesday, August 30, 2006 3:57 PM Subject: Re: sma group chat room I nominate Meg to organize this effort (find a place like IRC or similar chat room and schedule times/topics). Lori Meg W. wrote: > I'd love if we had a chat room of our own. Can't the group leader, or > anyone, just make a group for us on ? I'd prefer to have a chat > room always open, so members can go in and chat with whoever is there > at the time. I don't like the MDA scheduled chats. But we can have > scheduled chat sessions too, about specific topics. I hope we can get > this together. > > ~ Meg. > > (http://www.myspace. <http://www.myspace.com/sexytear> com/sexytear <http://www.myspace. <http://www.myspace.com/sexytear> com/sexytear>) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 Meg, I think it would be wonderful of you to do this! Thank you a lot! Umm, I have been known to cause some trouble around here too. I've just been being good lately. Thanks again! Lori Meg W. wrote: > Thanks a lot, Lori!!! Do you really want me in charge of this?! > *LOL* > > But if everyone agrees, I’ll set up a chat room for this group. > > We’ll all vote on the topics because my head has too many wacky ideas > that will probably be causing more tension among us! :-) > > I seem to be the group’s trouble maker. :-) > > ~ Meg. > > (http://www.myspace.com/sexytear <http://www.myspace.com/sexytear>) > > _____ > > From: <mailto:%40> > [mailto: <mailto:%40>] > On Behalf Of Those Two > Sent: Wednesday, August 30, 2006 3:57 PM > <mailto:%40> > Subject: Re: sma group chat room > > I nominate Meg to organize this effort (find a place like IRC or > similar > chat room and schedule times/topics). > > Lori > > Meg W. wrote: > > > I'd love if we had a chat room of our own. Can't the group leader, > or > > anyone, just make a group for us on ? I'd prefer to have a chat > > room always open, so members can go in and chat with whoever is > there > > at the time. I don't like the MDA scheduled chats. But we can have > > scheduled chat sessions too, about specific topics. I hope we can > get > > this together. > > > > ~ Meg. > > > > (http://www.myspace. <http://www.myspace.com/sexytear > <http://www.myspace.com/sexytear>> com/sexytear > <http://www.myspace. <http://www.myspace.com/sexytear > <http://www.myspace.com/sexytear>> com/sexytear>) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 I second Meg's nomination! Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 I'm all for the chat room! I've been lurking around SMA Friends for a bit now. So, I guess I will introduce myself now. My name is Jami. I was diagnosed with Werdnig Hoffman at age 4 but now at 35 they say I have Type 3. I love meeting people and spend WAY to much time on the computer. I have used a chair most of my life but did walk for a bit when I was younger. I have learned so much just listening to the conversations that go on here. (ie - sores in hip bends, stem cell, etc) I look forward to getting to know you all and learning from each other from what works to what doesn't. Jami On 8/30/06, jennifer <nekrosys@...> wrote: > > I second Meg's nomination! > > Jenn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 > > > > I second Meg's nomination! > > > > Jenn > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 Why reinvent the wheel? There's a live chat room available at SMA Support. Here's the link to the page: http://www.smasupport.com/chat_list.htm It's the second option listed. I've used it before and it worked fine for me and the small group I was chatting with. > > is there a way to create one for our group? > > i think it'll be a sucess if had 1 because find sma chat room anywhere. > > Reply to this message people who are in favour of this concept. > > Olly > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 Hey Jami, I was originally diagnosed with Werdnig Hoffman's at age 2. Twenty-three years later, when I had a two year-old of my own, a specialist " upgraded " me to Type 2. (It's a running joke that if I live long enough, I'll get moved up the scale until I'm cured!) I never walked but I could stand a little if I had something to hold on to. Anyway, I'm now 36, married 15 years, and have 2 daughters - ages 9 & 13. Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 I, too, was diagnosed with Werdnig Hoffman at age 2. This was changed in 2001. My official diagnosis now reads " Spinal Muscular Atrophy Werdnig Hoffman Type 2 " ... go figure! They can't even make up their minds! IMO, I'm a type 3. I walked until age 14 when I had my spinal fusion. I am now 23 years old, a full-time graduate student at UC Berkeley for public policy, and part-time policy analyst working on Medicare Part D with a national law center. I live with my boyfriend, Joe, who is my primary caregiver. Welcome to the group, Jami! <3 Kendra > > Hey Jami, I was originally diagnosed with Werdnig Hoffman's at > age 2. Twenty-three years later, when I had a two year-old of > my own, a specialist " upgraded " me to Type 2. (It's a running > joke that if I live long enough, I'll get moved up the scale until > I'm cured!) I never walked but I could stand a little if I had > something to hold on to. Anyway, I'm now 36, married 15 years, > and have 2 daughters - ages 9 & 13. > > Jenn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 In a message dated 8/31/2006 11:22:44 AM Eastern Standard Time, nekrosys@... writes: Anyway, I'm now 36, married 15 years, and have 2 daughters - ages 9 & 13. Whoooa, how did I not know she turned 13? Good lord. I've been reading a lot about behavior/development and I learned age 3 is like a glimpse into the teenage years. Can I just say I want to resign from my current position? =P Amy Wife to Will 11/3/95 Mama to Olivia Isabelle 9/18/03 & Phineas Maximilian 11/30/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 I think Meg will be a great organizer for the chat. I think it's a great idea. Doesn't have that feature? Smiles, Kimi PS Meg, how'd the surgery go? Sorry abt the txt msges, I get charged for them b/c I do not have that plan. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 Ok, I went to that chat room and I was all alone. :-( Maybe people get there later on in the day, but many of us are online now, we could be chatting instead of writing these emails back and forth… …. what do we do now? :-) I checked on , and for now, the option to create a user-specific chatroom is not available. They are updating stuff. And another issue came up, they no longer use Java for chatrooms, but members have to have Messenger, and then connect to a chatroom through it. So now what? I don’t know anything about IRC. Unless we all have the same messenger we can connect to one another that way, and I like ’s messenger because it has voice chat, so those of us who have a hard time typing can speak. Or speak and type. Okay, anyone have any ideas/suggestions on how to make this work? Help me please. :-) ~ Meg. (http://www.myspace.com/sexytear) _____ From: [mailto: ] On Behalf Of B Sent: Thursday, August 31, 2006 8:43 AM Subject: Re: sma group chat room Why reinvent the wheel? There's a live chat room available at SMA Support. Here's the link to the page: http://www.smasuppo <http://www.smasupport.com/chat_list.htm> rt.com/chat_list.htm It's the second option listed. I've used it before and it worked fine for me and the small group I was chatting with. > > is there a way to create one for our group? > > i think it'll be a sucess if had 1 because find sma chat room anywhere. > > Reply to this message people who are in favour of this concept. > > Olly > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 You can either schedule a specific time for people to meet in the SMA Support chat room, or you can hang out in there until someone else shows up, just like you would on AIM or Messenger. It's the only way I can think of right now for everyone to talk at the same time. > > > > is there a way to create one for our group? > > > > i think it'll be a sucess if had 1 because find sma chat room > anywhere. > > > > Reply to this message people who are in favour of this concept. > > > > Olly > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 > Whoooa, how did I not know she turned 13? Good lord. I've been reading a lot > about behavior/development and I learned age 3 is like a glimpse into the > teenage years. Can I just say I want to resign from my current position? =P Oh, I think age 13 is *way* worse than three! The joys of motherhood. Jenn Quote Link to comment Share on other sites More sharing options...
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