Okay folks, I have been visiting the new page on facebook. It is an active page with plenty of newly diagnosed persons sharing their experiences and asking questions. The difference with this connection page and the facebook page is the ability to instantly dialogue as we have wanted, the ability to quickly chat and respond with each other. That feature is as good as we wanted it to be.
For me, there seems to be a lingering foreboding, I keep imagining facebook harvesting all the data to be sold to the highest bidder so they can sell it back to us for a small fortune. I hate the thought of our free sharing being sold for a price, and I hate that there is no longer going to be a safe place for persons with ms to share their life stories. It feels like another betrayal, like being in an abusive relationship.
And no matter how I think about it, that there are a lot of new people going through what we have gone through, the negative feelings dont go away, maybe I am just an old lady unaccustomed to newer technology.
Good morning, maria1 --
Please remember that using Facebook is just one option. Like I wrote in the Letter to the Community
the need for community is stronger than ever. And, we are still researching, and excited about, new ways for the MS community to continue connecting.
We'd hoped to have an announcement about a new option(s) at the time we announced the shutdown of this site but with the COVID-19 pandemic the timing got a little off track. Please know that behind the scenes we are still actively investigating other options — taking all the feedback we receive here and elsewhere into account — and hope to be able to announce something soon. We appreciate your patience.
We've added additional virtual Programs and Events to the calendar. If that is of interest, please learn more here.
Thank you Kris, oftentimes most things dont bother me, I was more than surprised by my reaction to the page, there is nothing overt that caused the reaction, just a 'gut' feeling and I usually or more often than not, trust my gut, and felt it necessary to voice my concerns here. I would rather 'look like a fool' by opening my big mouth rather than keep quiet and make a bigger mistake. No regrets.
And in this case I would rather be wrong.
I agree with you. I am not on Facebook because I just don't trust it....
This site is my only online presence. I do not see myself joining Facebook even if it's the only MS community outlet.
Hi Maria it's Bobby. I know it's been a long time since hearing from me. I want to let you know that there's also MS world as well. I belong to both actually. And as far as the instant messaging they have a chat room on their site and they don't sell your information. And there's also trivia night they have on the chat room. Maybe you'll try it out. I really hope so there's a lot of good people on there and we kinda are a way to discuss our problems without everyone on Facebook getting our information and great place to make friends. I hope to see u there! Also I'm editing now to ad my screen name on their site. I'm Bobby72 on their.
Whats the address for MS world?
Ive never heard of it but would like to check it out.
Hi Bobby, maybe I will give ms world a shot. I have been on the site on facebook and am disappointed that there are very few 'old' msers, those who have had ms for a long time. Mostly i see newly diagnosed and am sad that those who have been supported by the community are not giving back. What I do notice is how educated the community is, that is wonderful. If I go on the site I will reach out to you.
Hi Maria actually in the chat room they have I believe I'm youngest half the time. There's a lot of regulars on there daily and I actually fill like I'm too young for this at times. I hope you do check it out for sure.
Bobby, you are sounding like you are doing well, even thriving, that is great to hear. I am going quiet for as long as I can keep my big mouth shut, maybe you will hear from me in a while, take care.
Hi Maria yes thank u for your reply. I have been doing a lot better living alone and I try and not allow people in. As for trying to help this person pr that person or feeling sorry I can't and won't do it anymore. I'm to old and have to many problems to deal with everyone else's issues and I hope I don't sound insensitive but even with my issues I can care less anymore if someone has no where to sleep go to a homeless shelter! I will tell you something I've been through the wringer so many times trying to be the nice guy and it's only gotten me grief. And I haven't been on a lot lately even though I've been having ups and downs it's like spilt milk anymore I still have a lot of issues with my left side and still fall on occasion but I just get back up. And that's the best part. I hope to hear from u on their forum! And as u can tell I'm on a roller right now. But it's fine.
Oh I forgot to mention I don't know if u can directly message me on their or not but if you do that's great. I'm just doing myself though these days. Also if u want my phone number to chat leave a message on here and I give it to u. It's a government phone is all.