I joined because after reading all the material that I could about MS, I still had a lot of questions. This site has people that will answer my questions and I also like that people have a different slant on different subjects. I also like MS Connections because it provides companionship and a person can, when they are having a bad day, rant which will make me feel better afterwards. And it is so nice that there is always people around to chat which helps with the loneliness.
I love to write and MS provides plenty of subject matter to write about. As a bonus, it is therapeutic to express your thoughts opinions, or feelings - especially in written form. Another perk is the ability to give and receive ideas about MS treatments, medications, tools, and therapies that have worked for you or others. Let's face it, MSer's learn something new every day! This is the perfect forum for life with MS.
I keep getting an email saying subscription was unsuccessful???
I was diagnosed in 2011 but had symptoms since 2010. I really don't like any form of social media. I joined msconnection a few years ago to try and get a perspective of people in a similar life path as me. It took me a few more years to finally be comfortable enough to try again. I am a private person & you never know who is on any form of social media. I've had a few articles in momentum that have encouraged me to reach out to people. The latest article was in the summer 2019 issue. I have heat intolerance so that article hit home & so I decided to try a little harder.
i don't like sharing personal info with strangers, so I'm still uneasy about this.
I hope this responce helps you with what you are looking for.
My daughter has MS and I visit this site regularly to learn how to support her better. I enjoy reading the blogs and seeing how they succeed with this insidious disease. I also want to hear what people feel when things aren't going so well...their feelings about it, what they don't want to hear other people say to them, what helps them most, and what doesn't help. I'm a nurse and I work with MS patients at times and I know that every one is different. I also know that there is a great deal of physical pain associated with it, even though not everyone in the medical profession believes that. I want to learn to be an advocate for my daughter and my patients, and hopefully be a good sounding board for them without being judgemental. This is the only site I visit and I very seldom make comments just because. I appreciate all of you who share yourselves on here. Thank you!!
I think I started with the blog here. (Which long-since stopped notifying me of new posts, but that's another issue.) I probably clicked the "Discussions" tab out of bordom and saw a thing or two that interested me. I keep checking now and again in case there's something I can contribute to.
Since this was created by the NMSS, and our precious Navigators link back often, I presume most users have looked around and understand (or seek to understand) MS through official sources. Maybe that's why, compared to many similar online spaces, here has markedly less "cure" prostelytizing. Even among DMTs, people understand there isn't one best treatment for everyone. I don't know if unscientific cure topics (e.g., defeat MS through oil pulling!) aren't allowed or if, with this self-selected group, they're just not so much a thing, but I like it. And, though I haven't seen it, I trust that either a truly dangerous suggestion (I've been told I need IV peroxide) would either be quickly shot down (by both authorities and others) or removed entirely. I like that.
What I don't like... is a vital design issue I hope you can pass along.
Frustrated into action by a spamming/flooding issue, I was looking for the rules today, *ahem*, the "Community Guidelines" and it took me f-o-r-e-v-e-r to find them. The information is nearly the last place an English speaker would look - bottom right - hidden in a pdf through the smallest text in the footer and isn't specific to the discussion space.
I've ran a discussion board before and participate(d) in many and one thing I know is that if you think the guidelines/rules are important, you need to give them a place of prominence. At the least, there should be a link in the sidebar or near the top of the main page (if not all of them). Preferably, access to the guidelines wouldn't require a plug-in and terms would come up in a search. Ideally, the information would be specific to the discussion space.
I certainly don't expect all my wishes there to be fulfilled. But I very much hope the guidelines will become something one can't miss rather than can't find. Lest there be violations (as is currently) because a well-intended user mightn't follow rules they can't find.
It's not about MS, but it is about here. Just like MSers get medical issues that aren't MS, MS discussion spaces also fall prey to unrelated troubles of discussion spaces. So I hope you can pass it on. And/or connect me to said someone(s).
I've been part of five Challenge Walk MS events and made amazing connections (as one might expect from such endeavours), but with the demise of these events after last year, it's become more challenging to continue those connections and develop new ones. The same thing happened when programs and regularly-scheduled volunteer opportunities were eliminated through our local chapter, and Society reorganization brought about so many personnel and organizational responsibilities changes that it's difficult to know where and to whom to turn in order to continue to foster actual connections with others in our MS village or tribe.
So, I'm back here again after a quite long hiatus because I don't want to lose my connection to the Society. I want to continue to believe and to feel that the actual people living with or affected by MS are the priority, as unique individuals united by a condition, rather than as a monolithic entity. I'm here because I miss the camaraderie and community and engagement I had with the Society throughout the entire year--chiefly through programs--and not just at the large fundraising events.
I'm here because connections really DO matter, and the best of those connections are life-giving, affirming the value and importance of each member involved in that connection.
My hope is that I'll be able to forge new opportunities for engagement in ways that are not hindered by the algorithms used by other social media sites, and perhaps even help shape ways in which the Society continues to evolve in service to the members served.
Why do you visit MS-related online spaces like msconnection.org?
There aren’t any local support groups here. So my social worker suggested both MSfriends and MSconnections. The thought of getting on the phone with my 3 littles being loud and rambunctious on this end didn’t appeal to me. So I decided to check this out.
What are you looking for and how do you know when you’ve found it?
I have an amazing, small group of close girlfriends who have rallied around me and insists on being there for me and refusing to let myself go into what I call “hermit mode.” While most of them are extremely understanding and compassionate as they are either in the medical field or married to doneobe who is... they don’t GET IT. And often times I feel I’m tskinf more than I’m able to give.I’m looking for a community of people who REALLY understand where I can find some valuable insight and can contribute by sharing my experience and the little bits of information I’ve picked here or there.
What is the most valuable part of the experience for you?
Having a safe to be vulnerable about our experiences and receive as well as give valid input from people who are going through similar situations.