Jesmcd2 got me thinking about this site/forum/chat room/online support group. If you have ever benefited in any way from this site, I'd love to hear how you were helped or what you like best about it (or what you wish were different). Have you benefited from MSAA via this site or in another way?
I'll gladly go first and say that MSAA offers many top-notch publications. I gleaned a great deal of very helpful information from them, and still go there to search for answers.
All of you folks are and were such a godsend, especially in the first year following my diagnosis. It helped me to know that some of my symptoms were "normal," that others overcame an obstacle and how they did it. I felt very alone immediately after my diagnosis because no one of my acquaintance could understand what I was experiencing, but since found all of you, I have never felt alone.
Getting feedback from those who understand is so important. Most of you can understand how important your comments are in response to a post. So whether you're a "veteran" of MS or a newbie, you are vital to this group because we continue to learn from one another and support one another.
I thank all who participate as often as they can.
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greaterexp
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greaterexp great to have you as a new CommunityAmbassador. I know you will do very well. Remember though, you wouldn't please everyone, just has to be their loss.
Thank you for responding so sweetly and with good advice. I don't worry about trying to please everyone anymore, but I try hard to understand others' viewpoints and be respectful of them. I love seeing that kind of respect here daily.
One beauty of this site is how it brings people from all walks of life, ages, experiences, etc., together. As Fancy1959 always points out, "Together, we are stronger." We all try to help one another, and it works beautifully! Each member is so important.
I am doing much better thank u. And yes i did use their library. I got MS for dummies when i was first diagnosed. I havent gotten any other books since then. I am gonna check to see if they have audibles tho cuz my eyes dont let me read as much any more these days
I knew of MSAA from years ago when I was first diagnosed. I also have a cooling vest and chair which I still use to this day. I found this chat site by accident I think and is the only one I check everyday. The most important thing I have is I am not alone with this disease, as Fancy1959 says “together we are stronger” and she is so right! 😀❤️
greaterexp I cant write enough but will try.Experience,Knowledge,compassion,hope,physical wellness ideas and motivation,laughter,art etc to uplift the soul, natural ideas for health,friendship, brotherhood sisterhood, extra prayers of wellbeing and happy thoughts, acceptance* all over the world communication of such things, being able to give back being a piece of the puzzle....joy of family shared, mental wellness sharing is caring, the meaning of health in locked......
greaterexp I think jackiesj has just about said it all. I know when I was rushed into hospital on my birthday last year, you were the first people I asked for support, and I got it. With this forum, you never have to feel alone, it is a true blessing, and sometimes , what a laugh 😂
This has been a.great place to get new info, new ways to do things, and to appreciate each and every day. The only thing that I'd like to see changed is another button like the "like" button. When someone is telling you something sad or unpleasant, we all hit the like button as if we like what they are going thru. Maybe we could have something else to show that we care, but don't necessarily like what is happening.
greaterexp . Being I don’t get to talk a lot about ms at home this site has been a god send to me. When I mention anything ms related at home I’m told I’m obsessed with ms. Which I guess like so many of us I am. When every step I take I stagger or bounce of the walls or fall I think of ms. Or to fatigued to do anything except go to the bathroom I think of ms. And so many more things make me think of ms. But I can come here and complain cry vent or laugh sometimes because you all are non judgemental because you also live with this monster called ms. So if I’m obsessed or just passionate about the life we live you all understand and support me in good times and in bad.
Yesterday was a good example. I spent the whole day at the hospital getting MRIs finally and had so many of you supporting and praying for me it was awesome. To have so many that cared was a blessing beyond words.
April will be my 1 year MS diagnosis anniversary and this site and MSAA info has helped me understand so much more about this disease than drs anywhere ever could. Hearing and discussing symptoms and what to expect for others going they them has been great.
As usual I have to write a book to say what I feel but all that to say thanks to all of you for being there for me.
Doubled51 Your words strike home. There is no place, other than this site, where I can share any of my struggles or fears, no one who would hear that I fell yesterday, or struggled to read when optic neuritis flared up. My family accused me of negativity, friends leap to tell me about their worse problems or offer advice on what I should do. These responses have silenced me. Here, on this site, I have a voice and am listened to.
Sounds familiar. I fell back in November and didn’t tell anybody til I found out it was broken in late December when I went for a wellness check. Then I was just told I had no business in the garage to begin with. MS was never mentioned just that I was clumsy.
No problem with friends because I only have 1 and he’s 50 miles away so most of our contact is by phone. But he is a great friend. He’s my hot rod friend. We’ve been build cars together for 30 years or more so when I get to see him it’s a blessing.
But other than him this sites my only ms friends. Like I said my wife says I’m obsessed so other than test or dr appts it’s not mentioned. Sad but true.
I fell last Saturday night and the next morning I mentioned it and was just told yeah I thought I heard you fall. So I just don’t mention it.
Thank god we have this safe place to come to.
Here we are never alone. That you can believe and trust in.
Thanks Erin. I’ll make it. As the old saying goes I’m a tough old bird. The greatest thing my wife and I share is our faith. That’s more important and the greatest support network that can be found. We were both preachers kids.😇😇.
We just got a lot going on in our lives right now. Homeschooling an 8 year old is a challenge at any time.🤪😜 But as long as Gods in the midst of the works all will be well.
She is mainly. I’m the housekeeper when they’re schooling.😋😋. Which I greatly prefer. My patience isn’t nearly as good as hers. I still want old school tactics like paddling butts😋 but these days you can’t discipline like we were raised. And it shows in kids today.
greaterexp jesmcd2 Although I rarely comment, I start every day by visiting this site. As you have expressed, the site keeps me connected in ways I couldn't have anticipated. Here on line, I have found a community of people who express courage, optimism, and empathy for everyone. When someone writes to share experience, suffering, pain, questions, others immediately begin to share their accumulated wisdom, giving a cyber space embrace. Without this site, I would feel very, very alone.
It's such an encouragement to know that there are others traveling at the same speed as I am. I so often feel that the world keeps moving, and I am dragging along behind. After missing out on too many things, friends go on without you.
I also enjoy the informational links that are posted. It's impossible to keep up with the advancements and other goings on in the Ms world.
Doubled51 voiced it so well...what he said! This site is the first I check every morning - it sorta grounds me for the day. I feel like this is the only place I can go where I am truly understood. My family tries to, and is so supportive of my needs, but I think unless you walk - stumble - in our shoes, you really won't have a full understanding.
The responses bring tears to my eyes. I knew this place was very important to me, but it’s amazing how much we truly depend on and care for one another. That doesn’t happen easily with the internet.
I hope to continue to read more responses about the importance of this group.
It’s the people here that make the biggest difference in my life. I won’t repeat what many others here have so eloquently stated, but I cherish how we listen, share, encourage and genuinely care for one another. The MSAA has blessed me with a treasure trove of true friends.
And greaterexp , it’s so great to see you as a CA! We all appreciate the work you, Jesmcd2 , Fancy1959 and CalfeeChick do. Thank you! 💕
WAshingtongirl , there is no way I could fill your shoes! You’ve always been a voice of reason and empathy, and you’ve encouraged me so sweetly when I’ve felt down. Thank you for how you share your limited energy with us, when I know your plate is already full.
What first drew me to MSAA & HU was my quest for information about MS. Then I joined this Chat forum. All of you have answered my questions, been supportive of me and have become my support system.. My MS support System!!! My MS Family. Thank you Ms. WAshingtongirl You have guided me and supported in this journey. I find I must make my response short, tired tonight and my pillow awaits..
Where would we be without each other? Thanks, greaterexp and CalfeeChick . All of us here do as we can, when we can. So blessed to have friends like you. 😘
I was so happy to find this site. My husband tries to understand but he doesn't. He always says if you would do this or that, if you would have exercised more you would be able to walk . Also it great to see that not everyone has the same problems but some are almost the same as mine. The Dr can't understand why I don't have vision problems like everyone else. But here I see others that don't so I don't feel abnormal. I am grateful for everyone's help and encouragement.
Greaterexp, it's Fancy1959. I swear this notebook ate another response of mine. I could have sworn I answered this post of yours 2 days ago but when I was picking through different post to see what was up tonight I couldn't find my response to you.
About 2 years ago I was feeling down and out because I could no longer work. As my disability grew my mood grew blacker. I saw myself as a disabled, worthless, person who was no longer productive. Besides my MS I had other serious health issues arise and I simply fell apart.
Then I stumbled upon this site. It did not take me long to figure out that by helping others, with each and every reply or post I made, I helped myself. Within weeks I had made a new identity for myself. My soul started to fly as I realized the good I did by simply talking with others. Then wonders upon wonders happened. The Administration behind the MSAA contacted me and asked me to be a Community Ambassador on the site. So Jes and I started on this Grand Adventure and the rest is history.
It’s easy to minimize our efforts in all areas of life or define ourselves by what we do or by our physical abilities.
I realized how much I looked forward to and appreciated every response to any question I asked here. Everyone’s comments and answers were so very important to me, especially right after the diagnosis, but still are now. It would be hard for me to express how relieved I would feel after reading each response.
Even those who add only a “like” to a post offer encouragement by doing so.
Can we ever have too much support or encouragement? We really do strengthen one another by being here together.
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New to this site - Hello everyone!
Unnumbered post We are here to support each other 5 Jan 20 20 2
MSAA Online Focus Group - Day 6
