Why are there so few new discussions?

Since the website changed to this new one, it seems like there are far less people on here than there was 7 years ago when I first located this site. Am I just not looking in the right places? I know my friends list is gone. Thanks

beans

1 Like

Hi Beansy, yes, I agree, I have been having same issues, really
difficult and confusing to get around ever since site update, I lost all
info, and had to start over, your not the only one to tell me this, I
donā€™t know what the answer is, itā€™s still the best AVM site Iā€™ve found,

Hi, Beansy and electrician,
Change is always difficult, and we have, indeed, seen a dip in traffic since we moved to our new platform. In case you missed the drama last year, our old host, Ning, started to fail and we realized that we were in danger of losing all data (and members) from all of our thirty communities. We had to move quickly to prevent total loss of this and our other support sites. In the last couple of months, though, weā€™re happy that activity seems to be trending up.
You posted this question, and you got a response. Why not start a discussion and see where it goes? Another thing that you can do is look over previous discussions, and post something new on them. When that happens, all of the previous participants should get notifications, and with any luck the conversation may gain momentum again.
Thanks for posting! We are looking forward to this and our other sites recovering from the switch to a new platform.
Seenie from Moderator Support

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I was given a password and it doesnā€™t work so gave up in the end but follow butterfly AVM on Facebook. On a positive note (well I hope it to be) Iā€™m having surgery on my AVM early March
Best wishes
Val

Best of luck Valerie with your surgery. Let us know how you got on. Looking forward to hearing from you. Cheers Carmel

I guess I am way too suspicious of Facebook, as I went on it 6 years ago, mostly because my son was getting married, everyone lives far apart, and I found it easy to talk with my family on Facebook. Then, after the wedding, I was done with Facebook, but they are never done with me. After 5 years of thinking I was extricated from Facebook because I did what they said to delete what
I could from Facebook; I never went back on there, but somehow they started sending me texts about new friends, etc. This just started, and I get texts everyday. I do not know how to stop the texts and I wonā€™t go to Facebook, as I donā€™t even have a password. I donā€™t want to see the past, my old house before my husband died, etc. But now, most times you go to sign up for a website, they want you to go through Facebook, Instagram, and other social media. So, I donā€™t sign up through them, and do not look at this site on Facebook. Maybe there are people there who I donā€™t see here anymore, who used to be here?

beans

Val,
My prayer are on the way to you. Good luck in March!
2 important little tidbits: ā€˜Power From WITHINā€™ and ā€˜Strength From ABOVEā€™.
All good things ARE possible!!
Lisa

Thank you! I do need strength as Iā€™m terrified to be honest. But damned if I do and damned if I donā€™t!
BW
Val

Val, we are all here for you, and your not alone, so called normal people
have no clue what we avmā€™ers deal with, You donā€™t need to be so scared,
itā€™s tough for all of us,
you take care of Val,

Valeriehassan
January 24

Thank you! I do need strength as Iā€™m terrified to be honest. But damned
if I do and damned if I donā€™t!
BW
Val


Visit Topic or reply to this email to respond.


In Reply To
BoxBarge
January 23
Val, My prayer are on the way to you. Good luck in March! 2 important
little tidbits: ā€˜Power From WITHINā€™ and ā€˜Strength From ABOVEā€™. All good
things ARE possible!! Lisa

I see fewer new posts but still a few each day now, I see them under the NEW banner at the top which highlights to me which posts are new, and then scrolling down the list on the right shows me ones that have few or no replies which are the ones that I mainly focus on trying to kick start the conversation, Change as Seenie mentioned is hard for all especially if you are already frustrated with a medical issue this makes it easier to lose your patience. But please keep looking Beans :slight_smile: , I always enjoy reading your insightful and knowledgeable responses , Thanks

Martin

Thanks Martin, as you have cheered me on many times. What is hard is change for me. Not just because I am now 66, but it has always been hard. I am at times shocked that anything changes. I forget things can get better through change. I still want phones attached to walls so I donā€™t have to find my phone all the time. I love computers and figuring out how to do things and teaching someone who is unfamiliar with computers. Yet, I donā€™t like being on this new website only because it is totally different than what I knew. Now I have to figure this one out, but itā€™s ok because I will eventually. I will also learn new things while figuring out why, when I looked at your post, there were other conversations in between the discussion I started about this new site. That totally blows my mind that other people are posting in this discussion about somebody having surgery soon. I donā€™t care that they do that, but as I read it, I get so confused. Maybe it is my vision left from the AVM. I cannot see whole screens, just about 1/2 if I look at the center of the screen. I miss the left world, unless I know what I need is over on the left. Does that make sense? So changes, such as at a grocery store, really shock me, though I know it happens. Right now, and only on this site, I am typing and the screen is split, with two images of my reply. Is it just me? Thx.
beans

Heading

66 your still a spring chicken :slight_smile: , plenty of kick in you ! heheheheh , Agree it was very hard on the mods also the change but Iā€™d glad to say that most have now finally gotten used to it, The format of the site may not be great for you as your description above is great and I understand (I think) what you mean and since the screen is split halfway it would be difficult.

Blimey, Iā€™m sorry I reported that I might be cured of my AVM on an AVM support group, albeit email at this present time
Sorry if I offended anyone
BW
Val

I never meant harm when I said what I said about conversations in the middle of things. I apologize if I was not clear. I have homonymous hemianopia, a visual field cut, from an AVM bleed and craniotomy in 1959. It is very difficult to read and get used to websites. It takes very little to confuse me. That was all I meant.

@beansy

Itā€™s OK. You werenā€™t seeing mixed up conversations. Itā€™s just that in answering your question, @electrician said www.avmsurvivors.org is the best support site heā€™s found and @Valeriehassan tried to help him by saying she found Butterfly AVM on Facebook to be helpful. Val also mentioned sheā€™s looking forward to getting sorted with surgery in March, so some people wanted to wish her well with that.

Consequently, two conversations have got a bit mixed.

I know youā€™re finding the new web site a bit difficult but youā€™ll get there. I remember my grandma, who lived with our family when I grew up, complaining when we had a new cooker in Celsius rather than Fahrenheit. ā€œIā€™ll never get the hang of it!!ā€ she said. Weā€™ll, she did get the hang of it and sheā€™d be the one to tell everyone else how to convert temperaturesā€¦ it just takes time.

Best wishes all,

Richard

I think itā€™s great that we are all in communication about our AVMs. Itā€™s 10 years since I lost my left visual field on both eyes. I still walk into things. I get around but I miss driving. I feel my independence is gone. Does anyone feel like this? All the best Valarie for March.

Regards
Carmel

Val, I have had left homonymous hemianopia for 56 years. It has never gotten better, and it has never gotten worse. But as I am getting older, now I have cataracts, but I canā€™t see anything different with them. My left eye is a wanderer, so I guess I look like the village idiot. Until someone told me it wandered to the left, I never knew. I got the muscle tightened maybe 15 years ago, but it has started wandering a little again. I never had any visual rehab or any rehab, never learned about scanning, sometimes I forget to eat the food on the left side of the plate. I walked into people and things and fell over stuff. I now hac4 a guide dog, and I do much better.ā€™

beans


Valeriehassan, can you expand a bit on your experience? When you sign up for this community, you set your own password. Iā€™m trying to understand what went wrong for you. If youā€™d rather, send us an email at ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– 
Seenie from ModSupport

This is not valeriehassan, ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā–  Electrician on site,

Hi Beansy. Yes I completely agree with you. This website is still a great resource and I try to look at it regularly. But I miss the old site. It was basic, easy to navigate and user friendly. You would recognize posts by the same person and could build up an online relationship with them. The new site seems more impersonal somehow and it is not easy to find the latest messages that have come in. Personally I therefore feel the user experience has suffered although I know the platform had to be changed and there was no choice in that.