New Brachial Plexus Palsy Foundation Site

[Kath]

Lori
I like you was not going to get in on this post.
It has gotten off track. It is a new Message Board and private and Brenda announced it on UBPN Message Boards.

I came to UBPN 6 years ago because there was no place for adult/obpi... I thought I had a rare birth injury and this is the only place I received information and support. I also found that there were others out there who sustained a "rare" injury but from a traumatic event and we share many of the same frustrations and life experience. I learned more about my own injury from my association with parents, trauma and birth injured people. I attended siblings workshop and realize how it impacted my entire family.
The BPI world is a long road with many different avenues and many different perspective's on this injury.
This board is open to the General Public and the new message board is private. I have seen other messages boards begin and end because private boards have exactly the same problems you mentioned.

There is nothing unusual about checking both message boards and posting on both it is a good way to get more information and different views... I post on a Private Message board and many of the people who post there post here to... it is not a big deal. I also go through the Internet to those web sites that are up but not truly functioning and tell people that there are places they can post to get a response instead of letting them linger out in cyber land. That is part of my function as UBPN In Touch Chairperson.

As for people not answering your questions... I don't get in to technical surgery questions. I never had surgery and cannot answer such posts... except to wish someone well. I think many people if they don't have an answer they do not respond. It's not personal.

When I first came to UBPN there were only two other OBPI/adult and it was a strange journey for us... we did not have much in the way of information. I was not sure this was a place for me either... I am OBPI not a baby and this seemed like only parents. It took months before I felt a little comfortable and welcome. I felt out of place in the world of parents of injured children... but I soon found more and more adults just like me wandering around seeking information on our "rare" birth injury.

I checked out the "new" message board and when I looked at the form it is only for Parents so I assume Adult/obpi nor TBPI are welcome there ...
UBPN supports all bpi injured both birth and trauma and has a diverse community. Through these message board I have met people from all over the world and some in person now. I have made friends who are parents, OBPI, TBPI and parents of TBPI... We all have a common bond supporting bpi injured families. It is a family injury it does not just happen to us, it impacts our entire family...

Thanks for feeling comfortable enough to express your honest feelings. I look forward to reading about your child's progress and hope that you get all the support you need... I know how important that is... My poor Mother did not have any and boy I wish she could have seen UBPN and all the information we share here.

Kath

[CW1992]

Peggy,
I just wanted to reply to you that I agreed completely with your post! Great points!
The word "caretaker" - well it hit me wrong too - felt like I was an invalid in a nursing home or something. I personally do not want or need a "caretaker". I really have no opinion about the new site but do wonder why people would advertise here for a new site there and post as guests when they want your phone number to join and become your 'caretaker"... Sort of gives me the willies!:)
Christy

[B.V.]

Just to clarify, there was no one who "advertised" as a guest. Brenda posted the new website for those interested and Allison explained that she was involved. The word "caretaker" refers to the people that are "taking care" OF THE BOARD. (caretakers of the board) They're not taking care of YOU like your an invalid. Come on folks, let's not be petty about language. Anyone who VOLUNTEERS their time, energy and resources to moderate a message board, this one included, should be commended and applauded for all their efforts and pains they go through to deal with all they have to deal with.

[njbirk]

I have not had much time in the past couple of days to check out the new board as I was travelling to Seattle to work with Karen McClune on camp planning. But I did take a few moments to visit the new website. It is a wonderful site. Very well done!

As for the message boards, UBPN should be supportive of all groups who are seeking to bring awareness to this injury. Running a message board is a difficult, I would say, a very difficult operation and with the territory comes criticism. I know we have certainly faced a lot of criticism here and it has led to changes and revisions, but we do have what I would consider, a fairly open board. We delete posts when they step over the line and it is VERY difficult to judge what that line is.

So this new board wants to be different. That is not a problem and we should not criticize them for being different or wanting to create a new forum in a new way. They deserve our support.

Nancy Birk
UBPN President

[TNT1999]

I think it is very appropriate that someone posted about the new BPPF site here. While it contains a support board, that's not all there is to the site. There are other areas of interest. I think that there are people who are not comfortable using this type of forum and rather than just complaining by voicing there complaints here, they actually did something about it. Most people don't take action -- they just complain and do nothing. I think that is commendable for those who stepped forward.

What I do think is inappropriate though is making negative comments about the new board here. Remember what "U" BPN stands for?? We s/b "United" in our BP journeys, even if we don't post on the same message board.

As far as the comments on the BPPF site about not allowing guest posts or dark humor, I take that to be that they're just stating the rules and policies upfront. Sure there are restrictive rules and policies on that site, but at least they're letting you know upfront, as most message boards should and likely do. If the rules are too restrictive, then one does not have to sign up for that board.

I used to be part of another BP group while also being on this board. I left that group for personal reasons, but anyway it was time-consuming being on both boards. I don't know if I'll be active on the new board. Who knows, I might not even get approved b/c I'm not willing to put my personal info. on the site b/c I didn't see the little "security" lock thing on my computer on the info. page of that site. I have sent an e-mail and will hopefully hear from a caretaker.

I also wanted to mention that if anyone has any negative comments about the new site / board, the most appropriate thing to do would be to send an e-mail to contact@brachialplexuspalsyfoundation.org rather than discussing it here. Just my opinion. I would hope that on the BPPF board, they don't post messages criticizing this board and that anyone there has hopefully received a lot of help one way or another from this board / site.

Personally, I didn't like the black humor on here recently (not b/c I don't have a sense of humor, just that I don't care for that type of humor and know that while my daughter has a sense of humor and is comfortable with herself, she wouldn't appreciate that kind of humor). I also don't like some of the guest posts (although most aren't too bad and I really commend UBPN for doing such a great job moderating the guest posts). However, I don't have any plans to leave the site at this time (I have taken breaks in the past due to problems mainly due to guest posts, but again, the guest posts are much better now for the most part). I also appreciate being able to post anonymously -- not just due to lawsuits, but let's face it, some of the topics of conversation surrounding childbirth are a little sensitive or even embarrassing. :O)

I was surprised about the post stating that most of the replies are for the more frequent poster. I never really noticed that. For me, I usually post if I can add some info. / value. If most of what I would've said has already been posted, often I just go onto the next post or if I don't really have input, then I usually go on and for me a lot of it depends on how much time I have to devote to the computer at the time since, as you all see, I often write a lot.

Anyway, just sharing my thoughts.

~Tina

[admin]

Looks like a nice site. It seems clear from the information about signing up for the forum there, that the same group that always opposes certain threads or opinions on this forum, are the ones who have formed and will manage that forum. I prefer a place, like this, where I can politely express my point of view. Hopefully the new forum will provide a place for F and followers to vent and express themselves without targeting this forum.

I'm posting as a guest because I don't want to be subjected to their "attacks" which would undoubtedly be done anonymously anyway.

[katep]

To all:

Please, be very, very careful where and how you "vent" on any private board. Just because a board says it is private, doesn't mean it is stuff isn't shared outside the board. Just because a board doesn't have lawyers on it, doesn't mean what you say cannot be "used against you" in other, even more harmful ways.

I was also a member of a private board when I first became part of the BPI community. I shared some very disturbing thoughts and experiences early on in my experience. I later angered the owner of that site and some of their friends. My shared personal agony was then used repeatedly to attack me, either in email directly to me or in the sharing of my stories with people whom I didn't even know.

Please: be very careful what you share *anywhere*. The internet promotes a false feeling of intimacy and safety that just doesn't exist. These boards are a great place to meet people, but my recommendation is to make a few good friends who you meet, or at least talk to on the phone, and share the really deep stuff only with them.

My two cents,

Kate

[KathyM]

I checked out your site, and it looks very good. Just a quick word for us non US citizens though - I went to join the message board and it asked me for address and phone number. Now having read this since, I can see why, but I don't hand out my phone number to anyone online. Doesn't make me a lawyer or a doctor, just a sensible mum who wants to protect her family's privacy. It's a shame if the people who really need your support are put off using the facilities because it's too "personal" for online security. I also imagine your "caretaker" program doesn't extend to the UK and therefore giving my address and phone number is pointless. (

Never mind - I've got here and the Erb's Palsy Group in the UK. It's just a shame the new group is not more open and inviting (no matter how good the intentions are, it's going to put people off).

Thanks

Kathy

[admin]

Hey KathyM I understand your concern but why do you have to put it down? They have started a site that will help people and put the word out about the injury. All the negativety is blowing my mind. Dont we want as many sites and as much info and awareness we can get about this injury?
I think they should open it up to other countries and maybe they will in time,but for now I feel the more sites and info we can put out about BPI the better.

[admin]

I too am very uncomfortable with giving out any such personal information and I don't feel comfortable with someone calling me personally to accept me into a group. I am sure it will be a good fit for some, but everyone has their personal preferences. I greatly appreciate the opportunity to post as a guest if legal or comfort levels make me feel the need to. I also feel that UBPN does a great job and certainly try their best to sort through the posts. Some mention problems with guest posters and I am sure that has been the case at time, and maybe more so before I have been around. But in all honesty, I have seen many, many guest posts that were respectful, supportive and helpful. I respect everyones needs and differing opinions and just hope we can all be supportive of each other.