United Brachial Plexus Network

We have a great resource using the UBPN site. Why don't people use it. Post your comments. We want your stories and posts. This site has helped me with many issues. Please posts your ideas and comments. Just to use the site for information is fine. However, state what is on your mind. Without your input, the site gets stale. No comment is not being proactive in understanding about BPI. We are approaching 17,000 registered users. But, only a few have something to say. I know that people have questions, frustrations, anxietys, and denial about BPI. Come on people, say something. The UBPN site is only as good as its posts. I challenge all people to place at least one post a week. Personally, I accept any and all rebutles concerning this post. It is up to You to keep the UBPN site alive. So, get involved. Your comments are valid and accepted. Keep Smiling!

Tony (ASC)
ROBPI/Erb's Palsy/Adult

I understand what you say, we all have PSD because of our injuries
We try our best to responded from our life with our Limitation
There is in fact a lack of response,
I Totally understand, I bless the responded who cares, Others say I am redundant, and I am , Because many dont review what we Have written Try or just stop trying , without a response????????????????
Oh , I understand I guess others need to ask question than remembering others effort to try to help, Sometime a response of others is needed, Maybe other that did try , just gave up trying to responded because of lack of any response, I am getting to this point to

Tom

goodluck with that. i finally gave up on coming in here. i do occasionally though.

Hi Tony,

I understand that. UBPN puts alot of effort into providing good opportunities for sharing. It really used to be the only outlet for people with this injury, but with technology and unfortunately more injuries people have found other outlets for communication. Facebook has numerous pages (including our own -search UBPN), we even have Youtube videos and twitter! There are other groups ( a great one in the UK has been along as long as us) and other small groups all working towards similar goals of awareness, support and prevention. The good thing is people are finding outlets and support. I hope that as we continue to volunteer our time and efforts at UBPN that people continue to find value. It would suck to think that all the time we put into this is for naught and is not appreciated. We provided a new chat interface and a chat room. The UBPN board are the same as everyone in the community, moms and dads and injured adults-we have just chosen to try and make things easier for those who seek support, answers, community, and hopefully answers. Thanks for your support!

rich looby
president ubpn

I would like to thank all the people that responded to my comments. Now, I feel much calmer knowing that there are many different venues for BPI information and support. Moreover, I will continue to post comments on the boards and use UBPN as my source of information, support, and community. Finally, I will continue to be proactive in educating both professional and non-professional people in the world of BPI!

Tony (ASC)
ROBPI/Adult

Do people really post on these boards less than they used to? I guess so - looking through the pages, going back a few years, it does seem that the board was more active. But I still see people posting, and I notice that each new thread still gets hundreds of views, so people are reading, lurking.


A couple of other thoughts:

This board was created in what, 2001? I see the boards were very, very active back then - probably because there a) wasn't much info on brachial plexus injuries available on the internet in general back then (articles, research, studies, forums), and b) the UBPN forums were the only game in town.

Also, I think people can & do search the forums for answers, instead of starting new threads.


Rich, is it very expensive to maintain the site? Let me know if you ever need help managing. I am an engineer and am very familiar with the web & IT world. I built my first PC at age 13 in 2001. I would be happy to help. I can help get publicity if funds are needed as well. Thanks to you, Dan A., and anyone else involved in making this happen.

Alex

Hi Tony,
Thanks for all you have been doing on the boards, starting new conversations and commenting on old ones too. I had a long response typed and ready to go, hit something on my keyboard and poof, gone. Didn't have time to redo it, just came back to comment and read Rich's post, he summed up most of what I was going to say and wanted to add my input that there is a lot of traffic on Facebook. Some of that traffic has obviously taken away from here, but I contend that it isn't a net sum game, I know it is just broadening the reach and another way to touch more people. I am aware of and active with three FB groups and will comment there when I think I can contribute.

Just so you know, I am on the board of directors with UBPN as well and have been for about three years.

The other part of what I was going to say Alex covered. People are coming here and using the site, maybe just not posting as much. I have been active since 2006, I was injured back in 1986, but found the site in 2006. But I remember it being like it is now, there are times when there are lots of new posts and comments going on and then there are times when it is really slow. A lot of that is driven by new members who have lots of questions. What doesn't change is there are always a handful of "regulars" who will reply to most new posts and offer as much help as possible, those "regulars" change over time, but they usually give very good advice. With that being said, very happy to have you as one of the "regulars" and doing your part to help the community out.

Last thing I would say that hasn't been commented on and this is more of the mental side of this injury, especially for the traumatics. There is a point in the recovery process when people need to stop focusing on their arm and need to focus on doing life. A result of that is a significantly reduced, sometimes no, visits to the site. I know many people who just can't come here and spend time thinking about their arm, they really need a break from it. They might come back once in a while to ask a question or do some research on a topic, but more likely than not, they will stop coming on here for support. I completely understand this dynamic and it is one of the reasons I contribute the way I do, I am WAY past that stage of my injury and I am here to give back in any way I can.

Alex: We are having our annual board meeting in a few weeks, the web site, publicity, funding are all subjects we address, I would be happy to discuss what you had in mind and bring those ideas to the board.

Dan

Thanks Dan and everyone. Alex the cost is not very much. It is free open source software but we do have a web guy that we use when we need to upgrade the joomla software. Way beyond my capability as we have several registration tables and such. I maintain the site pretty much, and we have a couple moderators as well for the forums, but thankfully not too many BOTS get on now through our new software.

We still are getting about 5-6 new registrations every week. Some grandparents for the injured grankid, or mom/dad or TBPI adult. So although not a ton of posting the rate of registration is unfortunately fairly steady. I think there are alot of lurkers looking for answers and yes they probably were already asked an answered. Maybe we need a new forum for just personal accomplishments, and updates. Or on a long ago board we had a tell your story. Maybe something like that.

As always we are looking for good people for the UBPN board. someone who will contribute, and be able to help impact the community and UBPN efforts. Seems like you know Dan, he would be a great liaison for you to bounce ideas off as he is co-VP of UBPN.

Any publicity that could raise awareness/prevention or funds is highly valued!


rich

I thought I would add this
Even thaw few respond back here
I still will respond to what I can
Because there really, is a lot of lurkers reading our post
The best is a response that might help a lurker to ask a question
Tom

Greetings everyone who has posted so far on this topic. We have been working hard to create a more organized format, and we have included a few new sections. Hopefully this will lead to more activity on the forums and make them more enjoyable to use.

We included sections where you can write about your experience (Share Your Story) as well as included a new section called New? Start Here! where newbies can dip their toes in the water and introduce themselves. Seasoned forumites are more than welcome to re-introduce themselves as well!

Let's get this community moving again