United Brachial Plexus Network, Inc.

i agree the fighting and slamming in awareness were counterproductive, but your memory seems selective-when i first logged onto Awareness the fighting was already in full swing, i almost walked out before we even started. the adult team hadn't had any input at that point. that was what i meant by the atmosphere. we entered what seemed already a highly aggressive situation. to clarify further, there were no problems whatever between individuals in the adult team, however they received their injuries. yes, gathering pertinent info is a hard grind, please don't make the assumption that noone is doing anything, on the contrary, many caring people are doing a lot to help adults with bpi, including parents from this site who often provide info they come across.
the document that appears in the awareness materials for adults with bpi survived the editorial process virtually unchanged, i have no problem with that at all and understand the need for editorial input. jenny nz

I am rather upset regarding what appears to me to be arguing over which type of injury is the worst or causes the most pain for everyone. I am a new TBPI (1 year). I have searched and searched for info about BPI. I was thrilled when I found this site because I truly felt there were people here who felt the same way I do. I come here often (everyday in fact) and find such comfort in seeing the new posts and knowing that I am not crazy when I have these physical and emotional feelings. I agree it is up to all of us to submit and share any information we find, but sometimes we don't know what we need until we find it out from others. It will not be a comfort to me to come here and see bickering and accusations. Since I am new here, is there a medical person (doctor, nurse, etc. who is here to give us information)?

Kathy

Bridget, I know you mentioned that bpi are trying to get Federal help. I was wondering what I could do in my state to help. I personally know a few congressman, and was wondering what to ask for help in.
Please let me know.
Debbie

Hi Debbie,

I would like to begin forming the Government Relations Committee for UBPN soon. If you would be interested in working on this committee please email me your phone number (sharon@ubpn.org) so that I can hear your ideas.

Thanks and I look forward to working with you,
Sharon

OK i admit i was not in the best of humour the last i was at these boards, but this is an interesting thread!
i reckon adding an extra board (and merging the teen board) was a good idea and probably inevitable, like the general and adult boards came about. As Bridget mentioned it was the suddenness that caught a few by surprise. i have to answer your comment francine about "everyone pointing fingers and complaining" - thats not a positive OR realistic appraisal of people trying to bring about positive change by being HEARD, ok? We are not sitting round asking UBPN for anything except a little board space to put relevant TBPI info available where injured people can easily access it - if UBPN is SERIOUS in wanting to be inclusive of all BPI then why would that create a problem? We have asked for soooo long for a simple design change to UBPN homepage so injured adults can go to relevant info before they decide its not the place for them and drift off - the boards were changed, did that happen? no.
And as for the suggestion we just go elsewhere if we dont like it at UBPN, is that saying UBPN are serious about TBPI? I know that was a comment from francine not Bridget, what is UBPN's stance on that please? we have been thinking and discussing long and hard how to 'do our own thing' and Liz is working hard on a website. But still new-injured folks coming here i feel deserve a chance to get at the info SO badly needed. When half the med population is ignorant of BPI what chance do new-injured folks have of arming themselves with knowledge if not from places like here?
I also am working on a relevant website but dont have the time money or expertise to make anything like UBPN, just a personal 'how i got thru it' page with links and hopefully relevant info - we're not sat round complaining, we're trying to promote positive CHANGE and thats sometimes not an easy process.

A new year round the corner, a time to look forward not back, and a happy new year to ALL even those who think im a mouthy &&**""!!** ;O)

well of course I have to share my wealth of opinions with yall too
Id like to say that I think EVERYone has very valid and pertinent information here and that I have seen efforts on UBPNs behalf to incorporate everyones input- I can say that from personal experience.
I can also say that I have heard alot of anguish from MANY of the awareness committe members about how that went...but...my heart goes out to everyone involved with that-
Several people have stated here about how difficult it is to get medical help- I think its much easier to get medical help for children(my area of experience) than for adults without insurance(or even with)here in the states,
What I want to address gently, is that there are alot of personalities here, mine included,- thats what mekes UBPN and the world go round-
We have to learn to make it together...and we can...
If we recognize the stronger personalities and not get personally offended, and yet at the same time stand up and lovingly disagree,assertively, I know even I get "in your face" strong sometimes, and upset people, but when I am able to exchange with someone on respectful basis, it mellows me and sometimes a mediuum is hit, or sometimes I recogbnize I am wrong, or...)sometimes,lol) I am right...or sometimes...we just disagree...AND when ever I can I try and be the one to maintain respect and keep my eye on the intention-
It IS painful when people are judgemental of each other rather than the specific topics involved-
I think ,getting back to the original topic, that the seperate board might serve well- BUT I think the ONLY people who can judge that are the adults who use it -
I hope UBPN will continue to hear from them and be able to evolve accordingly- they are important if this is to be a BPI board- Maybe it seems like someone won or lost, like having seperate boards is a degradation, but I doubt that is how it was meant to be-
I have seen and known personally a couple trauma BPI and know it is very devastating- this is not a best/worst thing, it doesnt go like that, it is a thing where there are some differences and some similarities...ALL of which we can all learn from...some people need to be better or worse...who knows why, thats just the way they see their world- like linear, front back, higher lower, but maybe we could look at it more sphereically, like it goes around and around, last might be first and so forth-
oh- I am just going on and on-
I hope noone leaves and that we can all help UBPN continue to evolve! I truly care about everyone here and have made some very wonderful close and personal friends-
yall hang in there, keep the feedback flowing and surround it with loving intentions.

I've been trying to find out why the boards changed.....guess now I've got an answer......sort of. What's been bugging me about the change is who decided on OBPI and TBPI?

So someone with OBPI had their injury caused at birth? How did this occur? Was it by any chance a TRAUMA type of injury?

Ok, so then people with TBPI must be totally different then. Oh yeah, BPI injury caused by trauma, in pretty much the same type of way.

Well, how about instead of General Board, that's replaced with 'Parents of OBPI' and 'Parents of TBPI'. Since most posters on that board are parents.

Look I'm not having a go, and I'm definitely not belittling anyones injury, but I think a lot of valid points have been put on here. There isn't much in the way of info for TBPI's. We're no more or less BPI sufferers than anyone else, just seeking information any way we can get it. Just saying 'if you don't like it go somewhere else', or 'send us the information and we'll post it' isn't ok. If we had the information we wouldn't need UBPN.

I thought the split was not too bad, in terms of the types of questions peeps were asking, however I did wonder whether any of the OBPI's would post on the trauma board now (or vice-versa). I'm sure we can help each other, this seems a bit like of an odd way to support though.

I think it would be a big loss to the credibility of UBPN if the Adult TBPI (as opposed to the infant/juvenile TBPI) portion did go elsewhere. How could you then justify a name like 'UNITED' Brachial Plexus Network ??

Perhaps DBPN (Divided Brachial Plexus Network) doesn't sound so bad?

Whenever I've posted on here before, it's been to the question, not the persons diagnosis, ie. if I thought it would help, not if I thought they were the same.

Anyway, how about devils advocate? If the boards are gonna stay the same, how about one for Motorcycle TBPI's, Motor Car TBPI's or Building Site TBPI's? Ok just being silly now?

omgoodness
that is funny, Im sorry but I had to point out the humour
DBPN
I belong to another .com community
actually they call themselves a dotcommune, but Ill leave you to work with that- anyways...these GREAT people split the boards up into like...I dont know, maybe 16 different boards, I HATED it ...but it seems to be working- they have moderaters(volunteer) and stuff(trust) tho and a much busier posting situation- the one thing that bugs me is that their moderaters move posts they deem inappropriate for one board over to the appropriate board...so people who want to post on the board that gets more traffic, so the post gets read, have their post moved- It works for them, because they have SOoo many posts(Im talking about the MOTHERING.com boards)but for us it seems like too much division might conquer- I mean, If certain people need to have their own private area, I guess thats kewl- but everyone seems to go and post on everyone elses board and that seems to work well and be okay too- so
some of the people happy some of the time
all of them some of the time
but never all of em happy all the time

ok, Ive made enough comments

i guess I'll put my 2 cents in. Sometimes, those of us who were born OBPI just want to whine ,talk about our childhoods, adult overuse-I know I felt like I was hogging the board with insignificant issues when under my post was a TBBI in excrucuating pain ,just had surgery, considering amputation. I love the new board because we older folks can talk without feeling like our problems don't carry the importance of the newly injured. that doesn't mean that the TBPI aren't a great bunch of people-they are-we just seem to have some different isues--a lot has to do with childhood scars-the thing is-this way if we want to post 20 replies on childhood slights, it's ok. I still read the other boards, and reply sometimes. Noone blocks anyone from other forums. I fail to see why anyone should be offended. The separate boards just allow us to focus on our separate issues. It's all BPI- it's like the arthritis boards-some have a separation between rheumatoid and osteo. Or diabetes type 1 and 2.
On another note- I want to start researching adult OBPI. A starting point would help. I've pulled all I can find from the internet. What next? Pat

Hello,

If you are still interested in researching this or any other bpi related topic I will be happy to talk with you. You can email me privately at bridget@ubpn.org and we can discuss your ideas.

Thanks much,
Bridget McGinn
UBPN