United Brachial Plexus Network, Inc.

Dear UBPN FAMILY ,ALL
....I'm so sad because everyone seemed to stop posting on issues of living with these LIFETIME of Careinjuries BECAUSE of all the spaming going on. Fortunately our monitors are excellent at cleaning it all up BUT that doesn't help my missing being in touch with you wonderful parents and fellow adults with OBPI/TBI.
I really do miss you all.

HUGS,
Carolyn J

I am with you, Carolyn - I can't believe some people have nothing better to do with their time! Camille B.

I thought people weren't posting because they weren't getting any worthwhile answers.

It is intersting to see perspectives. What is worthwhile to one may not be to another. I am guessing that you fall into the latter catagory. I on the other hand have found great value over the last nine years and try and contribute as I can. There are those that do and those that do not, and those who are just disruptive. Its the disruptive we could do without.

A community is what people invest into it. Thankfully we have enough positive people to keep this community worth being a part of.



-rich

And I was thinking the other day ....I wonder if it is because UBPN was down for so long. I tried daily to get on....and was so happy when it was back up....but I was wondering if people just thought the sight was down PERMANENTLY !!!! I agree though CAROLYN.....you are a GREAT PERSON...just had to say that !!! GAYLE

For me it is many reasons......mostly because I have realized How "Public" this site really is.

I can understand why being in a public forum could cause concern. I have never had any issues with it though. My email has been available since I signed in to UBPN, and frequently it has been a good thing to be contacted off-line to help localparents and answer questions.

I would be interested to hear your perception of the public forum and how you feel it could be improved.

richard.ubpn@gmail.com

Here's what I see happening:
Look back over the past few days of posts.
Which ones get the most responses?
Chickenpox.
Pre-teen blues.
Go Tigers
The lady asking about triangle tilt got 0 or maybe a smattering of answers.
Perhaps these people are getting answers privately, through email, but if that's the case, why bother to post?
Just pick someone and email them...
See what I mean? It seems the focus is kind of "off" -
I'm not saying there's anything inherently wrong with non bpi posts, it's just that the simple support questions are sometimes...ignored.

I am sorry about the problems lately (which I do not see)and I've not been very active on here lately either because life is going good with my oldest with an injury and the off-line emails. I thought I'd reply with a funny for those of you wanting more BPI humor/discussions or whatever.....
Last week Britt, 14 with a left arm injury, was getting ready for school. This kid has a 45 lb+ back pack with all of her school work, her cross country duffle packed with Gatorade, water, food, her clarinet and music and her lunch and then a lunch for her to eat before her after school training. She then goes to marching band /cross country depending on the day - and has to pack up that outfit too before she leaves in the morning. I watch her stagger out that door morning after morning and when I offer help she says she's fine "boys will carry it for me at school". My husband takes her every morning but bus day came (Thursday) and she had as usual so much stuff - made it to the bus stop across the street - bus pulls up and she did not get on - and as I watched her came back home she said that she forgot her clarinet and she didn't want to get on the bus... I look at her and see her carrying it - she didn't realize that her injured arm was holding it the entire time. She came back home, needed me to drive her to school and then she says, "This Damn BPI injury! - it kind of mades me laugh Mom!" " I didn't even realize that I was holding my Damn clarinet!" (My daughter does not cuss - but she was ticked off this morning...)She took it well and I thought about it all day thinking back when she was younger and neither one of us laughed - I guess now we cuss together!! LOL
Christy

Carolyn, Sorry you are feeling sad. I do visit the site several times daily though I do not always have something to add. Sometimes I think I say too much, lol. But, I read every new post. If I feel I have something that needs addressed or can offer some help I do post. As for being public, I don't post anything I wouldn't say in public so I am not afraid of anything on here. Knowing that it is public. I think it needs to be so that everyone can have access to the wonderful people and experiences shared. Bless you all for your help.
Sue