United Brachial Plexus Network, Inc.

Well this is what seems to be the case with this site,
It seems to me that TRAUMA newbys find this site & hang around for a while then disapear,maybe its a little too slow for some too keep intrested?
Anyway i had this idea of maybe having a page where it is much like a search engine....what you would do is enter your post/zip code in & then in order of proximaty a list would come up of peoples names & e-mail addys in your area,also a v breif disscription of injury & treatments received.
then it would be up to the guys to email each other

I would have found somthing like this v usefull,its also a shame that people with such great advice and imput should be lost!
I know for a fact that within a 50 mile radius of me that there are at least 6 tbpi's most of whome had motorbike accidents,
wouldnt it be brilliant to have some kind of way of talking to someone in your own city/town even who knows what your going thro & can point you in the right direction?
tell ya i'll be glad to get back to work ,talk about board out of ya head!

karl

Your idea is great but it needs to go along with more information. I think part of the problem is that there is no real information on this site for tbpi injuries. What is here is great but it focuses on the injury immediately after the accident.
For myself I am starting to have other things happening and no way to know if this is good or bad. Most people with a TBPI are told it is so rare that they think they are all alone in this. I think if things were expanded in the resources to include long term information(i.e. how long does the pain last, depression, etc.) it would help a great deal.
I also agree though that it would be nice to connect with someone else with this injury. I think it might help to reduce the feeling of being all alone in this.

people do come & go, much more so than they used to. It's not just the trauma injured peeps, the other message boards too have a few 'regulars' who do most of the posting and newbies who briefly appear then float off again, the 2 adult boards seem this way especially. The problem I've always had with completely abandoning these message boards (despite invitations from various sources to do so!) is that there seem to be many 'lurkers', ie peeps who read the messages and never post-I get emails from peeps who have never posted here & never will, I know from speaking to other long termers that they do too. It's 'life with a bpi' that these peeps want to hear about, and things like you say Mindy, 'when does the pain stop?' as well as 'Will the opposite sex get turned off by my bpi?' (the answer to that one is NO! ask Karl.....:0)) 'How will I manage as a parent?' 'What kind of work can I do?' If we all just buggered off without anything new to replace this communication method, who would those peeps turn to?

When I first logged onto this site the adult message board was almost dead, there were a couple of regulars and of course the longest UBPN adult poster of all, Mikeyb-if he hadn't been there I'd have just cruised on out again, the site seemed to be about babies. I came back a couple of times, was able to support some newbies who were going thru the pain/misery/what's going to happen to me bit-it was a good feeling. If I'd had just one person in the same position as me to talk to when I was a newbie, not a doctor, (what do they know about actually living with a bpi-to them we are just an arm, something to be 'fixed' (or not)I needed an adult with a total bpi, I'd have adjusted to it so much more quickly and saved myself a lot of grief and heartache. I sound chirpy enuf these days, but I too went thru the agonising pain, the fading hope, weeping copiously in front of movies where people did stuff I thought I'd never do-holding a baby, riding a horse, wearing a sleeveless top....I felt ready to just give up at times-we've probably all been there. And we all get thru it. I love the laughs we sometimes have here because I've regarded my bpi as very funny a lot of the time (when I'm not cursing it and the stupid prat who did it to me) but the real reason I come back is to help newbies, that is the most important function of this message board to me. I want peeps to know that even if you have a totally paralysed arm it is NOT the end of the world, the pain will become managable, there is no need to set your sights on what you want from life lower and you WILL get thru the awful early time. Your arm might even get better! I've been surfing a lot to find info re overuse syndrome and I found a site about bpi injuries which said something like 'An unrecovered untreated bpi will have a seriously debilitating effect on the life of the sufferer' statements like that make me SO ANGRY-it was undoubtedly written by someone who does not have a bpi (but thinks they are an 'expert')and obviously no knowledge whatever of long term life with a bpi. What about those whose surgery has not worked, or who just did not get recovery, where is the hope for them? If I'd read that statement when I was newly injured it would have devastated me. Yes, there are problems, HUGE adjustments to be made, the long term stuff is very scary but I take each day as it comes and I still feel lucky to be alive rather than miserable because I can't carry 3 shopping bags at once without spending a week in bed afterwards. Or type a message as long as this without getting cramp in my 'good' arm! Check out sites on rheumatism, carpal tunnel syndrome, all that stuff...most peeps get those things without a bpi, kids walk past my house every day carrying school bags that I know from my research are going to cripple them by the time they are 50, that's life, noone said it was going to be a walk in the park. But 'debilitating?' That's just not true, not for most of the long term peeps I talk to. I know I'm not speaking for everyone, but to make a generalised statement like that is ridiculous and very discouraging.

Haha strayed off the point a bit there, I think what I'm trying to say is I come here to help, if I can give just one person some hope-not necessarily of recovery of the arm but of recovery of the whole person, for the ability to live life as just yourself, irrespective of the arm, I think it's worth it. OK, off soapbox, time for brekkies :0)ps Mindy we are being VERY proactive in getting more tbpi relevant info, I have no doubt that Lizzy is as I write trapping prominent surgeons with her leather studded sling at a bpi symposium in Paris and forcing info out of them-it WILL HAPPEN.

Hello Karlos, it's your scottish tbpi here, your right what you say' but i'll tell you one thing, i won't be going anywhere in a hurry. Since i found this site it has been a great help to me knowing that i was'nt the only one with this terrible injury. i just wish i'de found it at the beginning of my accident, (feb99) but i did'nt have access to a puter then. The same goes for me, people should stay around a lot longer, if there are going to be any developments in this field surely this will be the place to read about it. But most of all it's great to here everyone el'ses story, so if there is anbody else reading this,STAY WITH US well that's all for now. it will be interesting to here how liz gets on in Paris.

bye for now & take care all you bpi's


bigsel

I'm not going anywhere either. I know I am new here, but the info I get is invaluable. I love to come here because we can laugh at ourselves when we try to do something with our TBPI and it doesn't work, but heaven forbid if anyone else makes fun of us. It is only for those who understand!! I have many other questions, so don't go anywhere. I would love to meet another TBPI.

Kathy

Well folks, i agree with much written on this post, the possible end of arm use is not the end of useful life etc. i can tell you UBPN are actively wanting relevant adult BPI information and queries, what DO you guys want to see on this site? Please respond to this if you have anything on your mind, ideas can't do any harm right?
we all know it's a pretty bleak state of affairs for new-injured folks trying to find info but more important contact with others who have been there done that, it won't get fixed in 5 minutes but keep on keeping on! In the future we might be able to say 'ay, in my day it were a PROPER injury not like these spoilt lot have it now' ;O)

Hi All,
Your comments are open, honest, and straight from the heart. This is such a good discussion. I so agree...People do come and go. It happens on all of our Boards.

In fact, it happens within local support groups as well. I know this from having started the first local support group in the USA in San Diego, California, over 7 years ago. There are just a core of us still around. But, we're still here to help the new people because we all felt alone when this first happened to us, tbpi or obpi, doesn't matter. We all felt alone. We don't want anyone else to feel alone, so we continue to hang around. We feel that as long as we're here, people can determine when they feel they want to move on, and when they feel they need to hang around. Either way, it's okay with us. We too hope more hang around, but we can't control that too much! We just try to hold events that will encourage people to come around from time to time. They usually do.

UBPN is working hard to deliver what its community expects. This isn't easy, because we all have other full-time lives, including jobs that pay us versus this job, which is full-time volunteering. (Although we do get "paid" by feeling good that we're helping others, but there are no financial rewards.) UBPN time takes up hobby time, family time, and any other excess time we might have to do other things in our lives. With that said, just know that we're working hard to make this organization meet the needs of our community.

We're pleased to have created the tbpi message board, having separated the adult message board into two separate boards, so that those who are like injured and like minded could more readily communicate and relate to each other. The motivation for this idea came from some of you. We're still open to additional feedback on how this is working out.

Sometime early this year, we will be launching an International BPI Registry, which will give us the opportunity to help identify who is injured (obpi and tbpi) worldwide. Also, within this year, there will be an opportunity for the Within Reach Program (UBPN's Support Group Program) to assist people in finding each other around the globe, and then establishing support groups, if they so wish. Presently, we are doing this but wish to broaden the scope of the program to include many other things. You'll be hearing more about this in the near future. We plan to have people on the Within Reach Committee from within the USA and outside of the USA. In addition, we plan to have obpi and tbpi leadership. If you're interested in getting involved, please let us know. It will be easier with more of us involved to get the job done.

Please keep emailing and telling us what type of support/services YOU want to have available for the TBPI Community. This is a GREAT time to speak up, because we're holding an executive meeting in a few weeks to continue our planning and implementation and we want to hear from you. I will be pleased to give you feedback from the meeting in February, if you so wish.

Thanks so much!
Sincerely,
Cathy N. Kanter, President
UBPN, Inc.

Karl mate...

I'm on to it! the tricky bit is getting peeps to be willing to do this...you know I've been running a survey on the internet for a while now, and several who have submitted it have indicated that, although they are quite happy to pass on any information or help via a third party (i.e. anonymously) they are NOT willing to have any details about themselves put into a fully searchable database OR meet up with other tbpi's.
The website that I'm trying to get together will have a section that is a kind of 'Grand Central' where peeps who are living close by to each other can get in contact and arrange to meet up/go for a beer etc...apart from this place and the other board I've set up, there is no other point of contact yet for adults with a bpi. I intend to put that right as soon as I can...I have already made loads of contacts from this weekend; it WILL happen; it's happening NOW....and be warned, as a founder member of the Raspberries-R-Us group, I will be askin' you to help out in this...Ha! you'll be glad to get back t'werk alright..!!! hheehehehheeee!! ;0)

Liz-getting ready to crack the whip-B ~(:-D

Thanks for posting your request for ideas on here Cathy, it came through at last! It's good to know you guys (UBPN) are trying hard to be more inclusive I'll watch replies with interest.

Just felt I had to write,
The main reason I don't hang about is because sometimes I don't feel terribly welcome.
I've tried asking questions and rarely get a reply. I know it's not me who is the sufferer, it's my hubbie, but he hates typing so usually asks me to find stuff out for him.
Maybe I'm just being paranoid, I dunno.
Anyway, my computer was down for quite a while and couldn't get online.
Has anyone here had tendon transfers... wrist ones flexor to extensor?? Rob is due to have it done in 3 weeks and is a bit anxious.
Heather