United Brachial Plexus Network, Inc.

Hello, I guess this is a question for UBPN but, i can't find any adult BPI information/documents online under UBPN 'information' - am i missing something? Can someone point me too it? I know there IS adult BPI information that UBPN has but the only articles and info i can find on the site are by TCH and relevant to OBPI only,, Ryan, anyone, where's the adult stuff please??
dave

Dave.... what about in the awareness section? remember the document YOU worked on??? LOL

THanks for the link Heather, interesting stuff - and thanks Francine for pointing out there is adult info available at UBPN in the awareness section - what troubles me is, a new TBPI (say) on finding UBPN thru a wordsearch or whatever, will NOT know to go look in awareness for adult info and maybe think this site irrelevant and drift off again? Can you see where im coming from? Can we get it so there is a little balance of info available?? Dont wanna start a war here, i know UBPN was set up by parents of OBPI and focuses mainly on that, fair play, but they're all going to grow up one day and become adults with BPI. Im not asking to be 'given' anything - just a request to make the adult BPI stuff as readily accessible as all the other stuff ? I'll mail Ryan

Dave - I gave Ryan some new graphics to put on the home page of UBPN...

two major buttons...to bring attention dirctly to the information


one is INFORMATION FOR NEW PARENTS

and the other is INFORMATION FOR ADULTS

hopefully, when Ryan gets some time on his hands, he'll be able to change over the home page graphics

-francine

Great idea Francine. There is tons of information in the Awareness section that is new and useful for OBPI as well (in addition to the adult stuff that started this thread) and direct links are a good idea.

Bridget

Will the information relate to issues faced by adult OBPI also? Sometimes I think we are a bit neglected.

Most of us do not need surgery. but we certainly could use some information on the page about adult OBPI and issues faced by adult who have lived our entire life with this injury.
Questions for the medical professionals who are charged with treating us and have been able to ignore the fact that we are bpi injured under the guise that we are functioning well. Most physicians have had no experience with adult OBPI and ignore our needs treating symptoms but not connecting them to obpi. we have great difficulties getting medical attention because our injuries are so old. I have never been to a doctor who has treated another adult obpi. Finding a PT who is familiar with obpi is another issue. Because we will not recover I sometimes think there is a lack of interest in our medical care.
Many of the obpi face the issues that we were unprepared for because of the lack of medical attention and information on "Erb's Palys". Our injuries are so old that nothing can be done anymore. We also suffer from extreme overuse and the loss of full use of our "unaffected arm". We also have injuries that are secondary to OBPI and we did not even realize that they were connected. Many of the issues we deal with relate to work and early retirement and facing the fact that we are disabled and many have had to prove it to SS because we functioned at such high levels until our arms wore out. These issues will be faced by the younger population of OBPI. Perhaps we should start to address them with the small number of adult OBPI that come to this board.
Please don't leave us out on the Adult button. Much of the adult information relates to those recently injured. If and older obpi comes to this site and see only information for babies and Tbpi it is discouraging. I know I did not think I belonged on this board when I first found the web site I felt it was only for the newly injured and my injury was not really a part of this site.
Are there some things, that can be posted on Adult information, that relate only to adult OBPI? Or will the button you speak about be simply for Tbpi information and if so please post it that way.

Perhaps a question and answer section for Adult OBPI issues would help. The adult OBPI must face emotional issues that were never dealt with when we were children. We also face the fact that we have no paper trail. Our birth records were not available nor the treatment information and the exact details of our injuries. Most of the adult OBPI had little to no information on bpi until they came to this site and then the information had to be from the parents section because we were birth injured. Not once in my life has any doctor referred to my arm as a bpi injury in fact when I go to the doctors they pretend not to notice my arm. .

While bpi injuries are bpi injuries, there are some very big differences between birth injured and Trauma injured. Yet we share many of the same problems relating to bpi injury. I am still discovering how many health issues are related to obpi. And I am not sure if it is because of overuse and since the longest tbpi on the board is 20 years I wonder if they will face overuse depending on the age of injury. I think obpi face is sooner because we have always been injured.
Kath

I agree the adult info be relevant to ALL adult BPI however injured - well they are all trauma injuries if you think about it - the adult stuff i have seen has all included both OB/TBPI adult common issues, except one document made specifically relevant to new TBPI issues. And thanks to those working to make the UBPN homesite more 'adult friendly', it's appreciated by us all, cheers!

Kathleen - I read your post and wonder what else we can do.

I'm sure you have looked at the awareness section.
If you go to the Birth Injuries button we have a number of things that would work for adults, in terms of information.

About the question and answer thing..... am I understanding it correctly that you would like something like a FAQ (Frequently Asked Questions?). If this is the case, let's all put our heads together and come up with the questions and the answers and this can certainly be added.

I am still trying to get a therapist to write a therapy page for adults. The problem like you mentioned is that there are so many other issues that people might have just from normal aging and how aging affects their OBPI's. It's a difficult task. It's really a very personal concept.

Work with me Kathleen and let's see what we can come up with ok?

-francine