United Brachial Plexus Network, Inc.

Hey, does anyone know of any good BPI websites with good information on adult OBPI injuries, I can find info on children obstetrically injured and adults trauma injured but not very much more than a few paragraphs on adults obstetrically injured, even UBPN's awareness information isn't much on this topic. Thanks.
Carrie

Hi Carrie-when we were working on awareness I searched the net high and low for this kind of info for literally days, I even got a multilingual mate to search European sites and got nothing at all except as you say info on obpi in infants, and that mostly geared towards treatment rather than living with if you see what I mean, and none at all on adult bpi other than Ryan's site and NABD, with one little bit on Yahoo about tbpi in which you are advised to amputate after one year.....yea right! The fact is there is virtually nothing on adults with long term bpi whether trauma or obpi but we are working to address that. So, if you find anything relevant on ANY form of adult bpi please pass it on ! This stuff is needed and although as I said we are working to achieve that goal the more input from the more sources the better!

Hi Carrie

I know just what you mean... We are slow at getting our information together... first we had to learn what was wrong with us....

I have been working with Nancy on FaQ strictly from the point of view of OBPI... with all the many issues we face even though I found this web page 2 years ago I am still learning... so hopeful we will get some things together... We also need information to put in awareness. There are so many things... over use.. extent of our personal injuries... how compensation effects us-- what would be proper OT to start early on to prevent some of the many injuries caused by Cumulative Stress to the arms, hands, neck... It seem that most OBPI begin to have problems in our twenties because we are long term by the age of 25. I think with proper medical attention some of trauma due to compensation can be prevented later on....
We also need to make the medical community aware of the fact that while we have bpi we for the most part have been deprived of proper evaluation. (that is obpi have) obpi need proper evaluation and information on the extent of our own personal injuries... That requires us to become detectives and persistent. Since most doctors feel because we are long term some how we have this information... Which most of us do not...
I have serched the web for more then 5 years and have not come up with a better site then ubpn... So it is up to us to gather our information - compare notes and then move forward with Awareness material that pertains to the issues of obpi...
There are numerous issues connected with growing up disabled and also most adults/obpi say our injuries were never spoken about nor fully explained...
we just moved on and did what we had to do and compensated... this has caused physicial damage to some obpi hands and unaffected arms.
We really need to do our own long term study and gather our own information.


Also when more obpi post questions it helps... For example someone posted that they held objects in their hand for long periods of time and never noticed... All of the adult obpi posting then responded that we all do it and thought it was memory laps or bad habits... but it was due to bpi...It is because of the disconnect when we were babies we forget we have a hand...
We spoke about the fact that we do not get needles or blood pressure taken in our affected arms... because of the immaturity of our arms when they are injured we are not really mapped the same as we should be... one neurologist explained that because I was injured so young my veins were smaller and not in there proper places.... so to take a blood test they may blow a vein this would cause more atrophy in the muscle that vein nourished...
See what I mean by posting questions and responses we all learn... I have found most doctors are not familiar with obpi nor have they ever treated anyone with it until I walk in the door... coming from NY that seems impossible but true... with such a large population there has to be more out there like us and trying to do research on this matter...
Of course they are looking under Erb's Palsy... which I no longer call it... it sounds like a birth defect instead of what it really is a birth injury....
off the soap box and to bed
Kath

DAM, Kath.............your good !!!

Of course, that is a great answer for Carrie's question. Not much more I can say except........................................................................stay tuned Carrie.

Hey Tina

I don't want you to become a woman of a few words.......!!!!!!!!!!!!!!!!!!!!!

Got any questions.....?
Or should we start on sibling relationships!!!!!!!!

Or how about the fact that we are viewed as hiding it well....grrrrrrrrr ..... ok so its only an arm (we all like that on).... I think my the line I like best is--
"Oh my goodness you can hardly notice" ...of course I don't answer.... but what I want to say is " Ya wanna bet!! I notice..... LOL...." both of these statements were said to me by Doctors when I mentioned I had "Erb's Palsy"....for years it was almost the standard response...but they never check or touched the arm. Now I realized they did not check my arm - because they had little to no information on obpi and not because they did not care -- but if I bring my car to a gas station with a door that does not work...they at least check it out....LOL...LOL...

I think we have to start getting more proactive and bring awareness information with us to any new doctor... or specialist... most do not have any information on "erb's palsy" and non refer to it as obpi..!!!

Now Tina what say you to the above...? woman of a few words... !!! And is my morning joke here yet!!

And where are all the other obpi with questions?

Thanks Carrie! good start to some good questions?

Kath