United Brachial Plexus Network, Inc.

jennyb here, the resident kiwi(New Zealand) tbpi...carolyn, like you i have no use of my lower arm/hand on the bpi side, and very limited biceps..and like you i can still do almost everything one handed...but how do you braid your hair with one hand? i am right bpi and right handed, is that why i can't do it? i can't even braid my 2 daughters hair...draw me some word pictures please and i might conquer another bpi challenge! If you have shooting pain for no apparent reason and pain meds won't touch it, you may have phantom limb pain, it affects people with no sensory or motor input from the hand as well as amputees....the effect on the brain of a flail lower arm is the same as an amputation- and it hurts! Here's a site for amputees about it but the tips work for us too, it also warns against using medication to stop the pain so be careful :0) http://amputee-online.com/amputee/phantom.html

Pat,

Count me IN!!! LOLLL!
-Stephanie

Pass the chocolate.... besides I got and e-mail once that said it was a veggie.... and I would never question an e-mail... that stated a fact like that....

I'm in too..... can we get some male obpi... bet their better at rowing....
Kath

Welcome! Hi - I'm Christy - one of the "mommies" that comes here regularly. My daughter Brittney just turned 10, is in the 4th grade, and has a left BPI. We now live in Kingwood,(Houston)TX. Brittney has a moderate stretch injury of C5 & C6 (as far as the Drs/ specialists can tell) and has not had any surgeries. She has great finger movement but problems with all other areas like supinating, lifting arm up, straightening arm, arm to side, hand to mouth... She can compensate to do almost anything but her injury is noticeable and her arm is now about 3" shorter than her other arm. She is such a funny, sweet, outgoing girl, gifted classes, with lots of friends, loves soccer and swimming, all that's glittery, and has so much energy (on the verge of hyper sometimes) Example: I took her to the grocery store last week and as she is skipping through the store it hit me... She is TEN... shouldn't her "skipping days" be over by now? - how long do kids usually keep skipping while they shop?? I was trying to keep up with her.... She has always been so upbeat and happy, and determined and stubborn. So funny!!Brittney has a little sister Sabrina who is 5-1/2, Kindergarten,(she skips too). Brittney and Sabrina are very close. I overheard Sabrina telling a neighbor last week why Brittney had a hard time trying to do cartwheels. Sabrina said, "Brittney tries hard but can't do one very good because her arm got broke while she was giving birth". She confused the neighbor but I was proud of her for trying to explain. Brittney has awful balance and falls so much, runs in to walls, trips while she walks. She always seems to land face down on her stomach - arms and legs spread out. It worries me! Brittney's injury does not seem to bother her. I found this site about a year ago and have made some very good friends who have helped me with my fears for Brittney and to see things more from Britt's perspective instead of mine - which is very valuable to me. Does anyone have any suggestions on the balance problems??
Thanks for listening,
Christy

Hi my name is Lisa and I just want it to be said that im so glad that 20/20 did a special on bracial plexus. My son Derek will be 3 in June. He was born with the injury. It was all so new to me to be a first time mom, my first baby and have to have this injury and have no control to prevent it. There was so much I didnt know that I do now and Im always finding out more and it really helps me to read these stories and know im not alone. I have had more than I can count days and nights that i just cry. Its so tough but im getting stronger and stronger. My son has the injury to his rt shoulder and arm. He is the most strongest willed little boy and so very happy and just a very determined little boy. He had to have a muscle release back in Sept. He has had a little improvement but not alot but it was something that my husband and i and the orthopaedic dr felt was needed. derek has therapy once a week. Derek has the most problems with no supination aswel and also reaching up above his head. he arches his back alot to over compenate for it. we are in therapy and we just keep taking day by day. The good thing is that Derek is so strong and sees kids and he tries to do exactly what they do and doesnt give up. I would say that it kills me to see him not be able to keep up with some of the kids. I think he is still so young that he doesnt understand but starting at times acting like he is knowing that there is something wrong with his arm he doesnt know exactly what but its going to be around the corner when im going to have to really explain to him everything. He has been saying lately and trying to do certain things "I cant" and he throws whatever he has down and or gets upset and cries,, i think that has been the most heart breaking feeling of lately. I always say "oh yes you can lets try it again" or "mommy will help you" I really hope there is more of these shows and new broadcasts that can educate the people out there what some of us live daily and will for the rest of our lives. I enjoy reading the inspirational comments and Id love to head and talk to anyone. its so nice to know we have a great support groups and people to talk to. Way to go 20/20.
Lisa Southern California, Son Derek 2 1/2

Pat and Stephanie........

Since both of my arms suck....how about if I be the peep at the back of the boat to yell ROW.......ROW.....ROW.........(drink).ROW...........(drink)......ROW......ROW.........(drink).................."cute guy to the left"........ROW TO THE LEFT......hahahahahahahaha

I know there's a name for the "caller", but it escapes me right now.

What do you think kids???????? Can I play toooooooooo

Hi everyone! It was great to read about your stories...I thought I'd share mine. I'm 24 (for a few more days anyway!) and was born right OBPI. I've never had any surgeries--maybe therapy when I was very young. I have no use of my right arm and can't feel anything from the shoulder down. My elbow is bent at a 90 degree angle.

When people ask why I walk w/ my arm like that, I tell them it's my "gangsta walk."

Anyway..Carolyn..I too have severe pain about 5x a year...much of that coincides when I'm sick too. It's such a paralyzing pain that I can't even move!

At age 10, I sued the doctor responsible for my injury...he was no longer allowed to practice and I got money for a swimming pool (theraputic...ha ha!!), and college.

Today I'm a Communications Specialist and Webmaster for Bostwick-Braun (we sell tools....a manly field...lots of men....yummmmmmmm). But I'm a happily taken woman!

Yeah....and how do you braid hair with one hand???? Kick-butt!!!!

Has anyone thought of sharing pictures of one another?? Just curious

Tina.... the CALLER???? sounds like the cruise director.... LOL....

Kath

I think TINA should be queen of the nile and just sit back and relax. Oh, I am Judy robpi. had one surgery an ulner nerve transposition. I am 40 and I have no sense of humor.

I'm in for the boating thing and of course the drinks and chocolate. My name is Michael a/k/a Michael. 50 years left OBPI so which side of the boat do I sit on....LOL! It's great to share in all the humor about "us". I hope it serves as an inspiration for some of the younger ones. Hey Captain Kath, where shall we row to?