United Brachial Plexus Network, Inc.

Christy
Please don't look at the future as bleak... When I found the message boards almost five years ago I was in terrible pain in both arms and was scared to death that I was loosing my unaffected arm. Because I read all the material on obpi and educated my self I began to demand better medical care. I was examined by a bpi specialist and then found a good physicial therapist who worked on me and help relieve the pain and returned some of my range of motion...
You are so young I am sure there are things that will help you.
Kath

Hi everyone,

I'm new here and the mother of an 8 week old daugher with ROBPI. She is the most precious little girl and I just love her to death.

I'm learning so much about this injury and am so glad to have found this website. Today is the first day I've read in this forum as I wanted to get a firsthand look at life with a BPI from your perspective. My emotions range from one gamut to another... somedays I feel sad and want to cry for poor Ashleigh for having to go through this, and other days I'm very optimistic and feel that everything will be A-Ok. Luckily, my husband and I both have degrees as PT Assistants so we started doing ROM on day one with our daughter. Neither of us had heard of BPI before, and didn't work with pediatrics (much) so we are going to be starting PT and OT next week.

I'm so glad to know that the adults/teens out there are doing well with their BPI and living life to the fullest. You all bring me hope

Hello All,

My name is Joe, i'm 28 yrs. old from NJ, I have a LOBPI i have Erbs palsy as a result. I have an elbow contracture, very limited range of motion of my shoulder and cannot supinate my wrist. I can not reach over my head, I can not put my hand in my back pocket and had a hard time buttoning my pants when i was a kid. I find myself carrying things around in my hand without realizing it, i use my turn signals with my right hand throught the hole in the steering wheel. Over the years i have adapted ways to do things that my affected arm would limit me from doing. I fell in love with the guitar at age ten and was determined to learn the instrument despite the disability, I continue to play and have become quite fluent these days. I also enjoy mountainbiking and home improvement projects. I have had surgery twice on my wrist and thumb and am looking into surgery currently with Dr. Nath (TCH). Anyone wishing to discuss anything feel free to e-mail me arc76@snip.net

Don't get discouraged, it sounds like Ashleigh is off to a good start. ROM is so very important at this stage. I remember how hard it was then, but in some ways it was easier then,than it is now. My Kayla is 11years old and realizes it's hard work to maintain. She regained about 75% usage, she is also robp. She is awkward in many daily activities, currently receiving OT & PT, we're trying to keep her from further injury. Kayla's vision was affectted by the birth trauma, that is one thing I wished someone would have addressed for us, she was 5 and was being registered for school and couldn't pass the eye exam. She had had double vision since birth, we never knew we assumed that difficulties with her motor skills we're "arm related" but the muscles in the right side of her face were weakened as well. So do ask lots and lots of questions. Leave no stone unturned. I would like to correspond if you'd like, I've been where you are now, and remember all the emotions. MY e-mail is Sherbrlee@yahoo.com

Hello all

Yes you may call me a stranger! but i have reasons why i havent talked here for so long but ill post a seperate message for that.

Anyway

Im Michelle, im from scotland and im 18 with ROBPI.
I dont actually think it has effected me in my life much. i had no intervention until 16 when i found out there was help out there and other ppl and i discovered ubpn but now im not gettin treatment bcos docs here cant help me! so i lead a normal life with normal kids.

my arm sticks out at the elbow i have great hand movement i play the piano!

michelle x

Hi!
I'm Catarina, 35, from Lisbon, Portugal. I'm the mother of Sebastiao, 7 months, ROBPI.
Sebastiao had a nerve transfer in May and is slowly progressing. I never come here, only to the general board.
Good luck to you all.

My name is Ginne, I am 35 and live in Ontario, Canada. My beautiful little girl Melissa, is LOBPI. She had damage to C5&C6 (neuroma), C7 was ripped from the spine, and C8 & T1 were torn just outside the spine. When she was 3 months old she had a nerve graft done at Toronto's Hospital for sick children and doing extremely well.

She is 17 months old now and is able to lift her arm to a 90 degree angle in front of her, bends her elbow, and is starting to use her wrist and fingers (she will flex them when asked).

I have discovered that there is nothing that will stop this child. In fact, I would say that she is a charming little bugger. She waves to strangers and blows them kisses!!!

She is bound and determined and I cannot wait to see what she gets into next as she has no fear.

I do believe that she will suprise us all and I am gratified to see that there are other adults that have had this same injury and have not let it get in their way!!!!!

You are all a great role model for us parents to use.

Thank you all so much!!!

Ginne

Just as an odd post note. My siste-in-law is a right TBPI. At the time of her injury she was a Police constable and had pulled over a motorist, when he took off with her arm in the window. She was dragged for a kilometer or so before she could get her arm out.

C5 was the nerve affected I do believe. However this injury has not really slowed her down. She does backwater conoeing, camps, hikes and is still a very active Police Officer (she is now a Sargeant)

She too has noticed that weather can cause some issues with her arm and was the one to point out to my husband and I to keep Melissa's ROBPI arm covered more than the other when the weather turns cold. She wsa also the one who mentioned that Melissa's sleeplessness during humid weather and high pressiure systems were "more than likely related to her.." BPI.

Ginne

Ginne
Welcome to the Message Boards
Your Melissa sounds so cute. Your right nothing can hold us back. She sounds like she is a happy little girl.
You are lucky that your sister in law gave you the information about Melissa's arm being cold.
I still put something extra on my right arm when it is cold and when I sleep because it gets so cold it wakes me up at night.
Kathleen

Hello, I'm the mom of a 13 yr old son John. My name is Jhana, hence we are BOTH J's. I NEVER knew about ANY information to help my son. I was told, ehh, there was nothing they could do. His injury is to his right shoulder, arm,hand. I actually am not even sure the EXACT extent what to call it other than the shoulder dystocia/ erb's palsy. Until two years ago, I was not pc literate, and did not know so many others were out there like John. To me, he is perfect and I notice no imperfection. John asked me, "Mom, I wish I could get this arm fixed" so I began to search, and here we are. Now we began understanding more as we read and research. thank you.