United Brachial Plexus Network, Inc.

Just found this site entirely by accident. I was born with Erb's Palsy November 26, 1953. I HAD NO IDEA THERE WERE THIS MANY PEOPLE WITH THIS TYPE OF BIRTH INJURY.

I had major surgeries C 1965 in the Toronto's Hospital for Sick Children. It took approx. 1 year and I also lost a year of schooling which in itself was another major setback for me. Dr Robert Salter headed up the surgery teams that operated on me. His work allowed me to continue life with a left arm that worked well enough to play drums and also later secure a Transport Canada IIII airline pilot's medical certificate.

The worst part of having Erb's Palsy for me was the taunting I took at elementary and high school by students who were totally unaware of my circumstances and didn't understand why I was not interested in sports or couldn't play them very well. Erb Palsy also played a very large part in another psychological infliction I have suffered all my life....it is called "Male Shyness". (See Dr. Brian Gilmartin - Love Shyness, Causes, Consequences and Treatments).

Because of Dr. Salter's work I have been able to continue with my life with hardly any set backs physically. From day to day I don't even think about the minor restrictions I still have. I also want to tell you that my hospital stays when I was twelve years old grounded me for life. Compared to many of the other inflictions and illnesses that childred in the hospital suffered from Erb's Palsy almost seemed like an inconvenience. I think of all the aspects of this condition the bullying and overall bad treatment that I got at school from classmates was the worst part of it. It may very well be that things today could be different, but I don't think so. Enemy #1 were the teachers that let it continue in school, particularily the Physical Education Teachers and Principals of those schools. I suffered greatly because of their inactions and overall ignorance of my condition.

Hello everyone from Toronto Canada.

Corey Ferguson

Welcome to the site!

Nice to see another fellow Canadian! I am in Montreal, Qc, not so very far from you.

Marieke (31, LOBPI)
http://nurse-to-be08.blogspot.com/

Thank you. I was just looking up Erb's Palsy on the computer when I ran into this site. A cousin in California was asking about it and I didn't really know that much about it other than I knew I had it. I always carried on my life like it didn't matter if I had Erb's Palsy.

Corey

I more or less did the same. I knew what it was, could explain it to others, but it never stopped me from doing anything I wanted.. nothing does apparently!

Marieke (31, LOBPI)
http://nurse-to-be08.blogspot.com/

Marieke, Would it be ignorant of me to ask how long you have had Erb's Palsy? I'm 53 years old. Dr. Salter at the Hospital for Sick Children in Toronto saved my life. My mother who just passed away two years ago never gave up on me and she literally took me to dozens's of doctors's who all said there was nothing they could do for me. I was even in a useless "Airplane Splint" for two years when I was a baby to try and correct things for me, but it was the operations and casts that Dr. Salter used that changed my life in 1965. I saw the medical file on me when I did a follow-up at twenty years old. It as approx. two feet thick.

Another famouse Canadian that had Erb's Palsy was CBC Radio/Televison Broadcaster BARBRA FRUM. Do you remember her on the old news broadcasts "THE JOURNAL" I knew Barbra very well and she was a little older than me and she was amazed to hear that there had been fixes for some of the problems associated with Erb's Palsy. Barbra herself had never had any treatments, which is too bad.

Corey

I was born breech and 3 months premature, the doc pulled, I got stuck and therefore got Erb's, so have had it all my life, 31 years now.
That's what the LOBPI stands for, you'll see either LOBPI, ROBPI, TBPI
The L and R are for left and right, the OBPI stands for Obstetric Brachial Plexus Injury, in this case Erb's. There are other names for the individual injuries depending on what nerves are damaged, but in general we use OBPI or TBPI for "T" traumatic, as in an accident other than at birth.

I know the name, but I am too "young" I think to really know recognise her, my dad would though. I'll ask him and let you know, he may know her/have met her at some point.

I had a tendon transfer at 14 yrs old at the Shriner's here in Montreal. Got me external rotation and a more naurally hanging/posture of my shoulder.

Marieke

THANK YOU! THANK YOU! For answering my question and giving me all that information. I had no idea what all those letters meant. Very valuable information indeed. To be honest without revisiting that two foot hospital file I would not really have that clear of picture of what the surgery teams at TORONTO SICK KIDS did for me. I do know they broke my "humerous" in several places, pinned it and actually did a rotation to make using the arm easier and more effective. I don't think they replaced any tendons. The body casts I had weighed more than me at the time. All I know is it worked for me! Never give my restrictions a second thought. I'm glad I found out about this site. Looking forward to learning more. Thanks again.

Corey

Hi there, we are in Calgary, My son is 15 years old and has an injured right arm. We actually have been helped greatly by a Toronto DR. as well. We work under the guidance of Dr.Pape .He hasn't had surgery but made lots of gains over the past few years using nonsurgical techniques to get better ranges and get muscles working better. It is a great feeling to know you're not alone isn't it. Richard met other people at ubpn camp a couple years ago that all had bpi and it made such a difference to him - he quit feeling like such an outsider so much, his confidence and selfacceptance grew - it was really good to see what a positive impact these new friends and people made on him as he entered his teenage years.

Welcome to the boards, Corey. I know what it feels like to say, "I'm not alone anymore. There are others with arms like mine." I was 56 years old when I found UBPN in July of 2005. I have Erb's palsy, too. I thought that I was so alone with it that it didn't occur to me to look it up online. I found UBPN because my brother's wife's sister, who knew about my arm, met Judy Thornberry, a member of UBPN's board. Judy gave UBPN's web site address to my sister-in-law's sister, who called and gave me the information.

I also suffered from the taunting of my classmates at school, and have been shy all my life. I think it was the policy back then for teachers and principals to stay out of things that were between the students, at least in northeast Ohio where I grew up. I read the posts here from parents who say that in school their child explained their brachial plexus injury to the class, and I am amazed. First of all, I never had the depth of knowledge about my injury that these children have. Second, I don't think that I would have had the courage to get up in front of the class and talk about my injury. Third, I don't think that my classmates would have listened with an open heart. Fourth, no adult back then would have tried to help me.

Well, enough of that from me. I just wanted to illustrate my point that you are not alone anymore. I know that Carolyn will chime in on this thread, too. She will tell you what I'm telling you: Keep reading and ask any questions that you have, because there is no such thing as a stupid question. Now I've stolen her thunder by saying it first , but she can say, "Amen."

Joanie, 58 years, LOBPI

Welcome to our UBPN Family, Corey!!
Yes, we all come here and are amazed. Yes, most of us adults have grown up "hard" and thought we were the only ones with this injury. I never had a name for OBPI/Erb's Palsy until 2004 at age 63 other than " birth defect" and always assumed it was pre-birth.

There is sooo much information shared on the Message Board for "Adults with Brachial Plexus Birth Injuries", however there are NO DUMB QUESTIONS anywhere on any message board. Even at my age I learn something every time I come here. We support each other... and be sure to send Nancy your mailing address to recieve OUTREACH Magazine, nancy@ubpn.org ,it has great articles.

Please check out the UBPN Family CAMP 2007 Forum, it will be Labor Day weekend in September here in WA State. FYI, when I attended the Camp in 2005(it's held every 2 years)it was a life changing experience to meet and talk to other adults. Seeing the light turned on in all the kids too, really inspired me. I am open to all questions by anyone and it really helps to share and VENT too, sometimes.....I hope you come here to share often.

Carolyn J
LOBPI,68 & Proud of it!