United Brachial Plexus Network

I guess nobody's ever too old to be a newbee at something. Found these boards by chance. I had no idea there was such a community.

So, let me qualify myself...
I'm Charlie, with OBPI to my right arm. I guess my story is pretty typical. I was a 10 lb baby, a month past my due date, the doc chose not to do a c-section and used the hotdog tongs instead. At the time (1962), they just called it a 'nerve bundle injury' and told my folks there was little chance my arm would ever move or feel anything. My arm was turned in the 'waiter's tip' position (I still have the christening photos). I'm told the docs tried pinprick tests on the arm but I showed no response.

One day, after a few months, my mom noticed a slight movement in my right pinky. She called dad into the room to be sure she wasn't hallucinating. She wasn't. (My mom used to tel this part with a lot more drama, before she got Alzheimers.)

Mom learned about some gentle stretching and rotation exercises she could do with my arm, which she did daily until I was about 5 or 6. The arm showed steady improvement, especially in feeling and in hand function.

My folks took me to PT at Einstein Medical in Philly. For awhile I had to wear a rigid wrist brace in hopes of correcting the 'lazy' wrist. That didn't work. And later, at New York Hospital, they did some kind of electric stimulation testing on the nerves...I guess I was about 13. Hurt like hell too. The consensus was that the arm had improved as much as it ever would.

Seems they were right. I still have severely limited mobility of the shoulder, a permanently bent elbow and 'lazy' wrist. The arm is a bit shorter than my left, which confounds tailors every few years when I have to get fitted for a suit. Good news is that I have no pain or numbness and have full hand function. I can drive a car, pick up my baby girl, change a diaper, carry books, even play the guitar a bit.

I've never met anyone else with this condition. Ever. I figured it was a one-in-a-billion accident. And this week is the first that I've heard the term "Erb's palsy".

Surgical correction, beyond purely cosmetic straightening of the arm at the expense of function, was never offered. At my age, I feel I've probably missed any chance at that. But I am eager to hear about the experiences of other adults living with OBPI.

Thanks for reading.

Welcome Charlie

Yes, your story is very typical of most adult obpi's.

I have a robpi and was treated out of New York Hospital but many years before you. Most of my therapy was done at home but started at two weeks of age. I always knew I had Erb's Palsy but could find no information on it until two weeks after I turned 60.

I know how anxious you are to meet another person with obpi and you must be full of questions. I know I was and at the time I found UBPN only three other obpi were around and we did not have this board just for obpi/adults.

Feel free to ask any questions and remember there are no dumb questions when it comes to obpi.

Welcome to Club OBPI.

Kath robpi/adult

Welcome to the club Charlie. I am one year older than you and am robpi. Like Kath said ask away with questions . Isn't it nice to know that you are not alone. It was amazing to me when I found this board 9 years ago.
Judy

WELCOME, Charlie. There is no such thing as a dumb question anywhere on any of the message boards, we all love to share too.

I didn't find this wonderful network of people, information and support and a name, Erb's palsy until I was 66. What a healing began for me then.

Please post often. We learn from one another.
I wish I knew you when I lived in Philly,1969-'79!!!

Carolyn J
LOBPI/70


Message was edited by: Carolyn J

Welcome, Charlie.

If you can come to our next camp, which I understand is now going to be in 2010, you will meet many people with arms like yours. I remember how I felt when I first came to these boards, when I met my first other OBPI person (Nancy), and when I first went to Camp UBPN and saw so many others with arms like mine. It's wonderful to know that you are not alone anymore.

Joanie

As they've said there truly isn't a dumb question, and I would have to say most of us remember the excitement of finding this community.

I think one of the best part to me how much I had in common with everyone. The way we try to cover it up, or how we put out hair up. Whatever it may be. Even the feeling of being one in a billion, we can relate to.

I describe everyone I've met as my BP family. And as Joanie said, if you can get to camp that is THE BEST experience. For a weekend everyone gets everyone.

Welcome to the boards Charlie.

-Traci

Charlie,

Welcome to the boards. It is an exciting place to be and many great people who try to answer all of your questions for you.

Camp is so much fun and a great experience for anyone who has not been before.

Rachel

Welcome Charlie...

As you may have guessed you have found a WONDERFUL PLACE with a wealth of information and services and contacts and beyond that one of the most AWESOME GROUPS of MEN & WOMEN I think you'll ever find.

I also thought I was the only one (most of us did) until I came here in approx. 99. I will be 52 soon and am BiOBPI. YEPPERS.....I am lucky enough to have both arms buggered up. MORE lucky though is that like you, I have pretty good function in one and good enough in the other with a slight waiters tip as well.

"One in a billion", I'm sorry to say....NO....we're not. I was a preemie at just 4 lbs. So you see it happens in many ways and circumstances. I've also never had any surgery, but I did fly to Texas to see Dr. Nath. While I was there I learned of the secondary issues of living with a BPI. I have had a wonderful life, and never felt too badly about my arms.

Again, welcome and ask anything you'd like. We're all open books. Tina BiOBPI

Thank you, everyone, for the warm welcome. What a great community you have here. I'm sure I'll get to know many of you and your stories.

My whole life I've had two options: explain the arm or hide it. And when I explain it, I'm never sure if I'm really being understood. Until now.

Thanks again. I'm sure I'll have lots of questions as I travel thru these message boards.
-Charlie

Welcome Charlie!
I am LOBPI, I too was a preemie like Tina, at 2 lbs 5 ounces.

I went to the last Camp (Fall 2007) and got to meet people with a BPI for the first time and really loved it!

Hope that you can come to the next one in 2010!

Marieke 32, LOBPI