United Brachial Plexus Network, Inc.

Hi! My name is Chris, I'm 24 yrs old, and have OBPI. I've been pretty ignorant about my condition my whole life. That is to say, it's always been struggle to do the simplest tasks, but I didn't know I had an actual disorder until I was about 13 yrs old, and didn't really know much about the details until just recently. I just started reading all these wonderful forums and support groups, and It's been great. I don't really feel beaten by life anymore because of my Erb's Palsy, however, I was surprised to realize how comforting it is to read all these stories and learn about other people going through the same struggle. I've never met anyone else with Erb's Palsy.

My big question arose the other day, when I read that Erb's Palsy can get worse as you age. That kind of scares me, because I need both of my arms to make my living, and it's already hard enough as it is! Has anyone experienced this? Does anyone have advice on things I can do so slow or prevent further decline? I started to exercise my arm and force myself to use it as often as I can when was about 13 I think, and have regained far more use with it than I thought was possible as a child. It'd also be great to talk to anyone who feels like venting how they feel! I'm usually a pretty introverted person, but I feel a definite urge to open up!

cdmurfee@att.net

Hi Chris, welcome to the message board. I am 47 robpi.You are welcome to vent all you want here. We also have a private board for venting for adults. You need to contact Kathleen at kathm@ubpn.org for permission to sign on. What I have found out as I have aged is the overuse syndrome of my good arm. I guess I thought I could do any thing, and I did. I have had one surgery on it on the medial nerve. What we try to tell the younger obpi is to not overuse. You have to find that nitch where you are comfortable but not overusing it. In other words ask for help once in awhile. I know it's hard to do, but it will save you when you start to age.
If you have any questions ask away....

Hello and Welcome Chris,
Over-use and Over-Compensation of my unaffected limbs and over-doing tasks that I could've gotten help with is the cause of my LOBPI worsening... plus some spine twisting to do certain tasks I was too proud to ask help to do has caused pain, pain, pain as I've aged.

Please start taking care of your self now! Yes, I can be bossy.

Carolyn J
LOBPI/70


Message was edited by: Carolyn J

That's good to know. About a yr ago, I just started being able to make a living solely by playing and teaching the trombone, and at my age, it's tough! I want to keep playing for a living for as long as I live! Recently, I've been playing with the disneyland band as a sub. That's been sort of tough, because I have to play while moving around and holding my trombone with my affected arm, with the additional weight of a flip book, and at times, a somewhat restrictive costume. Some days that doesn't bother me, but some days it does. And days like today, I get to play "Let's Go Fly a kite" on the carousel, and I actually get paid to do that! But, it was a bit tricky trying to get off the carousel horse while not falling and not dropping my horn. Sometimes, with various dance bands I play with, I have to use a plunger in my left hand and coordinate that with what I'm doing with the right hand. I've had to sort of reinvent my own way to make that possible. My profession is basically the most important thing in my life right now, and it's sort of scary to think of unforeseen road blocks.

On a slightly unrelated tangent, I see thousands of people in the park every time I go to work @ d-land, and I wonder how many of them have Erb's palsy as well. I just have a side thought that it'd be cool if there were a way to show kids with Erb's Palsy that you can grow up and have a fun job and not let the disability get in the way of what you love to do.

With my warmest regards, Chris OBPI

Chris,
Let's see you at CAMP 2010, OK? bring that trombone too!

Carolyn J
LOBPI/70

I'll definitely do my best to be there, and with my horn! Incidentally enough, when I was in college, I had to take 3 semesters of class piano (that was painful!), however, I did a lot better on my final exam than most of the other people in the class, who had full use of both of their arms and hands. How about that for a lesson in tenacity? Just don't ask me to play piano now, as it's been about 3 since I touched a piano with any serious thought.

But seriously, it'd be great to meet anyone else who knows what it's like to deal with OBPI

hello my name is sabrina. i have OBPI since birth.i am now 25. just found out what is really was just this year from internet research. i was told it was some sort of nerve damage but didn't know what kind or anything. my mom doesn't like to discuss it with me because she feels responsible. anyways i am a merchandiser for an ice cream company and all i do all day is stock ice cream. this is very physical and my good arm takes the brunt of the work. i have been experiencing pains and tightness in my good arm from overuse and was wondering if there are any remedies for this that any one else knows of besides "taking it easy" as this is not an option for me at the moment. any info helps....thank you

Chris ..welcome to the boards!! It would be great if you could make it to one of the camps. It is truly an amazing experience.

I was a trumpet player in high school. I loved to play it and yes, I always played it a bit crooked. But I didn't care at all.

The best thing you can do is try not to over do it. I was always so stubborn in saying oh I'll get it. (Sometimes I still do) And did a lot of lifting etc. Now I'm 37 and am a bit more cautious. It really does make a difference. Just be cautious.

Now we have a trombone player and a trumpeteer...we'll have a whole band before we know it!! *L*
Take care
Rachel

Got a Bassoon player too

Chris -

What a neat story, I did band all through high school and college, and always thought how neat it would have been to play trombone, I am impressed that you have stuck with it even through the pain. It was through playing so much that I even realized my arm was different and that it was in pain. I wanted to be a band director, but decided not to do to only being able to conduct with one arm, sometimes I wish and still think about going back to school and going for it, but then I remember how much more pain that might cause down the road.

I am reading through all of this and definitely am taking into account the advice from people to take it easy on those good arms, I can already feel the strain I put on it and do not want it to get any worse.

It is so nice to know we are not alone here, just in this posting a handfull of young 20 year olds all in the same situation.

good luck

Andrea
24 - ROBPI

That is neat! I've been thinking about taking up the piano again for the theory and also therapy application of using my left hand for more intricate functions. If you really want to be a band director, you shouldn't let OBPI stop you! In my conducting class in college, I was one of the two best conductors in the class, and have done lots of conducting for various teaching gigs. I never had the desire to be a band director though. I did consider getting a masters in conducting at one point for the score study aspect, but then I changed my mind.

Question: how the heck do you play bassoon with BPI? Doesn't that have like 9 thumb buttons and crazy half hole fingerings? I can barely play video games with my left thumb the way it is. If I don't practice just using the trigger on a few of my trombone on a regular basis, I lose the coordination! And that's just a lever that is on or off.