United Brachial Plexus Network, Inc.

I think its time to move this up with so many new people coming to the board
Bumping this up...

Kath

Hello All,

I am totally new to message boards, so forgive me if I make a mistake.

I am the mother of two, a 15 month old, and a two month old- Jordan. Jordan was injured during delivery and now has Erb's Palsey. We have just really begun this journey of struggle. I have a million questions- can people really get better? He always had use of his hand, but at first could not move any portion of his arm at all. Since about age two days, he has begun to move his arm, lift his arm (almost over his head) and most recently bend his elbow. Although I am sort of excited, ther is still a marked difference between his "good arm" and the injured one.The doctor says that he has the mildest form, but this was diagnosed w/o an EMG, and he has not recommended ot or pt.

I am so worried about my beautiful baby boy... I just want to make sure that I am doing everything that I can for my son!

What can you guys recommend for me? We live in the Washington DC area and there doesn't seem to be any support groups here. I have been walking through a dense fog for the past 68 days.

What frustrates me most is that my son would have been absolutely fine if my doctor had given me the option of having a cesearan! Everytime I think about how much he has suffered becuase of her decision, I am incensed!

I am trying my best to focus on his recovery. We visit a pediatric neuroligst for the first time on Wednesday (Dr. Crawford at Johns Hopkins Univ, Baltimore, MD.) Any suggestions? What kinds of questions should I ask?

Hi my name is Kerrin I was born in 1980 with erbs palsy in my right arm and shoulder. As I grew up I began playing piano, drums etc. My right arm actually looks like its broken but it isnt. Certain muscle did not develop right due to the damaged nerves. I am lucky be cause I can use my hand and arm pretty well. I get pains every now and again, and sometimes my hand locks up. I have played guitar and bass for almost 11 years, it took a lot of work and I can play. One thing I hate is people telling me I can not do something. Tons of people told me I'd never be a guitar player, well I proved all wrong. It actually took me 5 years to build my strumming patterns which I do on my injured side. Two life lessons I know and live is one never ever give up, and two anything is possible.

Hello!

My name is Anthony I am 23 and have a lobpi.I don't know all the technical jargon of my bpi but I know I can't touch my head,lift my arm in a curl,or flex,I can't lift weight with hand and can't put my palm up(like for change).Im sure all of you know exactly what I am talking about..lol. I do envy alot of you that have seen doctors or have meds or that have had surgery,I unfortunatly do not. I have been told all my life "there is no problem", "its all in my head" and "if you tried hard enough you will have a normal arm like every one else".(im sure that would be hard to determine without medical expertise). I was made to lift weights I couldn't lift and do exercises I couldn't do. When your 7 of 7 children and the other six can do things, your automatically supposed to be able to because birth injuries are only in your head..lol. I went to a family doctor at seven and he told my mother there was nothing really wrong and that I am good looking and healthy otherwise(what a crock).
So I took it all on and feel I am the master of adaptation! Now my poor right has suffered and my left is worse (shooting pain during weather and random other times),that can almost put me in a left fetal poition for hours till some Ibruprofen kicks in (thats all I take,(or have) and works sometimes).Now I am taking new courses of action me and my girlfriend are trying to take this head on. When I had my job I had insurance and started out seeing an orthopedic spec he put a name on it ...cool. Second, went to a orthopedic surgeon he just wanted to start cutting things...not cool.Third, went to a neurologist on my own because I looked up BPI and knew it was a nerve problem, and he gave me all the tests gave me some answers but he said he did not know enough said I should go to the Mayo Clinic....told my job that working in the cold was hurting my arm and that I am doing further damage to myself so they said ok and moved me to the freezer instead of the cooler. Apparently I knew I was not going to win the battle at work when my manager told me "I was using my disability as an exuse not to due my job"..things went down hill from there I got fired haven't really worked since. I have been trying to find a job that wouldn't require me to do manual labor at least not a lot, no luck ....followed by more depression lots of breakdowns and lots of feeling alone. Because I felt I had always tried to do my best and why is this pushing me so down...finally i found this website..realized I am not totally alone in this and am hoping to make new friends..I think I will. Im not saying everything is fine ...Its just better ! I know this is a very serious letter but hell you have to start with the beginning to see the end. I just wanted everyone to understand my background just as much as I want to understand yours. Further more I have no support from my huge family I feel half are in denial and half tell me I am a hypochondriac making all this up for sympathy(wow thats rough ain't it) but what do they know ..slowly but surely I'll rise!

Don't think Im very down all the time. Im not! I love making people laugh and putting them on I live for it.I have wanted and probably will always want to be some kind of entertainer ...But thats another goal and another story.. Anway I am Lucid_707@hotmail.com
and I would love to hear from each and every one of you. I will do the same

Thanks Bunches
Anthony Licari (poster)

Dear Kate
Being new on this forum, I learned at a very young age how to handle a bra strap(on a female) and still feel a master at the trade.
I am a male 48 yer old LOBP(Rupture) and like most pigheaded males and females with our challenge I have lead a pyhsically active life. Bra straps were one of the first sports mastered as a teen.
Being a bit serious now, could you please let me know when the boat run is. Up here in the great white north we look forward to sitting back, warm weather, cold beer, bra staps and good cheer.
As Tiger woud say
TTFN (Ta Ta for now)
BANDIT

Well, we come very late to the party....
Has the cruise ship left without us? Thought I would be the first to take the roll call into the next year.

Our four year old son has erbs palsy - right arm. Delivered by a resident doctor as our obgyn observed... Not at all what we expected. Is our son the only baby delivered at 36 weeks gestation to have erbs???

His older brother was larger and had no birth injuries. Our son did not need forcepts or anything of that nature. Needless to say we had our third child by c-section. One nightmare we where not prepared to re-live.

Still our son is beautiful, and determined, and we love him and spoil him rotten.

Hi! My name is Teresa and I have a 3 month old baby with a Rbpi. My daughter, Mackenzie, is in therapy once a week and has seen a neurologist a couple of times. He had her fit just last week for a DOC band because of her plagiocephaly from her torticollis. I'm so thankful for this website and support group because I would know nothing about this injury without it.

Moving up to the top for newcomers...

I doin' this 'cause I need to know what the heck the 20/20 show was all about.
NAME: Steve Loudermilk
AGE: 36
D.O.B.: 2/27/66
O.B.P.I.: Left Arm
I've never really had to many problems with my injury 'cause my Dad never let me say "I can't".
Football, Baseball, Basketball, Weightlifting, etc., I've never had any problems doin' what I set my mind to.
I just felt a little out of place 'til I found this site.
I need to know whats up with the 20/20 program, what did I miss?
I know this is an old post but I think I really missed something.

Steve

20/20 Show was presented by Barbara Walters - on it they showed a video in the delivery room - it showed how we were injured... boy did that hit me like a ton of bricks....

As a result many new people found ubpn because of the ABC message boards after the show...

And like you I was never allowed to say "I can't" even when I couldn’t.... LOL...

I think that is why when I can't really do something I get so determined and keep trying.... If you want to see a real temper flare up it is when I really can't make it... yikes!!!! Talk about a melt down.... only tennis beat me... and now opening jars...LOL.. but I got a tool that will do it for me... my family think I am thick headed... won't let them help... that comes from years of training... but the cost is high...
Overuse - osteoarthritis... weak "unaffected" arm...
But I am still independent... LOL...

The 20/20 show was so hard to see... makes you really understand and also understand how our parent must have felt... not that they showed us...

Glad to see your still here... thought I was alone for a while... LOL... So are you coming to camp and bringing the family to meet us all?

Kath