Introductions thanks to 20/20...lurkers welcome

[Kathleen M]

Rachel

I hope you take some before and after photos! Maybe keep a journal and share with us all the great progress you make after surgery and PT.

I am looking forward to some great news from you.
I will keep praying for great healings.

Kath

[rachelcasa]

Oh, I most certainly will. I plan to keep a full journal and photos of before and after. They may not be so pretty..*L* maybe I should get a new do for them!! I will definately keep everyone posted!!!
Thanks

[Kathleen M]

moving this up

[respeoples]

I had thoracic sympathectomy go bad in 1994 cut from

C-4 to T-5? Ended up with morphine pump!

With it I can do anything!! Without it I'm in pain

24/7 and I can't use my hands or breath!

Right diaphram paralyzed, Intercoastal pain so I have

SOB!

Robert

Medicare and blue cross pays for mind!

[Kathleen M]

Robert

Sorry to hear this I hope you are feeling better now.
Kath

[Bahar]

Hi, my name is Baharak and I am right OBPI. I just discovered this forum and started to read the introductions, not sure how many of them I can read tonight. BTW, I loved the “boat” idea:), though it might be too old for you now. I am so happy to finally hear about other people with similar problems, I had seen an OBPI infant in a clinic but never an adult. I am sure all of you know what kind of a relief it can be to know that you are not “the only one” with this problem.

I am 27 and I came to the US about 18 months ago for graduate studies. I study computer science in Los Angeles, no surprise why I chose this major! And also why I always had short hair!!! (Hope you remember “braid hair with one hand” discussion!:-)
It was a forgotten topic for me for years and last Saturday was the first time I started to surf to find the English name of my problem!!! So this is the first time I hear the English/medical terms, don’t expect much

I can only lift my arm up to 90-100 degrees and can’t straight my elbow when I’m lifting it up, the rest of the time elbow looks “ok” (gravity is a good thing, isn’t it? Whatever I do with my hand my wrist extends but I can’t flex it, again gravity helps. As it’s obvious, it is shorter and smaller than my left hand. Most of the time it has feeling but with a delay, and like many others, I have burned my hand without noticing when! I did physiotherapy all my childhood, then I had an orthopedic surgery on my arm when I was 15 (the arm bone was broken and rotated).

To tell you the truth, hearing about the arthritis in “the good hand” scared me to death! I have experienced terrible pains in my left hand. Since I was a kid I was known as a physically strong girl, as none of my [two-handed] frinds was able to do many things that I used to do with only one hand. But the pain it started with a huge programming assignment in my sophomore year in college (because of long hours of sitting behind computer) and since then, as soon as I lift a heavy thing... I was wondering if you are aware of any “good thing” to avoid arthritis.

I haven’t seen a specialist for 10 years (I thought that I’d moved on and shouldn’t ruin it again!!!!) ha ha ha but I have scheduled to see a specialist after 10 years, wish me luck!

I would love to meet with those of you who are around LA, is it possible or we should all wait for the “boat” plan?

Best,
Baharak

[Kathleen M]

Welcome Bahar

You are not alone any longer... I am sure it was a shock to find so many who share the same birth injury...

As for the boat trip we did one this year at Camp UBPN held at Lake George
http://ubpn.org/camp2003/campphotospage6.html

Nancy lobpi in the rear -- me in the center robpi --- Judy robpi in front... we managed well -- we did not go in circles and managed to go a little to close to parked boats but we MADE IT!... maybe next camp UBPN 2005 we will have more daring adult bpi and have a race.
Kath

[Kathleen M]

Time to move this to the top

Kath

[eevislucas]

high im evis im 39 i have right erbs palsy i was born in japan father stationed there my weight was 9lbs 9 3/4 my limts r cant comb hair hold a cup eat write my problem growing up my parents treated me different my brother sister they tell everybody im just faking to get attention well i was a certifed nurses aide for 10 years until my back and hips gave out it seems its my right side that gives me the most gref thank you for this site i didnt know there was so many of us in this world im in the process of waiting for my hearing for ssi i was hoping mabe that someone could help me find things i could take to show them this real oh by the i sent my sister some of these letters we havnt talk alot maybe eating crow trying to get the shoe out of mouth

[BrianD]

I guess I will now step out of lurking status and become active. The first thing I want to say is when are we going to Europe to get drunk???? I loved the idea!! Anyway, I am 23, the youngest I have read so far, and like all of you have Erb's. I have known about it all my life. I was a 10lb baby and was so active I had my umbilical choard wrapped around my neck and my arm over my head. (I was anxious to get into the world and meet all the pretty ladies!!!) Anyway, until about 2 months ago I had no idea there were this many people here to talk about this. I am not familiar with all the technical terms but I have it in my left shoulder. I am not near as limited as some of you, but there are things that I can't do. I am looking into surgery with Dr. Nath in Houston though I currently reside in Phoenix, AZ.(yes it is hot) Moved here from IN 5 years ago with some friends and never regreted it. I am now asking anyone's advise on the surgery: good, bad or indifferent. I have had a couple of replys to my post titled Surgery and I thank you for them. Anyone else with recommendations please feel free to e-mail and put Erb's paulsy in the subject box. I hope to get to know you more throughout the time to come.

Brian
p.s. I think that sense of humor is a major side effect of bpi and I am most thankful for that!!!