United Brachial Plexus Network, Inc.

Caiti
Erb's Palsy was the only name they gave my parents.
The very limited information in the library only gave a brief paragraph on Erb's Palsy.
I accidentally came across the words "Brachial Plexus" and WOW a whole world opened up for me.
No matter how people searched, just a few short years ago, they could not find information on Erb's Palsy/Brachial Plexus injury in newborns.
The information was not available.
I searched the internet and in Dec. 1999 I found UBPN and it was formed that year.
Before then I found nothing on Erb's Palsy the only name I knew.

I never say Erb's Palsy it sounds like a defect or a salad

Kath robpi/adult

I always called it Erb's Palsy too, it's what my parents were told when I was born 32 years ago. I only found out about calling BPI when I did a search for Erb's and came across UBPN.
Marieke (32, LOBPI)

Well I do agree, that saying Erb's palsy doesnt exactly sound the best. I dont think I'll say BPI though (only when typing). I'll just call it a Brachial Plexus Injury. Regardless, after so many years I havent had to explain it to anyone lately. I think the last time I was asked about my arm it was a "Why do you hold your arm that way?" and I explained the whole thing to her since it was during a college course 2 years ago.

Welcome, Caiti and Brian.

Our computer was in the shop for a few days, and after that it was a couple more days until we were back online, so now I'm catching up.

I didn't know there was any terminology for my birth injury until I was 17. When I told my mother that my injury had a name, Erb's Palsy, she exploded with anger.

"THERE'S NOTHING WRONG WITH YOUR BRAIN!!" she shouted.

I knew right then that: 1)she was thinking of Cerebral Palsy, and 2)that I'd never be able to discuss this with her. I was 51 years old when she died on July 4, 2000.

When I found UBPN in 2005, I had a profound feeling of, "I'm not alone anymore!" Additionally, I found other terminology that I could use. I use LOBPI here. When I speak to a non-BPI person, I say Brachial Plexus Injury, then I explain what the brachial plexus is. I try to keep my explanation short, because we live in a time where short attention spans seem to be the norm. If someone asks questions, I answer them the best I can.

Hope this helps.

Joanie, 58, soon to be 59, LOBPI.

Kids always used to ask Frankie when he was little what was wrong with his arm. He couldn't pronounce Brachail Plexus so he just told them the doctor tried to rip his head off when he was being born and honestly that was the truth straight forward from a 5 yr olds mouth now 14 and still saying the same thing. Mare

> Kath - You are too inspiring...you need to stop. I
> kid!
>
> I'm thankful for all the encouragement. We'll see how
> counseling helps and go from there.
>
> Brian - thankyou for the compliment. I like to
> believe I'm rather intelligent...but when you read a
> million books to avoid the public on "bad days"...you
> seem to grow a large brain! kidding
>
> I'm afraid I havent been nearly as outgoing since my
> grampa passed almost 5 years ago. Just one more thing
> I need to deal with I suppose.
>
> Amazing how one day you can feel so alone and do one
> google search and find the world in one message board.

Hey I understand how u feel about your grandpa, I lost my grammy 3 years ago and I still think about it almost every day. Mostly because my grandma on my moms side always likes my sisters more then me because they have more of a connection but my grammy on my dads side always had a connection with me.

I go up and down, I think I'm good one day then another I get pissed. Take today for example everythings fine until I go to shovel the driveway and side walk(we got a big storm last night and this morning), 2 minutes in and I feel the difference I am almost doing it all with one arm and my right arm starts feeling strained with taking all the load, but I truck though it getting more angry with the more my right arm gets strained and thinking about how easy this would be without my injury. I come in right arm aching throw my jacket and stuff, this is my problem it makes me more angry then sad I just get so damn frusturated.

WELCOME,Brian to our UBPN Family!
I have no clue why I'm sooo sloow in welcoming you...must have taken a senior sababbatical..LOL...anyhow, I am glad you found us. Please, please start saving your "good" arm!
Yes it sucks, sometimes when we have to let things we need to do, go but if we want to keep our good arm/limbs working for us through our future, we must take the "let- it-go" route! Take it from me, it is worse later if you don't.

Off my soap box.

((((HUGS))))
Carolyn J
LOBPI/69


Message was edited by: Carolyn J

Carolyn dont be so hard on yourself!

Brian...shoveling is EVIL! Its the reason I pay 75 extra dollars per month for underground parking in the apartment I live. I feel for ya on that...used to have to deal with it all the time. Especially living in a wintery state like WI.

Well my appointment is this Thurs at 3pm to talk to the counselor and start working out my emotional issues and the trauma ive been dealing within my mind for 23 years.

Caiti, good luck with the appt! I hope that you really get some where with this treatment.
Hugs,
Amy 20 years old ROBPI from MN

Caiti
I am so happy you are seeking some help with the emotional side of this injury.

Please remember to bring some information with you on bpi. Not all doctors truly understand the physical challenges that come along with it. It might help your doctor to understand more of the issues you face.

If you would like a copy of Outreach our publication please send your name & address to Nancy@ubpn.org

Kath robpi/adult


Message was edited by: Kath