United Brachial Plexus Network

Hi! I cannot believe I stumbled upon this site a while back. I've been soaking in all the stories I could (wow! others like me!) and thought it was time to introduce myself.

I am 32 yo with ROBPI. I have never been officially diagnosed though, but I can't deny the symptoms (can't raise arm above head, can't place arm fully behind head or behind back, can't rotate forearm to have palm face up, and can only extend arm to a little over 90 degrees). My mother never knew what injury I had and was never told. When born, my affected right arm was completely paralyzed. I had to stay extra days in the hospital for evaluation. when I finally went home, I had a home health nurse who came to help me with PT. My mom tells me it did wonders and brought life into my once little dead arm. But around 2 yo or so, the arm began showing signs that all wasn't well. I began to have difficulty straightening it and my arm was becoming stiff and mobility wasn't great. I did exercises with weights and my mother massaged my arm nightly up until I was about 9 yo, but to no avail. At that time we saw family doctors but no one knew anything. I saw more doctors, had tests done, but the years just marched on with no answers... not even a name for what I had.

I am grateful for the mobility that I do have. But I always wondered if something could be done to increase it. And now with a 2.5 yo and 4 yo, I'm beginning to feel the effects of my limitations. This site has give me hope that I might have options.

I have contacted Dr. Grossman in Miami (I have family there so it would be the easiest first step for me). He wants me to come in for a consultation. I'm a bit nervous, and excited, as this is the first time I will see someone who KNOWS what may be wrong and if anything can be done. I just want to know if I have any options.

Anyway, thanks for letting me get it all out. It's the first time I've been able to share my story and actually have a name for what I have.

Where in Florida do you live? I Live in Palm Bay.
Judy 44 ROBPI

I'm in St. Pete. Where exactly is Palm Bay?

Welcome Linda and thanks for introducing yourself.
I hope you get to meet up with Judy.
It is great to meet up with others who share our life experience with bpi injury.

Kath (adult/obpi)

I Live on the opposite coast. Near melbourne/Cocoa beach. Anthony lives near you. Anthony where are you?

you know, it never occured to me that I could meet someone nearby. I would love for the opportunity!

I know that there is camp (is that held in a different place each time?). Are there local FL chapters, support groups or the occasional gathering?

I appreciate the info. And thanks for the warm welcome.

Jems,

start one Post it here. Get all you can just do a call out to floridians however you might wanna waight till after the scare is gone. God bless you all in FLA I hope you are all safe. I love Clearwater Beach.

hey I am in Orlando Yay more people from FL....I am mostly a lurker myself...
~Whitney

We should all meet at universal island of adventures and ride the hulk. We could match up arms and each hold one up on the coaster!

Love the idea of meeting at an amusement park!

After the hurricane, a FL roll call would be good. Hopefully there are more Floridians out there.

Definitely count me in for a FL meet-up if one is organized.