New to Boards
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: New to Boards
Lefty
Welcome to the message boards. I am adult/obpi/Erb's
and found these message boards almost 5 years ago. I thought I was the only one with this "rare" birth injury only to discover it is not rare and there were so many other adults out there...
We have a message board for adults with this injury. Here is a link to the OBPI adult message board.
http://ubpn.org/messageboard/forum.jsp?forum=19
Kath
Welcome to the message boards. I am adult/obpi/Erb's
and found these message boards almost 5 years ago. I thought I was the only one with this "rare" birth injury only to discover it is not rare and there were so many other adults out there...
We have a message board for adults with this injury. Here is a link to the OBPI adult message board.
http://ubpn.org/messageboard/forum.jsp?forum=19
Kath
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: New to Boards
Hi Lefty!
Welcome. We are glad you found us.
I, too, have an OBPI. I'm 50 and have had surgeries as a child as well as an adult.
UBPN has a magazine that they publish twice a year which has lots of informative articles. I'll be happy to send you out some back issues and add you to our mailing list if you want to email me (nancy@ubpn.org) your name and address.
We hope you will find these board to be a place of support and information.
Nancy Birk
UBPN President
Welcome. We are glad you found us.
I, too, have an OBPI. I'm 50 and have had surgeries as a child as well as an adult.
UBPN has a magazine that they publish twice a year which has lots of informative articles. I'll be happy to send you out some back issues and add you to our mailing list if you want to email me (nancy@ubpn.org) your name and address.
We hope you will find these board to be a place of support and information.
Nancy Birk
UBPN President
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Angela Butterfly
- Posts: 483
- Joined: Fri Jul 18, 2003 4:24 pm
Re: New to Boards
Hi Lefty
Welcome
My LOBPI daughter is 20 and doesn't get on the boards. I am only on over the summer. My daughter was also considered very severe. I have written about her loss and gains in detail in 2 posts, both on the General Message Boards. Back on page 14 or so WHAT IT IS LIKE LIVING WITH A DISABILITY IN THE FAMILY. and the more recent posts of THOSE THAT HAVE NOT HAD SURGICAL INTERVENTION.
I too wish there had been more help when my daughter was young, you are kind to realize how much your parents also struggled through your loss. For so many years I was the "mean old mom". Fortunately, my daughter learned quickly at age 19, that I wasn't so bad after all. In fact she comes for lunch every Friday.....so got to run. Best to you. Angela
Welcome
My LOBPI daughter is 20 and doesn't get on the boards. I am only on over the summer. My daughter was also considered very severe. I have written about her loss and gains in detail in 2 posts, both on the General Message Boards. Back on page 14 or so WHAT IT IS LIKE LIVING WITH A DISABILITY IN THE FAMILY. and the more recent posts of THOSE THAT HAVE NOT HAD SURGICAL INTERVENTION.
I too wish there had been more help when my daughter was young, you are kind to realize how much your parents also struggled through your loss. For so many years I was the "mean old mom". Fortunately, my daughter learned quickly at age 19, that I wasn't so bad after all. In fact she comes for lunch every Friday.....so got to run. Best to you. Angela
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tylergsmom
- Posts: 282
- Joined: Thu Jan 29, 2004 6:56 pm
- Injury Description, Date, extent, surgical intervention etc: Hi! I am Laura, the mom of Tyler, who has a ROBPI. I've been a member of this site since 1998 and owe a great deal to the wonderful people in the UBPN community who have helped us along the way get what we needed to get done for Tyler. Tyler is now 14 years old and in the 9th grade. He's a super bright kid and loves his video games. Tyler had the mod quad surgery with Dr. Shenaq shortly before he passed. That was his first and only surgery. Now that he is older he is requesting additional surgery. He'd like to be able to supinate. Our goal is for Summer 2013.
- Location: Gulf Breeze, FL
Re: New to Boards
Hi Lefty---Welcome! You came to the right place. This is an excellent place for resources & support. I've been a member of the boards for more than 5 years now, and don't know what I would have done without everyone. Best of luck!
Laura LeNoir, Mom of Tyler, Age 14, ROBPI
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: New to Boards
Hi Lefty! Welcome to UBPN. This site has been so helpful to us and the people here are great. My 11 year old son is right TBPI.
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Lefty
Re: New to Boards
I understand that dynamic. My Mom was hyper-vigilant when I was a kid. I've had to work through some of those "control" issues, but when all is said and done, it'sd nice to have someone always in your corner. Lefty
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Lefty
New to Boards
Hi. I'm 28 and have had right arm paralysis since birth. I find through research that my BPI is about as severe as it gets. I'm interested in speaking to anyone with BPI or who have kids with it. I only wish this type of support had been available when I was born. My parents would have had a much easier time. I have also has 3 surguries. 2 tendon transfers and last January I had my fingers fused. Cheers.
Last bumped by Anonymous on Sun Apr 20, 2014 5:08 pm.
