Hi my name is Brittany and I just recently found this site. I have lived with LOBPI (I guess thats how you write it?) since birth. I have never heard of it called Brachial Plexus Injury, my parents have always called it Erb's Palsy. So as you can tell Im very new to this. I have never met anybody else with this problem and actually never realized it was a disability. My parents and I have never really known anything about BPI because of the fact we have never known anyone else who is affected by and where I was born I was only the 4th documented case at the time.
I feel kind of odd doing this because Ive read a lot of other posted topics and it sounds like everybody else who has it is affected a lot more by it, so in a way I feel kind of bad coming into this.
I was very lucky, though. Both my parents worked very hard with me when I was a baby, and thanks to them I have developed almost full motion of my arm.
Anyways I am very glad to have found this site and would just like to say hi to everybody else here.
Brittany
New Member
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: New Member
Welcome Brittany!!
I am LOBPI and 68 1/2 yrs old and NEVER had a name for this injury other than "birth defect" until just before I found UBPN in April of '04 at age 65 and never met another person like us until just before Family CAMP 2005. FYI,UBPN Camp is a lifechanging experience of celebration,tears, information, support,and most of all healing of invisible emotional injuries only we adults have come to share often for the very 1st time. HUGS ARE HEALING too. The Joy of seeing BPI children's eyes light up and smile or try a sport is something I cannot fully express. You just HAVE to be there.I hope you can come to Camp 2007 Labor Day weekend here in WA.
Next OUTREACH Magazine(send nancy@ubpn.org your mailing address) will have ALL the details... but read about it on the Home page and the Camp Forum.
oh yea...there are NO DUMB questions anywhere on any message Board. For me, I have learned alot from everybody especially teens who post.
HUGS all around,:)
Carolyn J
LOBPI,68 & proud of it!
I am LOBPI and 68 1/2 yrs old and NEVER had a name for this injury other than "birth defect" until just before I found UBPN in April of '04 at age 65 and never met another person like us until just before Family CAMP 2005. FYI,UBPN Camp is a lifechanging experience of celebration,tears, information, support,and most of all healing of invisible emotional injuries only we adults have come to share often for the very 1st time. HUGS ARE HEALING too. The Joy of seeing BPI children's eyes light up and smile or try a sport is something I cannot fully express. You just HAVE to be there.I hope you can come to Camp 2007 Labor Day weekend here in WA.
Next OUTREACH Magazine(send nancy@ubpn.org your mailing address) will have ALL the details... but read about it on the Home page and the Camp Forum.
oh yea...there are NO DUMB questions anywhere on any message Board. For me, I have learned alot from everybody especially teens who post.
HUGS all around,:)
Carolyn J
LOBPI,68 & proud of it!
Carolyn J
Adult LOBPI
Adult LOBPI
Re: New Member
Hi Brittany,
Welcome to UBPN. Like you, I am LOBPI. My parents didn't call it anything. When I was 17, I learned the name Erb's Palsy. When I told my mother this name, she yelled at me, "You don't have palsy! There's nothing wrong with your brain!" It was obvious that she'd heard the term before, but had rejected it because her definition of the word "palsy" was incorrect. Because her anger was so strong, it would have been useless to try to correct her understanding of the word "palsy," so I let it go.
I have limited use of my left arm and hand, but I think that it feels the sensations of hot, cold, pain, etc. fairly normally. I'm lucky that I will feel the heat before I get burned. Some BPI people get burned without feeling the heat. I'm lucky that my arm is not normally in pain. Some BPI people have constant, or near constant, pain. This does not make me feel that I don't belong here. I do belong here, and so do you. So please don't feel bad about coming to the UBPN Message Boards.
I found UBPN in July 2005, which is when I first learned the term Brachial Plexus Injury. The following month, I met Nancy Birk. She was the first person I ever met who had an arm like mine. You didn't say how old you are, but I was 56 years old at that time. That September I went to Camp UBPN and met others who have Brachial Plexus Injuries. I hope that you will come to Camp UBPN this year. There are others who can tell you much more about the camp than I can. I will just say that it's a fantastic experience.
Again, welcome to UBPN.
Joanie, LOBPI, 58 years
Welcome to UBPN. Like you, I am LOBPI. My parents didn't call it anything. When I was 17, I learned the name Erb's Palsy. When I told my mother this name, she yelled at me, "You don't have palsy! There's nothing wrong with your brain!" It was obvious that she'd heard the term before, but had rejected it because her definition of the word "palsy" was incorrect. Because her anger was so strong, it would have been useless to try to correct her understanding of the word "palsy," so I let it go.
I have limited use of my left arm and hand, but I think that it feels the sensations of hot, cold, pain, etc. fairly normally. I'm lucky that I will feel the heat before I get burned. Some BPI people get burned without feeling the heat. I'm lucky that my arm is not normally in pain. Some BPI people have constant, or near constant, pain. This does not make me feel that I don't belong here. I do belong here, and so do you. So please don't feel bad about coming to the UBPN Message Boards.
I found UBPN in July 2005, which is when I first learned the term Brachial Plexus Injury. The following month, I met Nancy Birk. She was the first person I ever met who had an arm like mine. You didn't say how old you are, but I was 56 years old at that time. That September I went to Camp UBPN and met others who have Brachial Plexus Injuries. I hope that you will come to Camp UBPN this year. There are others who can tell you much more about the camp than I can. I will just say that it's a fantastic experience.
Again, welcome to UBPN.
Joanie, LOBPI, 58 years
Re: New Member
Hey guys,
Thanks for the replies!!! It makes me excited that I get to be a part of something like this. Im really going to try to make it to the camp, but that is right around when I start up with school again.
By the way, to answer Joanie's question, I'm 20 years old.
Glad to finally be meeting people who understand what Im going through.
Brittany
Thanks for the replies!!! It makes me excited that I get to be a part of something like this. Im really going to try to make it to the camp, but that is right around when I start up with school again.
By the way, to answer Joanie's question, I'm 20 years old.
Glad to finally be meeting people who understand what Im going through.
Brittany
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hope16_05
- Posts: 1670
- Joined: Tue Jul 01, 2003 11:33 am
- Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
- Location: Minnesota
- Contact:
Re: New Member
Welcome Brittany! Did you meet Judy at the Florida BPI picnic? Or just lucky to find the site? Feel wecome here, ask any questions that you may have, the members and people here are amazing! WE can all consider our injuries minor in their own way. One huge factor is we never tend to let the injury get the best of us and keep us from trying the things that we are interested in. So dont feel bad because you might have better range than some. I could also be considered minor in some areas but age is not being my friend, and like you I am only 20 years old. The last couple years have caused a lot of pain but with OT I am mostly pain free!
Again welcome!!! And I really hope to meet you at camp! It will be right as I am starting school again too but believe me when I tell you it is so worth it!!!
Hugs,
Amy 20 years old ROBPI
Again welcome!!! And I really hope to meet you at camp! It will be right as I am starting school again too but believe me when I tell you it is so worth it!!!
Hugs,
Amy 20 years old ROBPI
Amy 28 years old ROBPI from MN
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kissygoose
Re: New Member
Welcome. I'm glad you were able to find us. I know I looked for info when I was about your age and couldn't find it but was lucky enough that several years back I did another search and found this site. the people here are amazing. And yes you belong here. I've often thought the same way because my injury is "mild" according to the drs. But no matter what the degree is we all belong here.
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: New Member
Welcome! I am glad that you have found this site. Through it I have made many new friends. I haven't met any of them face to face (yet), but through email, message boards and msn, I have made new connections with people who deal with what I have delt with and more.
Keep posting!
Marieke (31, LOBPI)
http://nurse-to-be08.blogspot.com
Keep posting!
Marieke (31, LOBPI)
http://nurse-to-be08.blogspot.com
Re: New Member
Hey Marieke,
Thank you for welcoming me to this site. I have only been a part of it for a few days but everybody who has responded to me has made me feel sooo welcome. I am very excited about this site. I cant wait to meet other people who share my same disability and who can possibly help me understand it better. haha I didnt even know there are surgeries for this!!
anyways i see that you are a nursing student. How is that going for you? My mother recently went through the whole nuring school process and she says it was the best decision she ever made in her entire life. I just want to give you some encouraging words to stick with it if you ever get disheartened because just from seeing my mother in her profession I know that it is worth the hard work.
So good luck with that! and thank you for responding to me.
Brittany
Thank you for welcoming me to this site. I have only been a part of it for a few days but everybody who has responded to me has made me feel sooo welcome. I am very excited about this site. I cant wait to meet other people who share my same disability and who can possibly help me understand it better. haha I didnt even know there are surgeries for this!!
anyways i see that you are a nursing student. How is that going for you? My mother recently went through the whole nuring school process and she says it was the best decision she ever made in her entire life. I just want to give you some encouraging words to stick with it if you ever get disheartened because just from seeing my mother in her profession I know that it is worth the hard work.
So good luck with that! and thank you for responding to me.
Brittany
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: New Member
Thank you for the words of encouragement about nursing school. I am in my 2nd yr out of 3. We just got our first test back and scores are LOW. I passed, but not well, though the tendency for this first class test is 2/3 FAIL rate as it's med-surge II. So I should be pleased that I managed to pass.
Take care!
Marieke (31, LOBPI)
Take care!
Marieke (31, LOBPI)
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rachelcasa
- Posts: 729
- Joined: Mon Apr 21, 2003 11:45 pm
Re: New Member
Brittany,
Welcome to the boards and I'm glad you found our family. It is such an amazing experience once you find UBPN. There are so many great people in here who are a wealth of information. No matter what your problem small or large people in here truly do care about one another.
Again a nice warm welcome to you.
*HUGS*
Rachel from Montana
Welcome to the boards and I'm glad you found our family. It is such an amazing experience once you find UBPN. There are so many great people in here who are a wealth of information. No matter what your problem small or large people in here truly do care about one another.
Again a nice warm welcome to you.
*HUGS*
Rachel from Montana