BPI Connection

I just registered to this wonderful sight.  Please read my about me.  I would love to talk to just about anyone about my experiences and about their family's experiences.  I'm totally open!  I hope people find great contacts in here, especially the new moms and dads that feel hopeless and alone.  You are not alone.  I promise.  Except for the people I met through online support groups, I felt that way for years.  Thanks again for making this new website!

Hello,

Nice to meet you.  I am a busy mom so may not have a lot of time to come and visit here.

Jameson is 19 now and has had numerous surgeries.  The last was a humeral lengthening (with the ilizarov) with Doctor Vincent here in Tucson.

Teresa

Hello, I just joined your site. My child had rbpi and we have had a tendon surgery going on 1 year. we filed suit and won. We have been in therapy his whole life and feel good about every decision we have made. Any questions I am willing to answer.

Hello!

I have Brachial Plexus Palsy of the right arm from birth.  I'm currently 53 years old.  Although the majority of the people on this site are parents who are concerned about their children, perhaps I can offer a different perspective from the stand point of an older person with the disability.  It's unbelievable how far medicine has come!  I wish some of the surgical advancements were available when I was younger. 

I feel I've been truly blessed with an understanding and helpful family, who never treated me like I was "disabled".  I didn't even know that there was a name for what I had until I was in my 20's!  Neither did I know that I was actually "disabled" until my High School Guidance Counselor told me about the aid I could get for college from the Department of Vocational Rehabilitation.  I've been able to work up until last year, when my arm, shoulder and neck, as well as my back prevented me from continuing to work.  I currently am receiving Social Security Disability.  With the extra time I have now, I'm trying to further my career as a Photographer.

I'm anxious to find out if there are any other older people on your site.  I'm also anxious to meet the new parents who are dealing with their child's PBI.  Perhaps, I can offer some encouraging words and advice in raising a BPI child.  Good luck to all!

Much Love and Blessings,

Cyndi                                                              

Hello all. I'm mom to Kalista 9 and Bradley 6 ROBPI. Bradley's had 5 surgeries to regain use of his arm and is doing very well. I'm currently in nursing school and have three more semesters to go to get my RN. I'm hoping to specialize in pediatrics or labor and delivery.

For those in and around St. Louis we have started a BPI support group.  Our first meeting will be on Tuesday, Nov 11, 2008 at 5:30pm at St. Louis Children's Hospital's Cafeteria.  For more information about upcoming events/meetings please contact me at stlbpi@yahoo.com

at 12:44PM on Oct 25, 2008

Hello!

I have Brachial Plexus Palsy of the right arm from birth.  I'm currently 53 years old.  Although the majority of the people on this site are parents who are concerned about their children, perhaps I can offer a different perspective from the stand point of an older person with the disability.  It's unbelievable how far medicine has come!  I wish some of the surgical advancements were available when I was younger. 

I feel I've been truly blessed with an understanding and helpful family, who never treated me like I was "disabled".  I didn't even know that there was a name for what I had until I was in my 20's!  Neither did I know that I was actually "disabled" until my High School Guidance Counselor told me about the aid I could get for college from the Department of Vocational Rehabilitation.  I've been able to work up until last year, when my arm, shoulder and neck, as well as my back prevented me from continuing to work.  I currently am receiving Social Security Disability.  With the extra time I have now, I'm trying to further my career as a Photographer.

I'm anxious to find out if there are any other older people on your site.  I'm also anxious to meet the new parents who are dealing with their child's PBI.  Perhaps, I can offer some encouraging words and advice in raising a BPI child.  Good luck to all!

Much Love and Blessings,

Cyndi                                                              

Hi Cyndi,

I am a 20 year old who suffers from Erb's Palsy, I'm not sure if we have it to the same extremes though.  I was never offered surgery so haven't had anything to try to correct my right arm where the bpi is, however I have spoken to several doctors and they seem to think it will get worse as I get older.  Just wondering what your experiences were of this?

Regards,

Ali

at 08:44AM on Oct 25, 2008

Hello!

I have Brachial Plexus Palsy of the right arm from birth.  I'm currently 53 years old.  Although the majority of the people on this site are parents who are concerned about their children, perhaps I can offer a different perspective from the stand point of an older person with the disability.  It's unbelievable how far medicine has come!  I wish some of the surgical advancements were available when I was younger. 

I feel I've been truly blessed with an understanding and helpful family, who never treated me like I was "disabled".  I didn't even know that there was a name for what I had until I was in my 20's!  Neither did I know that I was actually "disabled" until my High School Guidance Counselor told me about the aid I could get for college from the Department of Vocational Rehabilitation.  I've been able to work up until last year, when my arm, shoulder and neck, as well as my back prevented me from continuing to work.  I currently am receiving Social Security Disability.  With the extra time I have now, I'm trying to further my career as a Photographer.

I'm anxious to find out if there are any other older people on your site.  I'm also anxious to meet the new parents who are dealing with their child's PBI.  Perhaps, I can offer some encouraging words and advice in raising a BPI child.  Good luck to all!

Much Love and Blessings,

Cyndi                                                              

Hi Cyndi!  I am 24 yrs old, and have had Erb's palsey in my left arm since I was born too large for my mom.  For most of my young life, I didn't understand what was wrong with me, and started learning about Erb's palsey at an age where there was little that could be done from a medical stand point.  I still don't know much about it, but I am trying to fix that.  I'm currently making a living on my own as a young professional trombone player in the Los Angeles Area.  I honestly didn't know that Erb's Palsey was considered a disability until today.  I thought I'd give you a shout since mostly everyone on internet groups are parents of Erb's Palsey affected children looking for information/support.  I've never met anyone else with Erb's Palsey, and just started getting into internet group a couple days ago.

Hi everyone, thank you so much for inviting me to this cool new website!( No clue who invited me but thanks )  I am Lenni, mom to Ashley who has a RBPI and has indeed had a couple of surgeries.  I look forward to supporting, and sharing with each of you.

Lenni

at 08:44AM on Oct 25, 2008

Hello!

I have Brachial Plexus Palsy of the right arm from birth.  I'm currently 53 years old.  Although the majority of the people on this site are parents who are concerned about their children, perhaps I can offer a different perspective from the stand point of an older person with the disability.  It's unbelievable how far medicine has come!  I wish some of the surgical advancements were available when I was younger. 

I feel I've been truly blessed with an understanding and helpful family, who never treated me like I was "disabled".  I didn't even know that there was a name for what I had until I was in my 20's!  Neither did I know that I was actually "disabled" until my High School Guidance Counselor told me about the aid I could get for college from the Department of Vocational Rehabilitation.  I've been able to work up until last year, when my arm, shoulder and neck, as well as my back prevented me from continuing to work.  I currently am receiving Social Security Disability.  With the extra time I have now, I'm trying to further my career as a Photographer.

I'm anxious to find out if there are any other older people on your site.  I'm also anxious to meet the new parents who are dealing with their child's PBI.  Perhaps, I can offer some encouraging words and advice in raising a BPI child.  Good luck to all!

Much Love and Blessings,

Cyndi                                                              

Hello Cindi,

I am 70  and just learned a name for my left-side BP Injuries (LOBPI)/ or Erb's Palsy, at age 66 when I found UBPN web site. www.ubpn.org  I found alot of other adults there and even met them at 2 Family Camps, 2005 & 2007. In sharing we find that we have many "seconardary injuries" in common , especially as we age and because of over-use of our unaffected limbs.

I am open to any questions on the Forum and/or emailing me.It's easier than typing a longer bio one-handed...:/

There is no such thing as a dumb question!!

--sory above is me,

Carolyn

Cyndi we have a large group of adults at UBPN.org and we also have a private message board... It helps to share with your peers and many of our issues and questions can only be answered by other adult/obpi. Chris... I already heard from you... Nice to see that you all are search for answers to so many of the questions you did not even realize you had.