Introductions thanks to 20/20...lurkers welcome

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
Jake'smom
Posts: 229
Joined: Fri Mar 24, 2006 10:52 am

Re: Introductions thanks to 20/20...lurkers welcome

Post by Jake'smom »

I come here from time to time and read but don't post. My son was born recently with ROBPI. He is doing very well. He is only 3 months but only still has trouble with a weak bicep and external rotation. Coming here and reading your posts has helped me so much. I was devastated by the injury to my son..but reading what you write has helped to know that this is not the end of the world and he will be ok no matter what. So thanks for everything!
Shari
Judy-T
Posts: 557
Joined: Fri Nov 02, 2001 11:59 am
Injury Description, Date, extent, surgical intervention etc: Right arm OBPI One surgery at age 40 Ulnar nerve retransposition
Location: Florida

Re: Introductions thanks to 20/20...lurkers welcome

Post by Judy-T »

Glad you posted Shari. I really like your attitude. Remember as your child is growing up let him try anything he wants. He will know his limits. Just let him be a kid.
Judy
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: Introductions thanks to 20/20...lurkers welcome

Post by Kath »

bumping up for all the newbies.

It's nice to read about others who are on the bpi boat.

Kath robpi
Kath robpi/adult

Kathleen Mallozzi
Alatariel
Posts: 4
Joined: Sun Apr 30, 2006 12:58 am

Re: Introductions thanks to 20/20...lurkers welcome

Post by Alatariel »

A young lady came through my line at work today and before I could even grab the scanner she noticed my left arm being somewhat.. awkward. She said she noticed it because her son has BPI - which I had never heard of until she referred to it as Erb's Palsy, a term I'm more familiar with. So we struck up a conversation about it and she jotted down this website for me to look into.

I never watch 20/20 so I have no idea what the topic is in reference to but since this is where the newbies seem to come through at, I decided my best bet was to post here rather than make a new topic.

I'm 20 years old and I have Erb's Palsy or BPI or whatever it's referred to as here in my left arm. It's not as severe as some cases, I guess I'm fortunate enough to have a decent amount of control over it and it has improved from where it was when I was a child. I'm still unable to touch my face unless I kind of crawl my fingers up my neck and onto my face and I can't lift my arm over my head or turn it completely over with the palm facing up, but it could be worse.

My mother always intended to look into support groups when I was younger and never followed through with it, so this is actually rather surprising to find a message board of people...
Joanie
Posts: 499
Joined: Sat Aug 13, 2005 9:03 am

Re: Introductions thanks to 20/20...lurkers welcome

Post by Joanie »

Welcome Lauren,

Glad you found us, but sorry you had a need to find us.

There is a wealth of information here, on many topics, so read on. I was 56 before I found UBPN and met someone else with an injured arm. I never dreamed there were so many others, or that babies were still being injured this way. I'm glad that you found us at age 20, even though you didn't have a support group when you were a child.

Since you didn't mention an accident sometime after birth, which would indicate a traumatic injury, it sounds like you were injured at birth. That makes you LOBPI - Left Obstetrically Brachial Plexus Injured. So am I.

I'm sure others will chime in with their welcome, too.

Joanie, LOBPI, age 57
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: Introductions thanks to 20/20...lurkers welcome

Post by Carolyn J »

Welcome Lauren!
Yes, there is soo much support here as well as information on all the Message Boards,on the "General Message Board" too. We are are all like family, truly because although each injuy is individual, we share alot of the same experiences & emotions.

I am 67 with LOBPI(Erb's Palsy on my left side) & only found a name for this injury in 2004 and this site opened up a whole new world and now I am 29 years younger!!I also raised an only son with multible disabilities and NEVER thought of looking into anything for me..go figure! Some people are slooow learners. BTW, be prepared, we women have a wicked sense of humor..it makes life easier.

Keep coming back here, you are welcome on every Message Board and there are alot of Resources on the "Resource" link on the Home Page. I can't think about anything more until I have my 1st cup of coffee..Where are you located?
Hugs,
Carolyn J
LOBPI
Carolyn J
Adult LOBPI
Alatariel
Posts: 4
Joined: Sun Apr 30, 2006 12:58 am

Re: Introductions thanks to 20/20...lurkers welcome

Post by Alatariel »

I just moved to Phoenix, AZ about a month ago.

I do have a bith injury, I figured I didn't need to state it since this was the forum for it. I was 10 lbs at birth and my mother was scheduled for a C section which never occurred because the doctor was out to lunch and wouldn't call in someone else. So when he finally dragged his sorry rear back to my mother, I was in the birth canal and the nurses were trying to hold me there. So he grabs me by the back of the neck and lifts -up-, the idiot... When I was much younger I had a physical therapist at my school, but after we moved such a thing was unavailable and so I was just sort of overlooked and forced to deal. There was no school in any area close to us that offered a physical therapy program, nor were there any private therapists available.

And by the time my mother got the idea to sue the doctor (I was 12 by then) he had JUST died when his private plane crashed. C'est la vie, I suppose.
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: Introductions thanks to 20/20...lurkers welcome

Post by Carolyn J »

Alatariel...
There is a support group in the Phoenix Area. I'm sure someone will "chime" in after the weekend...
Carolyn J
Carolyn J
Adult LOBPI
Alatariel
Posts: 4
Joined: Sun Apr 30, 2006 12:58 am

Re: Introductions thanks to 20/20...lurkers welcome

Post by Alatariel »

My work schedule would greatly interfere with a real-time support group of any sort, adding into the fact that my transportation is limited now that my car is living in Alabama.

You guys seriously need to get onto IRC or something @.@
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: Introductions thanks to 20/20...lurkers welcome

Post by Carolyn J »

Amy T has a Thursday night Live chat on her personal web site. Every Thursday she posts a reminder.It is very well attended and popular.
Carolyn J
Adult LOBPI
Locked