New to UBPN

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
John Clark
Posts: 6
Joined: Wed Jul 27, 2011 7:06 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI from birth Dec 1964

New to UBPN

Post by John Clark »

I have had Erb's Palsy from birth - almost 47 years now. My left arm was significantly injured during child birth. My shoulder has not developed correctly - it is only extended a few inches from my neck. My elbow does not fully extend straight. And my wrist does not have the correct range of motion. I cannot lift my arm above my head. This hasn't stopped me from doing the things I have wanted to do in my life. I played sports as a kid... in fact I excelled. I know that my injury was a motivation to not only do as well as other kids but to do even better. Emotionally I have coped. I do think that I have some repressed feelings though. Thus this is why I am here I guess. This is a great forum to share my experience and to hear how others have navigated through their own journey. I look forward to opening up and helping others and to take away some motivation and inspiration myself. Thanks in advance for letting me contribute and take some gifts away!
- John
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 to UBPN

Post by Carolyn J »

Welcome John to the UBPN Family. I hope you come back often. We learn soooo much from one another. Did you see the post about a Mayo Study on OBPI adults? We all need to support this because there are alot of medical issues as we age.
Carolyn J
LOBPI/ 73 & still learning stuff 8-)
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 UBPN

Post by Kath »

Welcome John!

You have quite a journey of discovery ahead of you. I've been around her so long but when I first found UBPN there were only 4 adult obpi. I was sure that this was a rare injury and I was part of a rare group. Sorry be we are not as rare as most of us thought we were.

It's important to study your own injury and learn as much as you can about it. We all have different range of motion etc. BPI injury is almost like a finger print, we all heal differently and giving us some of that same issues and some unusual ones.

As as many questions as you would like. We all had so many questions and by comparing our issues we discovered many things we had in common that were due to bpi issues.
Like holding things in our hands and looking for them.
What may seem like a foolish/silly question really has helped everyone to understand it was not just their issue... but a bpi issue.
Kath robpi/adult

Kathleen Mallozzi
John Clark
Posts: 6
Joined: Wed Jul 27, 2011 7:06 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI from birth Dec 1964

Re: New to UBPN

Post by John Clark »

Thanks Kath! My first question would be if the development of my shoulder is common among OBPI. From the photos I have seen I think it's not very common. I know the length of the effected arm is often shorter and mine certainly is but the size of the shoulder I am not so sure about. My effected shoulder is significantly smaller than my other shoulder. I am fortunate in that I am not in pain. Never have been. I really feel for those who are! Is shoulder size/development a common issue? I could post a photo somewhere on this site I guess if that helps
Thanks!
- John
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 UBPN

Post by Kath »

John
As smaller should is probably more noticeable on a man. Yes, it is common and many people complain about the difference. I don't know if it is because of the position our shoulders are in. Many have scapular winging. I was not even aware of that until I saw a photo of me taken from the back on the beach. I was about 20 then and was so annoyed when I noticed it.

A lot of our physical healing is different, depending on the degree of the injury and the nerves involved. I found ubpn when it was only 6 months old and assumed I had a mild injury. That is not true but glad that is what I thought for most of my life. My arm will hang straight down but my shoulder moves my arm. I can't supinate nor can I touch my face without a trumpet motion. But if I'm standing in front of you ... you would think I had nothing wrong. I have a 3-1/2" difference between my arms.
Kath robpi/adult

Kathleen Mallozzi
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: New to UBPN

Post by Judy-T »

Welcome to the boards John! And welcome to the club that we did not ask to join! My shoulder is smaller too. I think like Kath said, it is probably more noticable in the males. Where are you located. I hope that you can help with the study that the Mayo is conducting. This is a First! To my knowledge,The adult population has never been studied .
If you have any questions ask away. When I found other people injured like me it was an eye opening experience. Just knowing that you are not alone in this and that others are out there and can give you advice is a good feeling.

Judy (50 ROBPI)
User avatar
LJSL0330
Posts: 52
Joined: Wed Feb 27, 2008 9:09 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. Only surgical intervention was muscle lengthening at 2-3 y/o. PT at 35 which increased passive ROM by did not improve active ROM. Also have scoliosis due to left shoulder "hiking."
Location: Evansville, Indiana

Re: New to UBPN

Post by LJSL0330 »

Hi John and welcome to UBPN. It was unbelievable to me when I first got involved with the UBPN boards how much I felt like instant family with everyone else here! I know you will find the same!

It sounds like we have very similar injuries. My greatest issue is my shoulder. I don't think mine is significantly smaller that the other, but my effected arm slopes at the joint where the arm and shoulder meet and doesn't "square" like the other one. Yet it "hikes" quite a bit closer to the neck. That hike causes my spine to be out of line, significantly out of line. Hello uncorrectable scoliosis! (Chances are you have scoliosis too, just never diagnosed. Mine wasn't until I was 40! Until then it was just because of my "crippled arm." I said something about that to Dr. Nath and called it "secondary scoliosis." He said "There's no secondary to it; you have scoliosis, there's just not anything that can be done for it.")

I have the same "locked" elbow too although I can't for the life of me remember the medical term right at the moment! Overdevelopment of the bicep muscle happens because there is no tricep muscle development to counterbalance it. The bicep allows us to bend the elbow, the tricep allows us to straighten it. So when one is developed more that the other, that's the only function we can do with it! I've had some therapy on that bicep and although I'll never be able to straighten my elbow, my arm does "hang" more naturally.

I also have the lack of range of motion in the wrist. Overall though, I have better use of that arm and hand than many with an OBPI have. I bet that you do too. Especially if you excelled in sports when you were a kid.

I've never had pain with my affected shoulder either but I've had a lot with my other shoulder. It's caused by overworking that shoulder to make up for not being able to use both fully. So baby your "good" shoulder and also, be careful with your back.

OK, enough unsolicited advice! Welcome! If I can help you on your journey in anyway, please do not hesitate to contact me! You can do it via email if you don't want to poat it on the board. (Lockridge_Lisa@yahoo.com) And COME TO CAMP! It is an awesome experience that will change you in ways you can't imagine! Plus you don't want to miss the adult OPBI only room party that my husband and I will be throwing! :)
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 to UBPN

Post by Carolyn J »

Hello John & Lisa,
I hope you both contact Judy and participate in this Adult OBPI Study by Dr. E at Mayo. BTW, Dr. E is a Shoulder Specialist. :)
Carolyn J
LOBPI/73
User avatar
LJSL0330
Posts: 52
Joined: Wed Feb 27, 2008 9:09 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. Only surgical intervention was muscle lengthening at 2-3 y/o. PT at 35 which increased passive ROM by did not improve active ROM. Also have scoliosis due to left shoulder "hiking."
Location: Evansville, Indiana

Re: New to UBPN

Post by LJSL0330 »

Already have! But I'm not too optomistic about anything being done for my shoulder. It has grown "deformed," so I kind of doubt much can be done.
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 to UBPN

Post by Carolyn J »

:mrgreen: 8-) ,Lisa
HUgs,
Carolyn J
Locked