So I'm not alone?????

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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: So I'm not alone?????

Post by Kath »

Brandy
I love being a hands on Mom and Grandmother.
I wish I could give you some magic advice on how to preserve your unaffected arm. It really does get overused when taking care of children.

I wish I had asked for help while raising young children and choose better household equipment to make my housework easier.

Now is the time, while you are young, to try to find ways that make it easier for you to do the normal routine tasks of life without straining your back, neck and arms.

Of course we all know that is almost impossible when our babies are small... LOL...
It's like the doctors telling us to nap when the kids were sleeping... I always thought that was funny.

Kath robpi/adult
Kath robpi/adult

Kathleen Mallozzi
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: So I'm not alone?????

Post by Carolyn J »

YES, YES, Brandy & all MOM's with a BPI, PLEASE heed what Kath is saying and help PRESERVE your "good side" as well as your whole body--matter-of-fact! Do it while you are "Young" and you won't suffer the consequences of "DOING-it-all by myself SYNDROME" like Kath and myself & a few others.

HUGS all around,
Carolyn J
LOBPI,age 68


Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
joseph
Posts: 85
Joined: Fri Apr 06, 2007 1:59 am

Re: So I'm not alone?????

Post by joseph »

Hi. I am the mother of a beautiful 8 month boy named Joseph. He has LOBPI. We are just starting out on our journey. Is there any advise you can give me about how to make him feel good about who he is and help him feel like he's no different than anybody else?

Breonna
Phillyking87
Posts: 15
Joined: Mon Feb 20, 2006 3:41 pm

Re: So I'm not alone?????

Post by Phillyking87 »

Hey, I thought I was alone too.
User avatar
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: So I'm not alone?????

Post by marieke »

Joseph,
Love your child, encourage your child in whatever he wants to do, when he feels down about his abilities point out what he can do and how he can do things even if it is done differently from others. He will learn tricks to do things his own way if needed, PT/OT will help with that too.

Keep checking in with others on the message boards as your child grows up. We have tricks we can share.

Good luck to you and your family,
Marieke (31, LOBPI)
http://nurse-to-be08.blogspot.com/
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
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: So I'm not alone?????

Post by Carolyn J »

PhillyKing, WECOME BACK!
It's been awhile...please catch us up on what you are doing. I rememmber your term paper on Brachial Plexus.

No, you are NOT ALONE. There are Many of us here & we are always here on UBPN Message Boards for you. Ask questions, Share and Vent frustrations. There are NO DUMB QUESTIONS on Any of the Forum Message Boards!

HUGS,
Carolyn J
Adult LOBPI,68,& Proud of it!!
Carolyn J
Adult LOBPI
Nila

So I'm not alone?????

Post by Nila »

Hi all,

Much like everyone here I too thought that I was the only one with this injury. I came across some information on a legal website that caught my attention. A mother was describing an injury that her daughter had suffered from and thought Hey that sounds like me she is talking about. It was on that website that I found a name for what I had wrong. I am a 29 y/o OBPI ( i think i got that right?) and I have tons of questions. I have been reading thru a few of the olders threads on this site and I am curious who is Dr Nath? also I have seen a few mentions of Mod Quad surgery? can anyone explain what that entails? I had a few surgeries that started when I was in the 5th grade but I do not know exactly what all was involved. I have so much to ask but I will stop there. I welcome any and all comments that anyone would like to share. My e-mail address id geishagyrL06@yahoo.com Feel free to contact me at anytime. Thanks in advance.


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