Hello all. My name is Amber and I am a 16 (soon-to-be-17) teenager who suffers from an OBPI. I'm new to this website, but it appears that everyone is friendly. Ive always been a little insecure about my injury because ive never met anyone with it. I am really interested in finding out more about other people's cases of OBPI , so I am asking that you PLEASE fill out an anonymous survey to assist me in my Senior Research Project. By filling out the survey you are giving consent to allow your information to be displayed collectively as part of my research. The link is listed below. I look forward to your responses!
http://www.surveymonkey.com/s/F2NQSHG
Please Help!
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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: Please Help!
Welcome Amber!
There are a small group of teen girls on the "Adults & Teens with OBPI" Message Board. Please post there too.
Also, FYI,our "BPI Stories" are on the far right of our posts. ---> Mine is a little long
I hope Becka and Elizabeth see your post here and respond.
FYI your survey was not too accurate because it left no place for a comment...like NOW I am OK but grew up very depressed & have had several years of Counseling to help...that's just 1 example.
Carolyn J
LOBPI/72++++
There are a small group of teen girls on the "Adults & Teens with OBPI" Message Board. Please post there too.
Also, FYI,our "BPI Stories" are on the far right of our posts. ---> Mine is a little long
I hope Becka and Elizabeth see your post here and respond.
FYI your survey was not too accurate because it left no place for a comment...like NOW I am OK but grew up very depressed & have had several years of Counseling to help...that's just 1 example.
Carolyn J
LOBPI/72++++
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AHEIBECK
- Posts: 4
- Joined: Wed Feb 02, 2011 11:04 am
- Injury Description, Date, extent, surgical intervention etc: OBPI, athlete. play lacrosee and competitive cheerleading. 16 years old.
Re: Please Help!
Thank you so much for the feedback! I'll try to add a comment box 
This website is really cool to me; i never knew that soooo many people were like me! ha, guess its not so "rare". Anyway, im not sure where the teen message board is?
-Amber*
This website is really cool to me; i never knew that soooo many people were like me! ha, guess its not so "rare". Anyway, im not sure where the teen message board is?-Amber*
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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: Please Help!
The teen board is "hidden" until you join, email/pm rich looby and he can set you up
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karategirl1kyu
- Posts: 363
- Joined: Mon Feb 19, 2007 12:59 am
- Injury Description, Date, extent, surgical intervention etc: LOBPI, had surgery when I was 9- they moved muscles and tendons from one side of my arm to the other side. I can lift my arm to about my eye level, can't straigten it all the way and can't completely supinate my wrist.
- Location: Richmond, RI
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F-Litz
- Posts: 970
- Joined: Fri May 26, 2006 6:53 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
- Location: Ambler, PA
Re: Please Help!
I filled out the survey for my daughter but I have a note about it - there was no place on the survey for a note....
Even though I filled out the checkmark bottom list, in our particular case, please don't connect the list with Maia's bpi.
As I see it, the bottom list (for Maia) is more related to normal puberty and hormonal changes and the possibility of her having thyroid disease which we are seeing specialists for. Also, any one of those symptoms can be diet and activity-level related. I know that when Maia's diet is out of whack - Maia is out of whack - she is depressed, sleeps more, is more irritable, doesn't want to go out and get fresh air -- just every part of her breaks down. And when she is eating well and exercising more - she has few or none of those symptoms. But none of them are directly related to her bpi issues.
good luck
-francine
Even though I filled out the checkmark bottom list, in our particular case, please don't connect the list with Maia's bpi.
As I see it, the bottom list (for Maia) is more related to normal puberty and hormonal changes and the possibility of her having thyroid disease which we are seeing specialists for. Also, any one of those symptoms can be diet and activity-level related. I know that when Maia's diet is out of whack - Maia is out of whack - she is depressed, sleeps more, is more irritable, doesn't want to go out and get fresh air -- just every part of her breaks down. And when she is eating well and exercising more - she has few or none of those symptoms. But none of them are directly related to her bpi issues.
good luck
-francine