Coping with Palsy as a teen

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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Violet
Posts: 1
Joined: Sun Apr 10, 2011 10:15 pm
Injury Description, Date, extent, surgical intervention etc: My name is Violet. I'm 15 and I have Erb's Palsy in my left arm from birth.
I had surgery on my shoulder when I was three years old, done in Texas,
and I still go to physical therapy once a week.

Re: Coping with Palsy as a teen

Post by Violet »

What has helped me was finding something that I could do that my arm was also good at.
I completely agree with Jennifer. I'm fifteen and I always wanted to play sports when I was younger. I loved gymnastics and tried it, but it was so frustrating to me that I had to do different exercises than everyone else. I would have loved to play volleyball, softball, basketball, anything - but, of course, that was also frustrating. When I took up running, I figured that it wouldn't have much to do with my arm, but I was surprised to see how much you need both of your arms for running.

But at the same time, I can run, and I run varsity for my high school's cross country and track teams. Sprinting is difficult, but I love distance running. And although it can be very painful, I'm surrounded by my teammates, who may not understand what it feels like, but they understand what's going on and are extremely supportive. Without the help of my teammates, I don't know where I'd be.
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Becka
Posts: 21
Joined: Tue Mar 01, 2011 8:56 am
Injury Description, Date, extent, surgical intervention etc: I was born with bpi, I am now 13 and have had two surgeries for my injuries. My mother found this website 13 years ago and I attended the second camp (not that I remember, I was only two) Now it is time to me to handle my injury instead of my mother.

Re: Coping with Palsy as a teen

Post by Becka »

I also loved sports, i wanted to join flag football but my mom said i can't because of my left arm so i had to join soccer instead, i also hate soccer! :?
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carolinereilly408
Posts: 1
Joined: Sun May 08, 2011 1:16 pm

Re: Coping with Palsy as a teen

Post by carolinereilly408 »

Hi my names caroline and i am also 16 and a sophomore with brachial plexus and erbs palsy. I agree with the sports thing because I love lacrosse and am on varsity lacrosse and when i was younger i was told i could never play lacrosse. I suprised the doctors by my willingness to try sports and even though some i just had no way of playing because of my injury, others i could do most of the same things other girls did. I never was able to do gymnastics or cheerleading or softball because i couldnt catch the ball with my right arm or throw it. It is hard to explain how hard i try in sports to friends because i struggle to just catch a ball with ease when my friends can do it naturally. I think that if oyu find something you love and put your heart into it you will feel much better about your injury. I would love to talk to anyone else in high school with OBPI because i dont know anoyne else with it and would like to be able to relate with someone else with the injuries. I also am wondering has anyone had a surgery when they were 14- 18 because I may need another one but i'm not sure hhow hard it would be to go through another airplane cast in high school?
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Elizabeth Beaulieu
Posts: 25
Joined: Wed Dec 08, 2010 7:54 pm
Injury Description, Date, extent, surgical intervention etc: Right Brachial Plexus birth injury
Location: Maine, USA

Re: Coping with Palsy as a teen

Post by Elizabeth Beaulieu »

carolinereilly408 wrote:Hi my names caroline and i am also 16 and a sophomore with brachial plexus and erbs palsy. I agree with the sports thing because I love lacrosse and am on varsity lacrosse and when i was younger i was told i could never play lacrosse. I suprised the doctors by my willingness to try sports and even though some i just had no way of playing because of my injury, others i could do most of the same things other girls did. I never was able to do gymnastics or cheerleading or softball because i couldnt catch the ball with my right arm or throw it. It is hard to explain how hard i try in sports to friends because i struggle to just catch a ball with ease when my friends can do it naturally. I think that if oyu find something you love and put your heart into it you will feel much better about your injury. I would love to talk to anyone else in high school with OBPI because i dont know anoyne else with it and would like to be able to relate with someone else with the injuries. I also am wondering has anyone had a surgery when they were 14- 18 because I may need another one but i'm not sure hhow hard it would be to go through another airplane cast in high school?
Hi, my name is Elizabeth and I have a right BPI, I'm 17 years old. I recently just had a surgery. I fused my wrist and had a tendon transfer to my thumb. I live in a really small town and everyone knows me. So, when I got another surgery, nothing really changed. Everyone still treated me the same. If you have any questions, feel free to ask. :)
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Becka
Posts: 21
Joined: Tue Mar 01, 2011 8:56 am
Injury Description, Date, extent, surgical intervention etc: I was born with bpi, I am now 13 and have had two surgeries for my injuries. My mother found this website 13 years ago and I attended the second camp (not that I remember, I was only two) Now it is time to me to handle my injury instead of my mother.

Re: Coping with Palsy as a teen

Post by Becka »

Hey all I have a quick question to ask you. When u r 13 and your arm is almost done growing is it true that after 13 your arm fully stops growing in the bones?
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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

Re: Coping with Palsy as a teen

Post by karategirl1kyu »

i believe bones grow until you are 17-18
~Mel/23/LOBPI
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SarahxG
Posts: 64
Joined: Mon Sep 21, 2009 9:33 pm
Injury Description, Date, extent, surgical intervention etc: To make an incredibly LONG story short...
When I was born, my mother's doctor was out of town. A doctor that would not perform c-sections was forced upon us. Being 10 lbs, my right shoulder got stuck under my mom's pubic bone. The doctor pulled me out by my head, which ripped/streched all the nerves in my neck and arm (So, OBPI).
I've had two surgeries at 9 months old, and 3 years old.
My mother suffered as well. She needed both brain surgery and a shunt--She still sufferes today.
My parents lost the court case due to a terrible jurey.

That's about it!
Hope I can find somebody my age to talk to :)

Re: Coping with Palsy as a teen

Post by SarahxG »

carolinereilly408 wrote:Hi my names caroline and i am also 16 and a sophomore with brachial plexus and erbs palsy. I agree with the sports thing because I love lacrosse and am on varsity lacrosse and when i was younger i was told i could never play lacrosse. I suprised the doctors by my willingness to try sports and even though some i just had no way of playing because of my injury, others i could do most of the same things other girls did. I never was able to do gymnastics or cheerleading or softball because i couldnt catch the ball with my right arm or throw it. It is hard to explain how hard i try in sports to friends because i struggle to just catch a ball with ease when my friends can do it naturally. I think that if oyu find something you love and put your heart into it you will feel much better about your injury. I would love to talk to anyone else in high school with OBPI because i dont know anoyne else with it and would like to be able to relate with someone else with the injuries. I also am wondering has anyone had a surgery when they were 14- 18 because I may need another one but i'm not sure hhow hard it would be to go through another airplane cast in high school?

Hello Caroline! My name is Sarah and I am also a sophomore with OBPI! I've played sports since I was a little kid, so I definitely understand how hard it is to explain how hard you try. If you'd ever care to talk you can send me a message or email me at SarahxG@yahoo.com :)
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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:
Contact Carolyn J

Re: Coping with Palsy as a teen

Post by Carolyn J »

WELCOME to UBPN Family, Sarah!
Please come back often.
Carolyn J
LOBPI/73
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Becka
Posts: 21
Joined: Tue Mar 01, 2011 8:56 am
Injury Description, Date, extent, surgical intervention etc: I was born with bpi, I am now 13 and have had two surgeries for my injuries. My mother found this website 13 years ago and I attended the second camp (not that I remember, I was only two) Now it is time to me to handle my injury instead of my mother.

Re: Coping with Palsy as a teen

Post by Becka »

karategirl1kyu wrote:i believe bones grow until you are 17-18

ok thanks cause i always freaked out that if i dont have my surgery my arm will be short for the rest of my life
:|
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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: Coping with Palsy as a teen

Post by John Clark »

Kath: I am new to this board and this is the very first post I read and I think your response was absolutely awesome! I completely agree with everything you wrote and it is really sound advise ! Our impact on this world has nothing to do with our injuries! Others suffer more than we do - it's just that you can see our struggle. With others it might not be so "visible". Our impact is about who we are and how we live our lives. It is not about our physical qualities. Having said that, I was a teenager with LOBPI and I know it's easier said than done. My advise would be to try to understand that other people's cruelty has to do with them, not you!


Kath wrote:Never let yourself be defined by your arm. You are a person with an injured arm. You are not an arm with a person attached.

I don't remember anyone feeling sorry for me... I don't want any sympathy even now with secondary injuries.
Don't ever let this injury take your spirit or take over your life. You can and will do anything you put your mind and efforts into. If you give up and hide because you feel bad or sorry for yourself, you will have a tough life.

When I was little and some kids were teasing me... I learned a good life lesson. My Mom told me " you can sit in the corner and cry and you'll cry alone. Or you can stand up and say...I can do anything you can do." Life is not easy when we are young and learning all the compensations, we have to make, to do the ordinary things in life. We can, however, do everything we really want to do but have to work a little harder.

Only you can make you feel bad about yourself. Don't allow anyone to make you feel sorry or bad about yourself.

If someone says "poor thing" you need to give a positive spin on it. Say "Thanks for the sympathy but I can do anything I want to do and just do it a little different." Say it is a very nice sweet positive way. Let them know that you are a strong, creative person.

I have manage to do any of the things I really wanted to do. I have also learned many skills that I probably would not have even tried if I were not OBPI. OBPI tend to look at new things, wondering if we can do it. We never stop to wonder if we want to do them. As a result many of us have learned things just to see if we can... I know I did.

Keep posting and ask questions. You should also read some of the educational materials on the website so that you have answers for nosy people.
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