does erbs palsy get any1 else down?
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does erbs palsy get any1 else down?
hi.I never knew there was any sites like this but i was searchin to see if there was any treatment to sort erbs palsy. Iv had it since birth and im 16 now and ever since i can remember iv been teased about it! i get called all sorts of stuff, robot, spastic, horrible things that get me down so much. But unfortunately iv discovered that there is nuthin that will actually heal my arm and make me look "normal". I do not know what "normal" is but that is how i would like to look. sometimes my arm doesnt bother me but whne i look at pictures of me with my friends and we were having a great time and then i notice my arm and it looks very "bent" it just takes the fun right out of the moment. i cry alot but dont like to discuss it with my parents bcos i dont want them to think that it was their fault and that im not happy with the way i look or my life. bcos i hav had a great like and its just begin but i want a nice arm for my older life. i hav a sister and when she was born i was 14 and i held her for the 1st time and it felt great and she was just hours old, my arm froze, the nerves tightend and my sister landed on her head!everyone was mad at me but it couldnt be helped!now im not allowed to hold babies! i dont want this to be the case when its my own! does any one else ever feel upset about the way they look? please reply to this. Michelle, Scotland
Re: does erbs palsy get any1 else down?
Dear Michelle:
First of all, I remember there were times growing up when I felt different from other kids and became upset especially when I heard the term "spastic". It's such a derogatory word and to certain groups like cerebral palsy and brachial plexus palsy victims it can be very hurtful. Keep in mind that ignorance is the reason for such hurtful behavior.
Photos certainly can be a problem. Sometimes I'll try hold my hands in front of me or put my OBPI hand behind my back or rest it on someone else's shoulder.
Holding infants can be intimidating but there are some tricks to use (I remember being especially careful when I held my children and lately my grandchildren). I tried to hold them while sitting in an arm chair but, if standing, I'll place my non-OBPI arm around their lower torso and my OBPI arm on their upper back or holding on to my non-OBPI arm. A squirming child can be a challenge sometimes!!
Finally, you need to discuss your concerns with your parents. They need to be aware of the feelings you have.
First of all, I remember there were times growing up when I felt different from other kids and became upset especially when I heard the term "spastic". It's such a derogatory word and to certain groups like cerebral palsy and brachial plexus palsy victims it can be very hurtful. Keep in mind that ignorance is the reason for such hurtful behavior.
Photos certainly can be a problem. Sometimes I'll try hold my hands in front of me or put my OBPI hand behind my back or rest it on someone else's shoulder.
Holding infants can be intimidating but there are some tricks to use (I remember being especially careful when I held my children and lately my grandchildren). I tried to hold them while sitting in an arm chair but, if standing, I'll place my non-OBPI arm around their lower torso and my OBPI arm on their upper back or holding on to my non-OBPI arm. A squirming child can be a challenge sometimes!!
Finally, you need to discuss your concerns with your parents. They need to be aware of the feelings you have.
Re: does erbs palsy get any1 else down?
Michelle:
I'm sorry you are having so much heartache!! I can relate to being tormented by schoolmates. I am now 45 years old and was born with Erbs in both my arms. It is a hard pill to swallow that you were injured in this manner and that you may never look "normal" like your friends. The thing to remember is that you ARE NORMAL for you!!! Try to make time every day to accentuate the POSITIVE things about you and your life. You said you look at pictures of you and your friends, well, that's a positive thing right there!! You have friends who know and love you and accept you the way you are......that's a wonderful blessing right there. I know it's a hard thing to beleive at 16, but trust me I was 16 once myself.........Life is as wonderful as you want to make it!!!! I have had a great life myself, and a lot of it has had to do with the fact that i DID NOT dwell on things that I could not do, but rather on all the things I could do
Another thing I would suggest Michelle, is that you take some time to sit down with you family and discuss how your feeling. You might be surprised at how supposrtive family members can be if you just include them in your feelings
Good Luck, and post again soon..........
Tina
I'm sorry you are having so much heartache!! I can relate to being tormented by schoolmates. I am now 45 years old and was born with Erbs in both my arms. It is a hard pill to swallow that you were injured in this manner and that you may never look "normal" like your friends. The thing to remember is that you ARE NORMAL for you!!! Try to make time every day to accentuate the POSITIVE things about you and your life. You said you look at pictures of you and your friends, well, that's a positive thing right there!! You have friends who know and love you and accept you the way you are......that's a wonderful blessing right there. I know it's a hard thing to beleive at 16, but trust me I was 16 once myself.........Life is as wonderful as you want to make it!!!! I have had a great life myself, and a lot of it has had to do with the fact that i DID NOT dwell on things that I could not do, but rather on all the things I could do
Another thing I would suggest Michelle, is that you take some time to sit down with you family and discuss how your feeling. You might be surprised at how supposrtive family members can be if you just include them in your feelings
Good Luck, and post again soon..........
Tina
Re: does erbs palsy get any1 else down?
Hi Michelle,
Welcome to our community! I have an eight year old son with a left obpi. I'm glad you found us, and I can see you've already had some great words of encouragment posted above. I'd like to add that I agree, you should discuss your feelings with your parents, I hope that as my son grows up he continues to share his feelings with me, especially when he is feeling down and in need of support, I'll be happy to give him as much love and support as I can, and I'm sure your parents feel the same way!
Also, I don't know about your particular injury, but my son also had a serious elbow contracture (makes the arm look "bent") and he had biceps lengthening surgery last summer that really helped his arm to straighten and hang more "naturally" at his side. He was delighted, as I guess this is the thing most noticeable that people comment on about his arm. This may be something you wish to look into for yourself ?
Whatever you decide, just know that we support you and are here for you whenever you need ask questions, to vent or share good news, whatever!!
Best of luck,
Bridget
Welcome to our community! I have an eight year old son with a left obpi. I'm glad you found us, and I can see you've already had some great words of encouragment posted above. I'd like to add that I agree, you should discuss your feelings with your parents, I hope that as my son grows up he continues to share his feelings with me, especially when he is feeling down and in need of support, I'll be happy to give him as much love and support as I can, and I'm sure your parents feel the same way!
Also, I don't know about your particular injury, but my son also had a serious elbow contracture (makes the arm look "bent") and he had biceps lengthening surgery last summer that really helped his arm to straighten and hang more "naturally" at his side. He was delighted, as I guess this is the thing most noticeable that people comment on about his arm. This may be something you wish to look into for yourself ?
Whatever you decide, just know that we support you and are here for you whenever you need ask questions, to vent or share good news, whatever!!
Best of luck,
Bridget
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patpxc
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- Injury Description, Date, extent, surgical intervention etc: C-5 and C-6. Unable to supinate. Contracture elbow. Wrist bone underdeveloped.
Can raise forearm to mouth level. shoulder is limited in movement. Unable to put arm behind back. Secondary- early arthritis, carpal tunnel, pronator syndrome,scoliosis - Location: Ohio
Re: does erbs palsy get any1 else down?
Michelle,
Nice name. My daughter is named Michelle.I'm 48 right arm Erb's Palsy. I have 2 kids. They're both grown now. I always he;d them in the good arm and used the Erb's one for support. It's hard to know what to say to you. The arm won't ever be perfect. What I can say is that most of us adults have married,raised families, had careers ( I'm a nurse) and had full lives. Don't let the arm win. Keep your spirits up. Talk to your family. You need to get those feelings out. Maybe you could let your parents read the posts. There is a lot of new things that might help to give you some more movement in your arm. They din't do surgery when I was young. What kinds of things do you like to do for fun? Feeling different is really difficult. Come to this board often . Write anything you want. We're all in the same boat. We all get angry. All the people here will listen to you. It really helps Good luck. Pat
Nice name. My daughter is named Michelle.I'm 48 right arm Erb's Palsy. I have 2 kids. They're both grown now. I always he;d them in the good arm and used the Erb's one for support. It's hard to know what to say to you. The arm won't ever be perfect. What I can say is that most of us adults have married,raised families, had careers ( I'm a nurse) and had full lives. Don't let the arm win. Keep your spirits up. Talk to your family. You need to get those feelings out. Maybe you could let your parents read the posts. There is a lot of new things that might help to give you some more movement in your arm. They din't do surgery when I was young. What kinds of things do you like to do for fun? Feeling different is really difficult. Come to this board often . Write anything you want. We're all in the same boat. We all get angry. All the people here will listen to you. It really helps Good luck. Pat
Re: does erbs palsy get any1 else down?
Michelle
I am so glad you posted and glad you found a place where people can answer your questions or just support you when you are feeling down and alone.
I am Kathleen ( aka Kath) I am 62 and right obpi.
I have had a full life with Erb's and sometimes it was very tough but I learned to be strong because of it and in some ways I think it has made me better and kinder and more understanding of others. At least I hope so.
Please feel free to ask any question...nothing is silly and all posting on this board really do understand how hard it is to be a teen ager or young adult and be different...
I see you are from Scotland. We have another young woman posting from Scotland Janny... I hope she reads this...
Welcome to the board
Hope I can help....
Kath
I am so glad you posted and glad you found a place where people can answer your questions or just support you when you are feeling down and alone.
I am Kathleen ( aka Kath) I am 62 and right obpi.
I have had a full life with Erb's and sometimes it was very tough but I learned to be strong because of it and in some ways I think it has made me better and kinder and more understanding of others. At least I hope so.
Please feel free to ask any question...nothing is silly and all posting on this board really do understand how hard it is to be a teen ager or young adult and be different...
I see you are from Scotland. We have another young woman posting from Scotland Janny... I hope she reads this...
Welcome to the board
Hope I can help....
Kath
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admin
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Re: does erbs palsy get any1 else down?
Hi Michelle, I am 23 & I have BP on my right side. I remember growing up and getting teased. But I think that there were a couple people that would stick up for me back then. Most people didn't notice like I thought they did. I've had people in high school that I had to tell because they never noticed, and they knew me since elementary school.
As for looking at yourself in pictures, I completely understand. I am pretty much a peace with my self now, but I won't stand in front of a camera with both arms down, matter of fact I always keep them either crossed somehow in front of me or in a pocket or something.
I think the biggest issue for me is the flab I have on that arm. I was a big kid and I lost weight in middle school, but my arm is still over weight. I have a sort of roll of skin over my elbow. That bugs me the most, but I'm getting better with it. I am getting married in August and I am wearing a sleevless dress, no sense in letting it ruin my big day.
Now, as for the baby situation, I understand that sort of. I am actually afraid to hold a baby. People have offered, and I just tell them I am too nervous. Also lately I've been worried about how I will handle my own and if I can do it. But after reading about so many mothers with BP I feel better.
This is a great place to come and share your concerns and problems and accomplishments. I feel like I found my own secret family that no one I know or have personally met could understand the importance of this site.
Keep smiling. Life's too short to feel down so often. And Laugh as much as possible.
Traci
As for looking at yourself in pictures, I completely understand. I am pretty much a peace with my self now, but I won't stand in front of a camera with both arms down, matter of fact I always keep them either crossed somehow in front of me or in a pocket or something.
I think the biggest issue for me is the flab I have on that arm. I was a big kid and I lost weight in middle school, but my arm is still over weight. I have a sort of roll of skin over my elbow. That bugs me the most, but I'm getting better with it. I am getting married in August and I am wearing a sleevless dress, no sense in letting it ruin my big day.
Now, as for the baby situation, I understand that sort of. I am actually afraid to hold a baby. People have offered, and I just tell them I am too nervous. Also lately I've been worried about how I will handle my own and if I can do it. But after reading about so many mothers with BP I feel better.
This is a great place to come and share your concerns and problems and accomplishments. I feel like I found my own secret family that no one I know or have personally met could understand the importance of this site.
Keep smiling. Life's too short to feel down so often. And Laugh as much as possible.
Traci
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admin
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Re: does erbs palsy get any1 else down?
Thanx for all the support. this is great! uz make me feel so happy to know that there REALLY are people in the same situation as me. I hav always seen people who are handicapped or hav things like downs syndrome but never anyone with Erb palsy and i asked my mum why am i the only one and i was always told...ur not, there are many people out there but it confused me because there is lots of people in Scotland and iv been to England and abroad and still everyone has two proper arms. i always wanted to talk to someone with the same "problem" so i am really grateful for this site. its fab! I took ur advice and hav spoken to my parents and im goin to see a consultant about havin some treatment to improve the way my arm hangs. so i will keep u updated but i would b really gratefull i could keep talking to people at this site. its great support. to b honest, i had a lump in my throat and a tear in my eye readin your replies(i didnt expect any) i am so happy i have contacted people! THANK YOU ALL!! Michelle x
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admin
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Re: does erbs palsy get any1 else down?
Hi Michelle,
i was interested in your message. I have a 10 year old son with Erb's Palsy and our family is closely involved with the Erb's Palsy Group in Great Britain.
if you feel you would like to contact us and meet up with other young adults in your region we can put you in touch with them, either by e mail or in person.
If you would like to know more about our group, you can e mail me on; erbspalsygroup@supanet.com
I hope to hear from you
Karen
i was interested in your message. I have a 10 year old son with Erb's Palsy and our family is closely involved with the Erb's Palsy Group in Great Britain.
if you feel you would like to contact us and meet up with other young adults in your region we can put you in touch with them, either by e mail or in person.
If you would like to know more about our group, you can e mail me on; erbspalsygroup@supanet.com
I hope to hear from you
Karen
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Janny_scotland
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Re: does erbs palsy get any1 else down?
hi michelle. im janny 29 and right obpi. i also live in scotland....and if its any consolation, ive never seen another erbs arm either!!
where are you in scotland? im in fraserburgh,just north of aberdeen
ive only had one surgery (woodend hospital, aberdeen)and since having it, i dont think the arm is quite so noticeable as it was before (doesnt stick out quite as much!)
as for the baby thing...ive got 2 kids of my own and never once dropped them as babies but just recently i picked up my baby neice....and promptly dropped her on her head...just like you, so dont worry about it!!
take care and feel free to email me if you want
janny
where are you in scotland? im in fraserburgh,just north of aberdeen
ive only had one surgery (woodend hospital, aberdeen)and since having it, i dont think the arm is quite so noticeable as it was before (doesnt stick out quite as much!)
as for the baby thing...ive got 2 kids of my own and never once dropped them as babies but just recently i picked up my baby neice....and promptly dropped her on her head...just like you, so dont worry about it!!
take care and feel free to email me if you want
janny