i feel alone
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melbenelbeny
- Posts: 4
- Joined: Sun May 30, 2004 2:07 am
i feel alone
Im 17 yrs old and i live in Australia. I've always thought i was the only one with erbs palsy (bpi) until a few days ago when my mum told me i should try looking on the net for others with the same thing. I've since found pages and pages of people saying they have the same thing, but everyone i write to never writes back. So im just asking that anyone who reads this and has bpi will you please email me. i will write back to any one, any age, male or female from any country. It would mean alot to me. Melanie
melbenelbeny@hotmail.com
melbenelbeny@hotmail.com
Re: i feel alone
Hi! You are so lucky you have found this site at age 17!!! I sooo wish I had had this back then!
I am sorry, I don't give out my email, just cause, well, you never know. But I will give you my AOL IM. It is kamrentx. I will be happy to chat with you there or here:)
It is so wonderful when you realize you aren't alone out there, isn't it? I know I was just shocked. I firmly believe that it is because we have all learned to hid our injury, and not talk about it. We must be proud of ourselves and our bodies. Get out there...tell everyone who will listen. Cause there are TONS of us. I believe that it is an injury that occurs in 2-3 of every 1000 births. That is about the same as downs syndrome. EVeryone has heard of Downs, why not Erbs? Cause we hid it, and keep our mouths shut. I say put it out there, why not let everyone see. When you can't do something because of it, and someone asks, get the message out.
And get the message out that there ARE Drs out there and procedures that CAN help us!!!!!! This was the biggest shock to me. I felt so lied to all these years when I would talk to my Drs about it, and was told to be happy with the movement I had. How lucky I was. I couldn't believe none of them had made any effort to find out if there had been advances in medicine that could help me. This was one of the hardest things to accept.
This site has been a Godsend to me. The people and the information. It was the beginning, the spark, of a whole new outlook on life. I hope you will find it to be such an inspiration to you too.
I am sorry, I don't give out my email, just cause, well, you never know. But I will give you my AOL IM. It is kamrentx. I will be happy to chat with you there or here:)
It is so wonderful when you realize you aren't alone out there, isn't it? I know I was just shocked. I firmly believe that it is because we have all learned to hid our injury, and not talk about it. We must be proud of ourselves and our bodies. Get out there...tell everyone who will listen. Cause there are TONS of us. I believe that it is an injury that occurs in 2-3 of every 1000 births. That is about the same as downs syndrome. EVeryone has heard of Downs, why not Erbs? Cause we hid it, and keep our mouths shut. I say put it out there, why not let everyone see. When you can't do something because of it, and someone asks, get the message out.
And get the message out that there ARE Drs out there and procedures that CAN help us!!!!!! This was the biggest shock to me. I felt so lied to all these years when I would talk to my Drs about it, and was told to be happy with the movement I had. How lucky I was. I couldn't believe none of them had made any effort to find out if there had been advances in medicine that could help me. This was one of the hardest things to accept.
This site has been a Godsend to me. The people and the information. It was the beginning, the spark, of a whole new outlook on life. I hope you will find it to be such an inspiration to you too.
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: i feel alone
Hi! Melanie, My son is 11 years old and has a right TBPI. He was injured on his 4 wheeler a little over 6 months ago. We live in the U.S.
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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: i feel alone
Hi Melanie,
I'm sure by now you do know that you are not alone....there are alot of messages from parents of young children who post on the "General Message Forum" that have great information too . On all of the boards we support one another and there NEVER is a stupid question. Check out topics on Bras and bathroom questions... We are here to help one another. I am left OBPI(this is what we call Erb's Palsy now days)and just had my 66th birthday. I found this web site about 1&1/2 months ago and am learning soooo much. When I was growing up my injuries were never talked about,therefore I didn't get any information about it until 2 years ago and then I took a computer course and learned how to get information about this.
Good luck hunting...and reading all the messages. I think I remember reading someone's message from Australia in the surgery topics....
Carolyn J
I'm sure by now you do know that you are not alone....there are alot of messages from parents of young children who post on the "General Message Forum" that have great information too . On all of the boards we support one another and there NEVER is a stupid question. Check out topics on Bras and bathroom questions... We are here to help one another. I am left OBPI(this is what we call Erb's Palsy now days)and just had my 66th birthday. I found this web site about 1&1/2 months ago and am learning soooo much. When I was growing up my injuries were never talked about,therefore I didn't get any information about it until 2 years ago and then I took a computer course and learned how to get information about this.
Good luck hunting...and reading all the messages. I think I remember reading someone's message from Australia in the surgery topics....
Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
Re: i feel alone
Melanie
I live in Perth, WA and went through a similar "awakening" late last year (male 35 years old). I have found this website and the people who contribute extremely helpful.
As part of my journey, I have found a Dr in Melbourne who has experience in adult bpi secondary surgery and I will be in Melbourne next week to have operation.
From the research I have done, Drs in the US are at the forefront in this areas with many specialist clinics. Australia, as in most other areas, is lagging behind and finding a Dr that had undertaken similar work on adults has been very difficult.
Please send me an email if you want futher details.
Regards
Glen
I live in Perth, WA and went through a similar "awakening" late last year (male 35 years old). I have found this website and the people who contribute extremely helpful.
As part of my journey, I have found a Dr in Melbourne who has experience in adult bpi secondary surgery and I will be in Melbourne next week to have operation.
From the research I have done, Drs in the US are at the forefront in this areas with many specialist clinics. Australia, as in most other areas, is lagging behind and finding a Dr that had undertaken similar work on adults has been very difficult.
Please send me an email if you want futher details.
Regards
Glen
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: i feel alone
I understand as I have the same problem and it happened to me only feb this year.I have been through alot with mine and also after people who live close by.Im 42 female from tasmania australia.so im not fair away from you and i have been finding out heaps of information and still trying too.Please write if you need some advise or want to know what im trying to do or someone close to chat too....Wendy_purton@hotmail.com.or on line in yahoo as.......wendy_purton...........if you want to chat free through that site......hope to hear from you soon......regards wendy from tassie
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: i feel alone
hi glen,i would like to chat to you about the problem we all seem to have,Im in tasmania .regards wendy
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: i feel alone
I understand as I have the same problem and it happened to me only feb this year.I have been through alot with mine and also after people who live close by.Im 42 female from tasmania australia.so im not fair away from you and i have been finding out heaps of information and still trying too.Please write if you need some advise or want to know what im trying to do or someone close to chat too....Wendy_purton@hotmail.com.or on line in yahoo as.......wendy_purton...........if you want to chat free through that site......hope to hear from you soon......regards wendy from tassie
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melbenelbeny
- Posts: 4
- Joined: Sun May 30, 2004 2:07 am
Re: i feel alone
I want to say thank you to everyone who has replied to my letter. I feel so great knowing that others are going through the same things i am going through. I never thought i would ever come in contact with anyone with erbs palsy. your replys have ment a great deal to me. they have given me a boost of happiness, i no longer have to tackle life's troubles on my own, well so to speak. knowing your out there means alot to me. Thank you so much again, and i will reply to you all very soon.
Melanie
Melanie
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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: i feel alone
Melani
You are not alone anymore and will find so many kind and friendly adults both obpi/tbpi and parents of injured children who will be happy to answer your questions.
Read through this form and you will find that all of us thought we were the only one with obpi... some of us it took longer to find others
I was just 60 when I found this form and that was 4 years ago. I have learned so much and we have compared notes on so many things... it is comforting to know that others share this life path with us... and we are no longer alone...
I am waiting for Lyn to sign in she is from Au. and has a son in his 20's with OBPI... she is full of good advice and perhaps can help you with medical help in Au.
Ask any question and someone will answer and remember there are no silly questions when it comes to obpi.
Kath
You are not alone anymore and will find so many kind and friendly adults both obpi/tbpi and parents of injured children who will be happy to answer your questions.
Read through this form and you will find that all of us thought we were the only one with obpi... some of us it took longer to find others
I was just 60 when I found this form and that was 4 years ago. I have learned so much and we have compared notes on so many things... it is comforting to know that others share this life path with us... and we are no longer alone...
I am waiting for Lyn to sign in she is from Au. and has a son in his 20's with OBPI... she is full of good advice and perhaps can help you with medical help in Au.
Ask any question and someone will answer and remember there are no silly questions when it comes to obpi.
Kath
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
