Hello,
I am wondering if anyone has any ideas of the best way to locate adults with brachial plexus injuries. Our bpi support network is predominantly children. However, I know there are adults out there, I just don't know how to best go about finding them. All the therapist I know work with children, and do you even think most adults actively are working with therapists?
We have an upcoming gathering and there is a very neat lady with obpi who will be driving quite a distance, staying at a hotel, etc., just to meet us. We have corresponded via email and I cannot wait to meet her! I don't think she has ever had the unique opportunity of meeting anyone with a bpi, much less another adult. I just think the connection and bonding is amazing, and I would really like to try to locate some other adults.
If anyone has any ideas on how people could have found you, before you eventually found these boards, please let me know.
Thanks!
Lisa in AZ.
How best to locate adults?
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- 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: How best to locate adults?
Lisa
Most adult obpi are more familiar with the term Erb's Palsy and probably would recognize it if you were to put information about your gathering in the local newspaper.
I cannot tell you what great and emotional experience it was when I met my first bpi friends Judy T, Nancy B. Going to camp and meeting Anthony and John P just made it so much better. I wish you luck and its so kind of you to try.
I was overjoyed when I found UBPN and others to talk to via the internet. They truly understand some of my feelings on things not even my mother would have understood.
I hope you find someone close by. If she is on the internet send her to this message board. We have quite a few adult/obpi posting .
Kath
Most adult obpi are more familiar with the term Erb's Palsy and probably would recognize it if you were to put information about your gathering in the local newspaper.
I cannot tell you what great and emotional experience it was when I met my first bpi friends Judy T, Nancy B. Going to camp and meeting Anthony and John P just made it so much better. I wish you luck and its so kind of you to try.
I was overjoyed when I found UBPN and others to talk to via the internet. They truly understand some of my feelings on things not even my mother would have understood.
I hope you find someone close by. If she is on the internet send her to this message board. We have quite a few adult/obpi posting .
Kath
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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Re: How best to locate adults?
Hi Kath,
Thanks so much for responding. I might have completely overlooked the whole "Erb's Palsy" idea. I almost always refer to the injury as bpi. I am so glad you shared that with me.
This wonderful lady has already found these boards. I didn't think she really posted here, but I just saw a recent post! What a small world!
Lisa
Thanks so much for responding. I might have completely overlooked the whole "Erb's Palsy" idea. I almost always refer to the injury as bpi. I am so glad you shared that with me.
This wonderful lady has already found these boards. I didn't think she really posted here, but I just saw a recent post! What a small world!
Lisa
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Re: How best to locate adults?
Hi Lisa,
I'm an adult with BP and I am more than happy to answer questions you might have. My e-mail address is tasosgirl1@aol.com
I'm an adult with BP and I am more than happy to answer questions you might have. My e-mail address is tasosgirl1@aol.com
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Re: How best to locate adults?
I am a 32 yr old with robpi. I would love to help you out with any questions you may have. When is your meeting and is it going to be in AZ? Please feel free to e mail me at any time with any questions you may have. I think its great your seeking us out and would be glad ot help again.
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Re: How best to locate adults?
Melanie & Rachel,
You know, it has always been the caring and supportive people that I have met on this journey that have allowed me to keep my sanity after watching my precious baby endure an unnecessary lifetime injury. Thanks so much for reaching out and for your willingness to help. I will be in touch soon.
Thanks again,
Lisa
You know, it has always been the caring and supportive people that I have met on this journey that have allowed me to keep my sanity after watching my precious baby endure an unnecessary lifetime injury. Thanks so much for reaching out and for your willingness to help. I will be in touch soon.
Thanks again,
Lisa
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Re: How best to locate adults?
I am a 32 year old Left OBPI, and I happened to stumble on this site to see if there was any updated information on "Erb' Palsy". The main reason more adults are not on the message board is because growing up we were told there was nothing that could be done with our injury. Therefore most adults live with that and go on with their life, and don't bother checking into new and updated medical technology. Getting the word out publically would be the best at getting the adults to see that there are options for them now-unlike there was for us growing up.
Re: How best to locate adults?
HI LISA !!!
I've just sent you an EMail to your address and hope it will help. My years of dealing with the media and State and Federal programs afforded me some insights that I am happy to share. And yes, I agree, many adults will recognize "Erb's Palsy" before they do BPI. Hope we connect soon !!! I'm anxious to help all I can since I'm on the mend from my surgery !!!
Sharon
I've just sent you an EMail to your address and hope it will help. My years of dealing with the media and State and Federal programs afforded me some insights that I am happy to share. And yes, I agree, many adults will recognize "Erb's Palsy" before they do BPI. Hope we connect soon !!! I'm anxious to help all I can since I'm on the mend from my surgery !!!
Sharon
Re: How best to locate adults?
Hi Lisa,
I used to post on this website all of the time. I have slacked off recently. However, this message really caught my attention. I am a 24 yr old lobpi. I now live in Phoenix. If there is anything I can do, let me know. You can e-mail me if you like. I just recently had the Mod Quad with Dr. Shenaq in Houston. Let me know when and where the gathering is and I will try my best to get off of work and be there for it. When and where is it going to be? Anyway talk to you soon.
Brian
BKDavenport@gmail.com
I used to post on this website all of the time. I have slacked off recently. However, this message really caught my attention. I am a 24 yr old lobpi. I now live in Phoenix. If there is anything I can do, let me know. You can e-mail me if you like. I just recently had the Mod Quad with Dr. Shenaq in Houston. Let me know when and where the gathering is and I will try my best to get off of work and be there for it. When and where is it going to be? Anyway talk to you soon.
Brian
BKDavenport@gmail.com
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Re: How best to locate adults?
Hi Brian,
I am just sooooooo excited! This was the last thing I was expecting. We would SO love to have you join us!
I sure hope your surgery went well and that you get some positive results.
I am just so happy you responded and I look forward to meeting someday! I will email you soon.
Lisa
I am just sooooooo excited! This was the last thing I was expecting. We would SO love to have you join us!
I sure hope your surgery went well and that you get some positive results.
I am just so happy you responded and I look forward to meeting someday! I will email you soon.
Lisa