VIP Question for All Adult OBPI only

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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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

VIP Question for All Adult OBPI only

Post by Kath »

Hi All

Many times adult/obpi seem to feel uncomfortable posting publicly.
Adult/OBPI have often stated, via e-mail, that it is not possible and uncomfortable to be truly open on this public form.
Please respond either way yes or no to UBPN making this a closed board for Adult/OBPI only.

If you would like this form to be open only to Adult/OBPI would you please respond via e-mail to me as soon as possible.
Please use my UBPN address even if you have my other email. It's important that I gather this information in one place.

KathM@ubpn.org

Thanks
Kath adult/robpi
Kath robpi/adult

Kathleen Mallozzi
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User avatar
richinma2005
Posts: 861
Joined: Thu Sep 29, 2005 12:00 pm
Injury Description, Date, extent, surgical intervention etc: Daughter Kailyn ROBPI, June 14, 1997.
Surgery with Dr Waters (BCH), April 1999 and in February 2012
2 more daughters, Julia (1999), Sarah(2002) born Cesarean.

Re: VIP Question for All Adult OBPI only

Post by richinma2005 »

There could be two boards for this group, a public one where they can serve as a resource, and a private one, only available to users who have permisions to see it, so this one wouldn't disappear, just a new private one would show up for those that send info and let kath now.
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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: VIP Question for All Adult OBPI only

Post by Kath »

Rich
I love that idea! This way we could post publicly to those who find UBPN after years of being alone and still share somethings privately.

Thanks so much
Kath
Kath robpi/adult

Kathleen Mallozzi
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User avatar
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:
Contact marieke

Re: VIP Question for All Adult OBPI only

Post by marieke »

I agree with Rich..

Kath, you know how Kate's board is open for most things but closed for that one section..? Do it like that maybe, that would work better than making this one completely private...

Marieke 32, LOBPI
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
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richinma2005
Posts: 861
Joined: Thu Sep 29, 2005 12:00 pm
Injury Description, Date, extent, surgical intervention etc: Daughter Kailyn ROBPI, June 14, 1997.
Surgery with Dr Waters (BCH), April 1999 and in February 2012
2 more daughters, Julia (1999), Sarah(2002) born Cesarean.

Re: VIP Question for All Adult OBPI only

Post by richinma2005 »

Kath and Mareke. Check it out and tell me if this is what you were thinking of. Only you two were added thus far. try and see it when you are logged out, you cannot right?
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Judy-T
Posts: 557
Joined: Fri Nov 02, 2001 11:59 am
Injury Description, Date, extent, surgical intervention etc: Right arm OBPI One surgery at age 40 Ulnar nerve retransposition
Location: Florida

Re: VIP Question for All Adult OBPI only

Post by Judy-T »

Rich, I love this idea. Can I get access...Judy
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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:
Contact marieke

Re: VIP Question for All Adult OBPI only

Post by marieke »

Yup, exactly. Working well. If I log out, it disappears.

Marieke 32 LOBPI
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.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: VIP Question for All Adult OBPI only

Post by Carolyn J »

I vote with Rich,Kath,Marieke & Judy T. for 2 Boards for Adult OBPI's. I cannot figure out how to get to the "trial"Board...

2 Boards please...I love questions from Moms,teens and new Adults With who find us...

HUGS to all,
Carolyn J
Carolyn J
Adult LOBPI
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Joanie
Posts: 499
Joined: Sat Aug 13, 2005 9:03 am

Re: VIP Question for All Adult OBPI only

Post by Joanie »

Marieke,

I don't know what you are talking about when you say, "Kate's board." Please explain.

Thank you,

Joanie
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Joanie
Posts: 499
Joined: Sat Aug 13, 2005 9:03 am

Re: VIP Question for All Adult OBPI only

Post by Joanie »

Rich,

Sounds like a good idea to me. I have long bemoaned the fact that we adult OBPI's do not have a private forum. I don't know what I would say on such a forum that would be different from what I say here, but I certainly don't know what to say to a parent who wants to know exactly what their child's life will be like with this injury. Everyone's life is different - with or without an injury. Everyone's injury is different. I'm not G-d. I can't pretend to know what someone else's life will be like. I'm tired of all these parents who seem to think that we only exist to be used as a resource for them. Well, that's my rant for now.

Joanie
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