How did you contribute?

Tell us your Awareness efforts!
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cdmurfee
Posts: 113
Joined: Mon Feb 23, 2009 2:12 am

How did you contribute?

Post by cdmurfee »

Hey everyone!

I'm just curious for all the stories about spreading awareness that we all must have accomplished last week!

-Chris LOBPI/25
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: How did you contribute?

Post by Carolyn J »

I spread UBPN's Information AND My Life's experiences information on FB all 7 days;I SENT EMAILS to all my Non-BPI addresses from ALL my email services address books and verbally to everyone I talked to last a;ll 7 days. I also spread that "new Mom-to-be" information about delivry positgion to all new Moms I could think of and on "Circle of Mothers" pages on Facebook.There was NO response to "Letter of Request" to our WA Gov. Gregroire....

I challenged Gayle, "Brandonsmom" to do 24 hrs of NOT using her dominate arm/Hand.

Carolyn J
Carolyn J
Adult LOBPI
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brandonsmom
Posts: 1401
Joined: Mon Nov 22, 2004 4:43 pm

Re: How did you contribute?

Post by brandonsmom »

I took Carolyn's Dare to "ONE" arm myself. I did it for six hours and I took away my dominant arm. IT was hard, hard, hard, could not do it any longer, my back and shoulders ached and I was exausted. That was a true challenge...I See from a different light my son's injury. I also change my facebook status to BPI awareness, every day at least once. I think my friends were getting annoyed.LOL. except for Kath and Carolyn...and my other facebook BPI friends !!!
GAYLE mom to Brandon ROBPI
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hope16_05
Posts: 1670
Joined: Tue Jul 01, 2003 11:33 am
Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
Location: Minnesota
Contact:

Re: How did you contribute?

Post by hope16_05 »

I challenged over 60 people to take the one arm challenge and not one person replied to me! I did however send the prevention info and how these injuries occur vidoes to the ssame 60 people and I know at least one person watched the videos! She is now prepared to ask questions before getting pregnant!

Amy 22 years old ROBPI from MN
Amy 28 years old ROBPI from MN
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: How did you contribute?

Post by Kath »

I changed my Facebook status every day with a new message on preventions and requesting they visit UBPN. I also changed my profile picture every day putting up photos of me as a child with my arm sticking out. I handed new magnets to family members with UBPN on it.

I spoke to the nurses and other patients at Cardiac Rehap about prevention. As a result I was invited to speak at the hospitals Auxiliary meeting. We shall see about that one....

I wear my silver ribbon on my right side all the time not just during Awareness.

I admit I have a tendency to spread the word all year long to anyone who will listen. I try never to miss an opportunity to spread Awareness about obpi and also possible ways of getting a TBPI.

This is a great topic, thanks Chris.

Kath robpi/adult
Kath robpi/adult

Kathleen Mallozzi
User avatar
veggiebug
Posts: 257
Joined: Wed Mar 03, 2004 8:47 pm
Injury Description, Date, extent, surgical intervention etc: I weighed 11 lbs. 4 oz. when I was born.
I was delivered by forceps which resulted in my ROBPI.
I've never had any surgical intervention.
Location: Williamsport PA

Re: How did you contribute?

Post by veggiebug »

I too changed my FB status. I shared some images I made to help with catching peoples attention on FB, which worked well because we were passing images back and forth all week which was very nice.
I sent out some letters, to various medical places. One was to the ortho I went to that wanted to do surgery on my hand with no idea what was going on, and I had to tell him all about the no BP or needles in that arm. And to the Family planning group, and the disability service groups. Though you'd expect them to know more about the disability they don't.
Master DIVER TOM
Posts: 759
Joined: Tue May 05, 2009 11:51 am

Re: How did you contribute?

Post by Master DIVER TOM »

I wonder how many war veterns get the erbs injury. ERBS is the worse getting it latter in life ,I think but I was born with erbs injury I think reaching out to the ones injuried latter in life is the best thing I can do to help.

Tom
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: How did you contribute?

Post by Kath »

I want to thank Traci for her Superhero images...

She even made a Superhero for me... a girl with red hair... That was great for people to see because she made both male and female superheros with one arm all the way up and the other like most of us...


Tom many Vets had this injury and the most famous is Sen. Bob Dole.

Kath robpi/adult
Kath robpi/adult

Kathleen Mallozzi
User avatar
cdmurfee
Posts: 113
Joined: Mon Feb 23, 2009 2:12 am

Re: How did you contribute?

Post by cdmurfee »

That is awesome, everyone! I wrote an educational email, and sent to everyone on my mailing list, plus all my facebook friends. You can only send to so many FB friends at once, so that took a LONG time to copy and paste, but I know some of my friends were really appreciative to learn about BPI.

I'm with you Kath, in that this is important enough to me that there's no sense in just trying to spread awareness during a single week... it's gotta be all yera long! I've also started moving forward with the steps I need to take to join the paralympic cycling team. I started riding with, and just joined a local team. That's been neat because they all ask why I am riding, and it's the perfect forum to tell them what BPI is. The number one reaction I get is surprise when I tell them I'm going for te paralympics, and then I explain the BPI, and they say they would have never guessed. Even if I don't make the team, I am getting word out, so it's going to be a positive no matter what the outcome.

-Chris 25/LOBPI
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