United Brachial Plexus Network, Inc.

moving up for Tracy 1972

I'm a mom of a beautiful 2 month old with a right OBPI and she also has a hip problem on her left side ( her nonBPI side) so far she has gotten 30% movement back so far we have found that her thumb is always in her fist she has weakness and also cant lift her arm over her head among other things. She sees Dr. Bae at Childrens in Boston, Dr. Melkonin in Concord and she also has Early Intervention (OT) once a week.

Moving this up for Tracy

Kath

Hello everyone, Kath moved this up for me as I am new to this site.

I just finished looking at the many topics and posts on this web-site. It is just amazing to me how many different people are affected by this injury.

Just a few days ago I came across this site after pretty much having a pity party for myself.(over it now!!!)It was a god send!!!!!

I was born (11#6oz) 32 yrs. ago with robpi(I had only known it to be "erb's palsy" until recently--in May 05 neuro. said I had "brachial plexopathy"--I had no clue what that was--when I asked him he said "well, that's just a different name for your arm injury". It just made me sooooo darn mad!!! After all the tests(mri of lower right back where knot is-never has done one of birth injury area)(emg)(x-ray), money,and time all he can come up with is something i already had been dealing with for 32 yrs. Plus put me on meds. that seem to be making me weaker and constantly fatigued. I am really going to try to get some answers from him at next appt. since I know now that I'm not crazy.

Anyway I am Tracy Schwencke, married and we live in Pleasant Hill, TN with our 2 boys(14yrs. & 6yrs.)who were also big babies(9#6oz & 8#9oz). Had a c-section first time--natural the 2nd. So I really don't buy the whole it was just a big baby theory the docs. use for this injury. I thank god that my boys did not have to go through what I did!!!! No child should!!!!!!

I have never been able to raise affected arm-can move fingers-but not stong enough to grip. I can also relate to freezing arm ,neck. I also bump into things(thought I got the clumsy gene).And now losing strength in my unaffected side. All my life I accepted all the pain, numbess, etc. as normal, BUT NOT ANYMORE..until now I never really thought about the whole compensation concept over a period of 32 years. If I(and my family) had only known what could be expected from this injury. That is why I think what UBPN is doing is GREAT!!!!!!!It is truly wonderful that parents of newly injured babies can ask adult obpi what to expect, what treatments, how to handle the emotional and social side of it.

I know have found some comfort just reading some of your stories and knowing that I am not the only one with this injury.

I look forward to keeping in touch and sharing info with all of you.


God Bless!!!
Tracy in Tennessee

I think

Hi, I am new to this site... My son who is 19 months old suffed a Left Arm BPI at Birth. He has has one surgery so far. He goes to the Dr soon to see if he needs another surgery. I am open for any support that anyone has to offer. I live in a small town and i sometimes feel that i am the only one who this has happened to. I would be glad to talk to anyone who has gone thru this before. Thank you, Liz

I just found this web site about 2 weeks ago. Tonight I've been reading the postings on this message board. I was going to read all the postings before I wrote anything, but what you said about your manicures, and manicurist, hit a nerve.
My mother was a manicurist. One would think that as my mother, she would understand my abilities and disabilities. However, there came a time when she refused to do my nails anymore (I only asked for this service occasionally). You see, I am LOBPI. I cannot turn my wrist to put my hand upward (for receiving change). I can turn my hand downward somewhat, but the movement comes from the shoulder and it is awkward. My mother complained that it was too hard for her to turn my hand and hold it there so that she could do my nails!
I am 56 years old. I've suffered the slings and arrows from strangers who had no idea that there was anything physically wrong with me, and from my classmates when I was a child and a teenager. I think what hurts the most is the memory of stuff like this, that came from my own mother.
P.S. I can also relate to the escape of reading.

Dear null,
Welcome. Keep coming back to share too. I didn't find UBPN until age 65, 2 yrs. ago & it has totally changed my life. Be sure to email nancy@ubpn.org
to get on the mailing list for
OUTREACH, UBPN's free newsletter/magazine that's just full of helpful information. FYI, I had to put a timer on to save myself from losing 3 hours & alot of sleep too when I 1st found UBPN in April of 2004. There are NO dumb questions here....
Carolyn J

Dear Null
Your not alone anymore! We are all here and we understand the many trial you have been through.

Some of us have met others with this injury and it is very healing... I still can't supinate (take my change) but at least I have others who understand and share my sick sense of humor about our injury.

Contact Nancy@ubpn.org... send her you name and address and ask for Outreach our publication. You will see others and get an education about our injury.

Welcome hope to find out your name... when your more comfortable.
Kath

Thanks for your welcome, Carolyn and Kath.

I'm all registered now.

Nancy and I live a 30 minute drive from each other. We met this past Wednesday and are planning to meet again on Tuesday. This was the first time I ever met anyone else who was OBPI. I didn't even know the term "brachial plexus" before I saw this web site. I'm sure you know what it feels like to find that you're not alone anymore.

Nancy gave me some past issues of Outreach. I haven't read them yet, but I will.

I missed both the 20/20 and Dr. Phil episodes. I don't usually watch those programs, but I would have watched those episodes if I had known about them.

Joanie

Hi Joanie,
Welcome to the boards! I am glad you found us. I think I met a relative of yours in Florida. There is a wealth of knowledge here. If you have any questions ask away. We all are constantly loosing our keys, then we look down and there in our hands.It is nice to know that you are not the only one.....Judy