United Brachial Plexus Network, Inc.

First off, I can't believe this many people have the same disability as me. As I read before, it is a God-send. My shoulder is very sloped and the shoulder blade protrudes pretty bad. From what I was told, the only birth complication was that the umbilcal cord wrapped around my neck and I was blue. How could this cause my shoulder deformity? Also, my nerves and muscle on my BPI side are small and the tissue is "stringy",all the way down. Sometimes I lose concentration in college and I literally cannot stand to hold my pencil or read at a book... I think my brain on the left side(my BP side) has BPI too. Does anyone have advice or can relate?
Luke

Hi Luke

I don't have any advise, but I can relate to your situation somewhat. I have actually had 3 different dr tell me that there was also some brain damage and 1 other one said there was damage to the opcipal (sp) that was the reason for sporadic sezures that I had called dizzy spells (started after I turned 30)

A cat scan showed one lobe of the brain was smaller. Which answered a question as to why I was never creative with arts and crafts and the biggie is/was with abstract drawings. I can't reproduce drawings when asked to even when they leave the "picture" out for me to look at. I guess that's why the brain compensated and I have been good at numbers, book work etc.

Now that I'm older, it was explained to me that the older you get, the brain does not reporduce cells as it did when you were younger. I "guess" that's why I now have such a problem remembering.

Another odd thing that happens to me more and more is that I cannot say what I can see in my mind, can't find the word(s) to go with the picture, as if there is some kind of interuption in the communication with brain and speaking? But, then too, there are many times that the brain does not communicate with my erbs arm and there is a delay between thought and movement.

Just another perk of having erbs "I guess"
I have never bothered asking this question to others as noone ever mentioned it before about any brain damage and what they were going thru. Drs wanted to do a mri but I'm extremely closterfobic (sp) and will not get in that small space...

Like I said, I have no advise but I can relate to some of the happenings you are going thru. (not that it helps you lol)
One thing I did learn along the way was that meditation has helped a little as I can quiet my mind down and just have quiet time. It works less and less as I get older for it's hard to quiet the mind.

I hope you get other responses as I too, will be interested in what others have to say and how it might affect them
Take care Sharon

There is and interesting post on the General Board.
I am sure some of us can relate to it.
I know I had problems in school and hated some of my classrooms...
Now I realize I hated the seat I had to sit in and where I was placed in the room.

Sharon I just can't spell and never could.
I sometimes can see a word in my mind and know how to pronounce it but will pronounce it wrong... that drives me crazy.
I don't do it too often but often enough that my way of compensating was the same as with spelling.
I would substitute a word I was comfortable with pronouncing or spelling.

Luke and Sharon how many times are you looking for things and find them in your hand?

How many times have you walked around with things in your hand and, until someone comments on it, you are not even aware of having something in your hand?

Read this thread on Sensory Integration you may see some of the children's behavior in your past...
I know I do!

http://ubpn.org/messageboard/thread ... read=13447

Kath ( adult/robpi)

Thank you Sharon and Kath,
Almost everyday I have an object in my hand that
I am looking for. Also, I have LOBPI so I am bad at Math. I have many Tip of tougue experiences
I have many ideas and interesting things to say
but I never could get them out of my mouth.
I always felt I was a "hair" away from being really
smart. I have been very bitter about all this BPI stuff, but atleast now I know I am not just a bit
slow or crazy, which is what all my friends and I have thought. Thank you lots for all the help Sharon and Kath

Luke, 23, LOBPI

Just curious, but why would having LOBPI mean you are bad at Math???
"Also, I have LOBPI so I am bad at Math" (quoted form your post)
I too have LOBPI and am very good at science and math.
Not all people with BPI have problems with sensory or learning, that can be totaly unrelated. I had some problems as a child, but that was found to be due to my being borm 3 months premature. Some BPI's have problems due to brain injuries suffered from lack of oxygen at birth, not caused by the BPI but from a secondary problem. Brachial plexus nerves are periferal nerves, not stemming from the brain, but from the spine. It's difficult to explain, but it is a seperate wiring. Problems occuring in the brain can occur concurently though, making like that much more complicated.
marieke

Marieke
As you know the extent of each persons injury is very different.
The healing is different and also the total impact on our body is different.
There are no long range studies nor do they fully understand the impact of this injury.
Some of us may have had oxygen supply cut of... to me it is part of the injury.
If someone has a mild injury they may not have any of the problems that some others do.

Research is needed to truly understand the full extent of this injury.
Some of us have more serious injuries and the entire side of our body is affected.
There is also the loss of the dominate hand and that creates problems because the brain is hard wired for left/right handiness.
Switching that dominance can create many learning disabilities. This is a direct result of being bpi.
You may not have lost your dominate hand.
Those who have lost their dominate hand will have more problems.

I have Horner's syndrome as part of my birth injury.
My diaphragm is spastic and now it is considered post polio because the muscles are tired.
Horner's syndrome affects not only our eyes but causes partial facial paralyis.

We cannot fully compare one persons injury or recovery with another's.
But, we can compare notes on how our personal injury impacts our lives.

The medical community, have a very long way to go when it comes to studying this injury.
When my daughter was in nursing school I began to search her books for information.
I was stunned at how far behind the medical community and schools are, when it come to birth related brachial plexus injuries.
It has been my experience that most doctors still think it is just an arm and don't realize that some injuries are more serious than others.

Kath (adult/robpi)

I was referring to the people with secondary problems.
Sometimes i can dignose myself but I hope you understand that many funny things have happened to me the last few years, and now I am wondering how much BPI has to do with it. I am just OK at Math but my mind sometimes just seems to skip I slur words ETC

One more thing I fergot
I have all the same problems mentioned in Sharons' previous post. I should rephrase "I have LOBPI so I am bad at math" to "I have LOBPI and I am bad at math"

Luke (adult/LOBPI)

Gee Kath,

It's nice of you to put "more" on my plate. In school I was what they now call a social butterfly. I was never in my seat and talked a lot (which by the way I still do if you have not noticed) my teacher which I had for two years in a row in grade school actually put talking on my report card and graded me. Called me Gabby Hays.
Never bothered me.

Sunglasses, I wear them all year round. I can't stand flashing liglhts, loud noises (now that I'm losing my hearing on my erbs side, that's not to much of a biggie now.) LOL. If I remember right my brain scan showed right hemisipheric damage, my erbs is on the left, so I was good with numbers, english etc. It's the older I get, the worse it is about not being able to speak the words I'm seeing in my mind.

Occasionally, I will hold things in my hand but so far that's not a problem. The problem is that my arm and hand are not responsive quick enough and I drop things a lot, or burn my arm on the cookie sheet. But then it only burns for about 30 seconds and then I don't feel it unless I touch it. I would not try that with my right arm, that would be too painful LOL.

I had to save the post you referred to as today is not a good day to retain information. As I get older, I notice I cannot retain new things that I try and learn. I have to take notes and refer back to them. Good thing I learned to type in high school, I couldn't do it now. Too slow of a response time. They tried to get me to learn how to type with one hand HA. That was a sight LOL

As I have been told, even an mri cannot pinpoint all the injuries to all the nerves as some nerves are so small, but are necessary and imprtant and in fact some nerves, the medical field doesn't know what they are for.

I guess, too, that when I see kids now days acting like that, I figure diet has a big part of their actions.

Before I forget, do any of you ever transpose numbers and letters and not notice it. One better, at times I can say a sentence totally out sinc, something I can't do if I try. People just kind of look at me funny and then I know it came out backwards.

I wonder too, as we age, if the scar tissue has some effect on the different nerves and muscles it comes in contact with. So many question, too few answers and practacially no way to compensate anymore. Sharon
Have a Happy Turkey Day Everyone

Oh my gosh-- I never thought these weird things could have anything to do with Erbs. I am a good speller, but I say things differently then I am thinking sometimes, and feel I lose the words as they come out of my mouth. Also, I can't put a puzzle together. not even a childrens puzzle. The pieces never made sense to me. I also have a hard time with boxes and putting any kind of design together. I am ok at regular math. never got the concept of geometry--but I can get the right answer to a complicated math problem--just have no idea how I got the answer--I never understood the steps--just had kind of a mind flash and the right answer was there. Teachers don't like that. Lately, I've been forgetting or brain freezing when I want to get out a specific thought. Thought it was stress and getting older.
Just another Erb thing. Will it ever end? And will a dr. ever listen!