United Brachial Plexus Network, Inc.

I understand that if someone from this site can get on Oprah, it can really help bring more attention to this type of injury.
An earlier post says that what's needed is very detailed pictures and/or very desciptive stories, the more heart-wrenching the better.(not those words but you get the point)
I'm all for it but what I wonder is, who is going to tell the story of the OBPI's that have lived with this for years? We're not young and cute, if anything we may be sorta' hard and bitter. How are we going to be represented?
Nobody wants to here stories about kids picking on someone to the point it becomes abusive, mentally and physically.
I guess I'm just wondering "what about us...what about the people who were alone in this Hell for years before anybody even gave crap enough to give it a name...whose going to tell our story?"

Steve,

Sooooo glad you posted. I have been wondering that myself. I sure hope that information from adults is also being collected since there really is NO better person to tell the story. You and other adults have LIVED with this injury. Actually, I think it is the OBPI adults that would be best received, versus us anger, upset, hurt, grieving mothers. People can always say us mothers are just over reacting and dealing with our own pain and loss, but you guys can't be seen that way since you have experienced it all first hand. Not that mom's stories aren't invaluable and extrememly important in this crusade of awareness. I hope that the obpi adults are also invited to participate, write letters, tell their stories, send pictures, etc. Thanks again for your post Steve. I appreciated it!

I thought I would be a good person to represent the older obpi people because I have had to cope with raising twin daughters (which is hard for non bpi people). But if you are looking for someone that has had a bad life because of the injury then I am not the person. I could probably count the number of times that blamed my injury for heartbreak on one hand. I have NEVER been angry about my "problem" or let it hold me back. I don't respond on this board very often because I am afraid I will offend some people by what I have to say. I am saddened to read posts by parents that have made bpi their mission in life and are so angry. I have never blamed anyone for my injury (even though it was clear negligence on the doctor's part). My parents never made an issue out of my arm so I didn't and I think I am a well adjusted person because of it. I have more to say but I will stop there. I hope I have not offended anyone.

Heather, It is so nice to hear positive things about this injury and that because of it you aren't necessarily doomed to a life of hell! My daughter has an injury. There is alot of anger and gloom present on here and I too have a hard time posting my feelings because I do not want to offend anyone. Everybody is at a different stage I guess on dealing - but during a parent's "radical" stage - they might get the wrong message out. I hurt for new parents that must read some posts on this board - they must think there is no hope for happiness - - which is definately not true. You can be happy and have an arm injury and the child CAN grow up and live a normal happy life if the parents let the child do that. My daughter would not want to be portrayed on a TV show as needing sympathy or "poor her" but she would like other's to understand her injury, how it happens and how it can be prevented from happening to others. She has never been angry because she has an arm injured. I wish you could represent the older OBPI's and show the audience that although life can be difficult at times it is still good. Just the facts and how the injury happened in the first place - without the anger and screaming and crying that might be expected from a parent who has made this injury their life.
Christy

Steve:
I haven’t been following this topic so my comments may have already been registered. I think it’ll be difficult to for any single program to cover all of the BPI topics adequately but here are the messages I’d want to promote:
• OBPI is preventable
• Victims need devoted parents or guardians that love them unconditionally who, together with her extended family of brothers, sisters, cousins, grandparents, friends, and neighbors, are willing to sacrifice their time, effort, and money to ensure that they achieve the maximum possible recovery.
• Recovery requires expert medical help from physicians and therapists that could last several years.
• Parents of victims need special training to perform supplemental physical therapy at home.
• Victims need understanding and encouragement from parents and teachers when they want to participate in activities that may be physically challenging to them.
• Victims require a solid education and training preferably leading to advanced college degrees that will enable them to lead a productive and successful life.
• Even with maximum possible recovery, BPI victims have difficulty with performing physical tasks such as personal hygiene, household chores, changing a diaper, holding a child, playing baseball with their children, using a computer keyboard with speed and accuracy, and using a pointer during a business presentation.
• Victims are ever mindful of overusing the unaffected arm and are concerned about what would happen if the unaffected arm were injured or affected by stroke later in life.
• Victims learn to cope with their injury and conduct their lives in spite of it but how well they cope is likely influenced by how well their parents and family do.
Just some thoughts.

John P.

Heather and CW1992 thank you, thank you. I feel sometimes that more adults with our condition would post if they didn't feel out of place with all the misery here.

First of all, never worry about offending someone here, that's gonna happen, just say what you gotta say.
I never meant to imply that I was always angry, that couldn't be farther from who I am. I just get a little tired from having to try so damn hard all the time, every day. It's like you never will measure up, like you never really fit in.
I feel like if someone can tell our story maybe, just maybe someone will take notice and the children can benefit from our stuggle.

I feel it would be very important to share our information as adult/obpi along with adult/tbpi.

We need to bring Awareness to the General Public to encourage education and research regarding this injury. But this can only happen with research and study conducted by those who care for our medical need. It would be great if such a show gave the full picture of this injury from everyone's perspective

Adult/obpi can show the diversity of our injuries and how we functioned in life with this injury. But it would be a shame to present this injury as if it robbed us of life's joy. This injury created many complications but it never owned my life. This could be done in a positive manner to get the much needed research on ways of preventing secondary injuries and premature loss of our unaffected arms.

Many of us thought we were the only ones with this injury. We had no support network nor did our parents have any help yet we managed to have full and complete lives. I would not want anyone to look at me with piety I am more than my arm.

John said it all

Kath

Hey guys, I wanted to let all of you know that there is a previous post where all pictures and stories can be shared. My brother-in-law is the inside loop to the story and he informed me that the more examples of it, the better including adults, parents, kids, teens, etc. Please send any info that you have to Ashley Williams. Her address and phone are all in that same post from not too long ago. Subject: Oprah update... Let me know if you have any questions as well and I will try to answer them as best I can!

To Steve and everyone,
I feel compelled to respond because I am the one who posted the Oprah message. For many years people besides myself have been trying to find a way into the Oprah show. I am in no way special, but just got really lucky to find Karen, who has a way in. Together we are going to do our best to make this happen. I would like to make it clear that I never in any way meant that this gathering was only for the small children. I posted the origional message on all forums, in hopes to get info from everyone. I am glad that you shared your feelings, Steve, I feel that as a mother I need you and other Adult BPI's to learn from. You are a great source of info to all parents. If we do indeed make it on the show I plan on putting together a team of speakers from all sides of the spectrum, to tell all sides of the story. Please send me any material that you would like to share. And anyone who thinks they would be a good speaker, please contact me. Thank you and I hope there are no hard feelings.
Ashley Williams