United Brachial Plexus Network, Inc.

Attention teen and adult TBPI,
The awareness committee is in the process of creating and awareness brochure that will be easily accessible online so that anyone can print them and hand them out in an attemp to slow/stop the occurance of this injury and create awareness about challenges that are faced.

What we need from you all as injured people is what you would like to see in an awareness brochure to enlighten those around you. What information would you like to have available to hand out? Anything you can add would be greatly appreciated!

The goal is to have these brochures created and in pdf format online before awareness week so that they can be used during awareness week.

Thank you in advance for any help you can provide!
Amy
UBPN BOD Awareness Committee Chair

Alright guys ... here is your chance to be heard, again!

What do we want others to know? What things do we want them to be aware of?

I want people to know this injury changes your life, its NOT just an arm!

This is for the general public but also for those who are injured and their families as well as medical professionals.

Reply here or email AMY@ubpn.org so that we can get this moving!

Thanks for the support!

Help me out here, I have only a slightt idea of what you need others to know but they relate to me having an OBPI. I need TBPI imput to make this happen! Lets get the word out and stop this injury from happening to others!
Thanks,
Amy

I don't think prevention is really a factor in tbpi. Altho I would like to see kids banned from using ATV's!
A few years back when Liz and myself helped with UBPN awareness we did produce a brochure with tbpi info in it, does Ubpn not still have that? But, from a personal point of view, the informal survey we did for the UK tbpi website was a lot more useful for injured people themselves. If you look through the posts on this board the questions are always the same, will the pain ever stop, will my arm recover, are you depressed etc etc,
Only if it actually happens to YOU can you know how utterly overwhelmingly terrifying it is to suddenly go from able bodied to severely disabled with the added burden of severe pain. The injured people in tbpi are almost always young adults. Most of us didn't talk to our parents, parents or friends about the fears we had or about the difficulty in adjusting to what looks like a bleak life stretching out in front of us. Most of us got our injury in traumatic circumstances such as auto accidents, falls, gunshot, knife wound. There is often PTSD to deal with and this is often ignored. Some people become suicidal. Nobody wants to talk about it. The focus from families, doctors, friends, is fixing the arm. That's not always a healthy focus, especially as the outlook in severe tbpi cases is often bleak in terms of arm recovery -not in terms of recovery generally tho, I have one working muscle in my whole right arm but consider myself fully recovered.
Well I've blabbered on long enough. Check out the faq's on the tbpi UK homepage. http://www.tbpi-group.org/ I can't link direct to the faq's but the link is about a third of the way down the left hand side. We got the info by working out which info was most frequently requested by newly injured people, then polled on the message board for answers. The result is a range of the answers given for each question and I think it works well.
I'd be happy to help if you want to do this on UBPN.
JenNZ

My husband says:

1. Don't be afraid to ask for a 2nd opinion

2. A TBPI is not the end of your life, just the beginning of a new way of life. If your remain positive and goal oriented you can accomplish anything you set your mind to.

3. Stay involved in your own care. Ask questions, challenge your doc.. if they are offended by this then it's time for a new doc.

Glynn
LTBPI (October 2006)

I second "Ask for a second opinion" and third, and fourth if necessary. Also to ask any care giver how many of these injuries they have "treated" We spoke with two doctors that gave us all sorts of treatment options they could offer---all that they had read about, but never performed.

I also think (as already mentioned) the emotional pain that can accompany this injury cannot be stressed enough. For us (my husband has the injury, but I know he would agree with me) that was absolutely the most difficult part of the injury. He can now do anything he used to be able to do, just adapted....but the dark period in the first 6 months following the injury was UNBELIEVABLY difficult. Of course, he bears the brunt of this...but the effect of the depression on our entire family was very, very evident.

Jen, I think you hit the nail on the head. I just couldnt put it all together like you did. Thanks for doing that. I dont think there can be any kind of awareness to prevent TBPI from happening either. Its traumatic, traumatic all the way around.

I think the public and the medical community should be made more aware of this type of injury and that there are specialists who deal specifically with tbpis. When my daughter was injured, I was the one to get on the internet and research the injury and asked our neurosurgeon about outside help. That's how we got to Mayo. I don't know if we would have had that opportunity had I not said something.

Your statement on the 6 month depression stopped me cold. Glynn experienced the same dark period and I thought it was the heavy medication. Hind sight.....

I agree it's traumatic so not always preventable. I do still think that noting the most frequent causes could be good. Where to seek the best treatment, that was hard for us. If I hadn't found this sight we would still be out there floundering around. Not all drs are willing to admit that they don't know enough about the injury to help. So listing the specialists in the field would give newly injured a jumpstart in the right direction. I like the FAQ like Jenny mentioned. And of course listing this sight for all the support and knowledge here.
Sue