United Brachial Plexus Network, Inc.

Just reading a few posts here and there really makes me smile and grateful to you ALL and to this board. Maybe I didn't need to start a whole new thread to say "Thank You," but I feel as though it is genuinely fitting.

I hope everyone here smiles at least once every time they read a reply on this board. I know I do.

Thanks.

-Johnny

Thank YOU for telling us, Johnny, sometimes we feel like we are rambling too too much.
Carolyn J
LOBPI/70

When I found this site, I felt the same way Johnny. I couldn't belive I'd found this whole community of people that understood my situation and had been there too!

A sense of humor helps with any difficulty we face and our injuries are just another difficulty. If you don't laugh you'll cry and who wants to do that all the time?!? After 40 years, I learned to stop crying and start laughing about THIS too. (Yeah, I'm a pretty slow learner!)

Lisa
41 y/o LOPBI

i really feel waht you are saying. when i first swa this site almost 2 months ago i think i really cried reading the different posts and some arwe also answering with my posts. hope to meet you all and thank you for alweays being there. ( :. goodluck to all godbless. lets chat sometime. (:

kristoffer
20 y/o

Kristoffer -

I know exactly what you mean! I cried too when I found UBPN. I couldn't believe there were people that all I had to tell was "I have Erb's palsy" and they knew everything! (Not having to tell the whole "Well, when I was born...." story was such a relief.)

That they had been there too was so emotionally overwhelming for me. I had gotten so tired of people saying "Well, what about therapy?" or "You just need to try harder!" when I say my range of motion is severely limited. They just don't get it. I used to feel lazy or like I was a lesser person because I couldn't do what other thought I should do.

One of my favorite things to say now when people make suggestions about how I can "overcome" my OBPI is "You know, no matter how hard I try, the missing nerve signals in my arm won't magically regenerate. No amount of exercise will change the deformity in the bones of my shoulder that were pulled forward as I grew because my muscles didn't have those signals. Asking me to do things by 'trying harder' is the same as my asking you to bend your knee backward simply because you want to or regrow an amputated limb just by trying harder." That gives them a better understanding of WHY I can't do what they think I'm just too lazy to accomplish.

Likewise, this is the place where I learned to not be ashamed of my inability to do things like other people and not to feel lazy about asking people to do things for me that I used to just do without thinking but that ended up stressing and overworking my good arm. (I have decided that preserving my mobility and strength is the MOST important in my life now!)I spent most of my life being damned independent and doing everything for myself no matter what it took despite having a "crippled" arm. At 37, I started to feel the results of that. Now, I step back and say "I COULD do that, but what will it do to my 'good' shoulder in the long term?"

ANY time that you are trying to cope with something - directly caused my your BPI or not - remember that EVERYONE here understands and most of us have probably experienced it. Don't think twice about starting a thread and saying "What did you do when....." I am sure you will have more responses than you know what to do with! That is why all of us are here!

Lisa
41/LOBPI

great post lisa. (:.

Hi all. I love what you wrote, Lisa. I'm 42 and have OBPI and just discovered this site! Talk about overuse of my good arm. I'm a teaching assistant and am finding that I can't help my student much anymore because my left (the normal one) is getting too sore, also my left hand is in pain. What am I going to do for money if I can't work anymore? Do any of you find that you are in more pain as you get older. Not only in my affected arm but my BACK and both SHOULDERS!! Anyway, I'm so happy to have found you all and can't wait to chat some more.
Kim

WELCOME, Kim!! I am glad you found us here. there is no such thing as a dumb question

Yes, yes Please start taking care of your "good" arm. Over-use takes a very big toll as you age, so start now...
FYI, there is a topic thread on this Forum about over-use. Just type a word or phrase in the "Search Forum" box/link at the top of any page and all posts on that subject will come up for you.

When I found a name and this site in 2004, I stopped using a vacuum immediately to save my good arm! I squeeze out $$ for a housecleaner on just a fixed income and it certainly is worth it. there is much much more tips on "saving" your good arm so just keep surfing the Boards!!

Carolyn J
LOBPI/70

Carolyn -

I never would've thought that vacuuming would be a problem, but that make soooo much sense when I think about it. No more vacuuming for me!

Kim -

Have you tried going to a chiropractor? Find one who does A.R.T. if there is one in your area. (I have a looooong post on the boards about my experiences with A.R.T. and how it really changed my life! You can find it for all the details.) Your muscles are likely "out of line" because of the injury and that pulls your spine out of line as well. My shoulder pain and back spasms came from an impingement in my shoulder - caused by overuse of my "good" arm - and A.R.T. has eliminated it! I tried PT, massage therapy, and tons of muscle relaxers, but none of them addressed the real problem... the A.R.T. did that! Now, I am working with a physical therapist (who is also an MD) and I am strengthening the back/shoulder muscles that contributed to the impingement to prevent it from happening again. For the first time in years, I'm pain free on my "good" side!

My chiro has started working some on my overdeveloped biceps in my "bad" arm too and that with some stretches from the PT/MD is actually loosing it some. I have greater assisted range of motion now and my elbow is a little straighter, allowing my arm to "hang" more naturally when at rest.

If insurance doesn't cover chiro, most docs have reasonable cash rates. It is certainly worth the money to be able to keep moving!

Good luck and let me know if you try it!

Lisa
41/LOBPI