United Brachial Plexus Network, Inc.

Hi all you lurkers

Where did you all go?

Did I miss something?

Just a little update. I have joined with a few mothers in my area and we are in the process of forming a Rockland Support Group.

We are just at the very beginning. I have contacted local hospitals and left my name and phone number as a local contact person and have compiled a list of about 12 families who are OBPI/parents and one adult.

Just a thought for all of us who are adult/obpi - why waste all of that experience. I decided to be the contact person for my area hospital and now am trying to form a support group for my side of the Hudson River... LOL...

Just when you think its time for you to sit around and do nothing but eat Bon-Bon's and watch TV... I found another job that does not require the use of my arms and hands... just my big mouth and telephone skills.... Wish me luck....
Cold calling those families today...

Kath

Hi Kath!

I have been having computer troubles since that nasty "Klez" virus has been going around. My e-mail seems to be affected...so I haven't been posting or reading anything!
I'm glad to hear about your support group.
I think what you are doing is wonderful!
You go girl!!!
I started some PT for my back last week and found out that one of the therapists there works with children
that are OBPI a few mornings a week! I left the address of this website for her with my PT so that she can visit and pass it on to the moms.
My PT said that I wouldn't believe how many kids he's seen there with OBPI's, and just in this area!
I told him that I thought the injury was "obsolete" until I found UBPN just a year ago. He said "There are just too many...it shouldn't be happening."
Then we talked about the fact that there are no OBPI adults that she does therapy with, and also about the long term effects of having an OBPI. I really opened his eyes.!Hopefully some day we can change all that.
By the way...the scoliosis made "perfect sense" to him,
even though my doctor disagrees.
Take Care,
Stephanie

Hi Steff and All

It is amazing when you think about all we did not know about our own bodies and how we got snow jobs from those who were suppose to be "experts"

I called 14 families yesterday... with the same
"old stories" This happened to.... save the babies life -- no way of knowing this would happen ... and the best one and my personal all time favoriate lie is.... it will heal by it's self in a couple of weeks" It made me crazy... by the time I spoke to 7 mothers I wanted to have a temper tantrum but it hurts when I jump up and down and throw my self on the floor... besides I look silly...

But I contacted area support group cordinators etc and hospitals left my name and got two great offers...

One hospital offered us a meeting room! A support groups network out of a local Mental Health Facility called me and offered to do press releases and send flyers out for us once we are formed....

First full meeting my house May 22nd...

One sad note is I called and adult/obpi left my name and number I was warned she may not want to talk about it... which is ok... but offered her the opportunity to either meet with me alone or just call me back... NO call... Selfish me I would love to meet her... Support is so important now that I know more I can demand better health care and have the information right at hand... I no longer think just my arm was injured .... It really has helped me....

So off to do more work on this...

As for the virus... it is scary.... lost my last computer to one... so I do not open attachments unless Norton scans them first.... Have to be very careful...

Glad to hear your starting PT... So am I... back for another 30.... then to the hand specialist... numb palm and fingers and Arthiritis....and of course going with some girls for a Mamo party... going together and having lunch out once its over... then I have to have this fair Irish skin checked... and then to the Neurologist... Doing it all in one week... so it will be over with (except for PT) for the year... I have not been in a year and a half... so May is catch up month....LOL... and I am basically healthy imagine if I was sickly...LOL.... yuck I hate this stuff...
Now the battle begins they want to give me pain med... I won't take it....

How are all you others out there???? got the virus??? I hope not...

Kath

I'm here. Just have been busy and getting a lot of double vision problems (which I'm assured can't be connected to BPI) Yeh right. I'm giving my eyes a little rest but will be back soon,
Are we all still getting together this summer????? Pat

Hi Kath, long time no chat.

Glad to hear you're not just sitting around eating Bon Bons....LOL! Great idea the support group. As you may or may not know, I'm VP of the Chicago Brachial Plexus Injury Support Group Inc. Me and three mothers of BPI's started it up over a year ago. We're doing pretty well, and growing every month.

If there is anything I can do to help you out getting started, just let me know. After all, we Brooklynites have to stick together, eh? Email me anytime, or post here and I'll check whenever I get a chance.

Good luck and give a yell anytime!!!

Hi Kathleen I'm from Middletown NY. I curentlly go to Helen Hays every Monday 4:00. I would have a intrest in the group. How would you decribe a lurker. I check the broard 4 0r 5 times a day both at work and home. I work some 10 hour in the office its very high paced and I mostlly check only the topic that I had autherd {if i said that right} and never have time to read other ares until today i stole 2 minuts i did not really have. so whats a luker. What town are you from? Paul

Hi Paul

I am from Pearl River....
A lurker is someone who reads the boards...gets tons of information and usually is to shy to post...

Paul you go to Helen Hayes? I went there and no one knew just how to treat me in the dept. They said then never treated and adult with Erb's Palsy...
Now I got to Fairlawn New Jersey... He is both a PT/Chiropractor.... Just came back from PT...

My daughter goes there for Vistibular therapy.

You are welcome to join us...
Kath

Hi Kathleen When you say your daughter goes thair, thats where? I actuly go Helen Hayes for Vistibular. I see Wendy. Where do I join you guys. Paul