New Brachial Plexus Palsy Foundation Site

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
BIGJAVSMOM
Posts: 503
Joined: Tue Apr 12, 2005 4:11 pm

Re: New Brachial Plexus Palsy Foundation Site

Post by BIGJAVSMOM »

thanks mandie.
TNT1999
Posts: 1064
Joined: Thu Nov 08, 2001 5:54 pm

Re: New Brachial Plexus Palsy Foundation Site

Post by TNT1999 »

Thanks, Peggy, for clarifying.

Thanks, Janet. I thought you brought out some good points too.

Kate, thanks for bringing that up about the false sense of security online. I was going to get into that, but my post was already so long. In our depos, they asked us about any support groups we were involved with. I'm surprised they didn't ask about any message boards, but would expect most defense attnys to do so. I know that before our trial, I wasn't just concerned about not posting about the actual birth / dr's name / hospital name, etc., but I used to worry about posting about any positive progress my daughter made for fear that it might be twisted and used against us in trial. The defense attny did end up getting copies of all my e-mail correspondence b/w our specialists b/c they asked me for them and I still had copies. They could've gotten message board posts as well had they known to ask for them. When you can't post as a guest, but have to use an alias, it certainly be easier to compile all of someone's posts. I don't know the legal rights -- if attny's can get orders to obtain message board posts, etc., but never wanted to take that chance.

BTW, for those wondering about why to be hesitant to post a phone number online -- google your own phone number and see what comes up. Also, I used to wonder, when people posted that they'd be away for surgery, vacation, etc. if there might be lurkers here looking for that info. (finding out when someone's home would be unattended). Then there's also the concern about child s** offenders knowing our home addresses. Most of us are so careful when it comes to the info. our children type onto the computer, but what about checking ourselves?? It's sad that we live in a time that we have to have these concerns and I certainly don't live my life in paranoia or anything, but I do try to practice online safety b/c sadly these are real problems in this day. I look forward to a day when we will have true peace and security. Until then,...

~Tina
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: New Brachial Plexus Palsy Foundation Site

Post by admin »

BPPF can be subpoena'd to provide listings of all the message board contents. Nothing can stop an attorney who really wants to dig to the core. And if they want, they can hire someone to sit in your neighborhood to tap into your internet connection and see everything on your computer and listen to your phone conversations. It's done everyday by people who don't want to pay for internet connections or phone service. I actually had someone follow me for two weeks to see what I did with my child. What did they learn? That I was a devoted mom and that I took my child to therapy every single day. And what would they have learned from my internet usage? That I was a devoted mom searching and searching for as much information and support as I could find.

So post intelligently. Don't talk about your case. Don't talk about your birth.

I have never seen a post here that discussed a case that was harmed by message board posts - do you know if anyone has ever been affected by this?
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Brenda333
Posts: 217
Joined: Mon Nov 18, 2002 6:59 pm
Injury Description, Date, extent, surgical intervention etc: Daughter has global palsy (c5-T1 injury) 5 surgeries at Texas Children's by Dr
Laurent, Shenaq, and Nath. 1st Surel graft 2nd Intercostal transfer 3rd Latisimus Dorsi transfer with subscapular release 4th Pec release 5th Bicep lenghtening, (which weakened her bicep, and contracture returned.) Has went through serial casting with fair results. Her arm is about a hand shorter then the other. She has limited hand function. (able to grasp) Arm stays pronated. Unable to get to neutral. Now dealing with sternoclavicular subluxation. All that being said....She is very functional. She is a very determined, strong, tenacious young woman. Now 15. She plays the trumpet, french horn, drums, guitar, and now learning piano. Has always played on a softball, and basketball team. Until recently, for fear of further injury due to the sternoclavicular subluxation. (separation of colarbone from sternum) Not sure if all this is spelled right.
--
Location: Wisconsin
Contact:

Re: New Brachial Plexus Palsy Foundation Site

Post by Brenda333 »

http://membrane.com/bpp is the Foundations old site.
Brenda
BPI Connection
http://www.freewebs.com/wbpic
katep
Posts: 1240
Joined: Mon Mar 29, 2004 3:20 pm

Re: New Brachial Plexus Palsy Foundation Site

Post by katep »

This is off-topic, but Marlyn asked about caller ID and telemarketers. I don't have caller ID, but I am on the national "don't call" list. OMG, it really really works! I used to have 3 or 4 calls a day. Now it's maybe one every three weeks, and that usually a company we already have an account with, so are somewhat legal.

I highly recommend signing up!

https://www.donotcall.gov/default.aspx

Kate
m&mmom
Posts: 1395
Joined: Sun Nov 04, 2001 9:34 am

Re: New Brachial Plexus Palsy Foundation Site

Post by m&mmom »

For all of you worried about your information on the internet, check out the following site:

www.zabasearch.com
katep
Posts: 1240
Joined: Mon Mar 29, 2004 3:20 pm

Re: New Brachial Plexus Palsy Foundation Site

Post by katep »

Well, so far I'm not showing up on zabasearch under my married name, so I must be doing something right :)

Kate
Mandie
Posts: 429
Joined: Tue May 21, 2002 4:46 pm

Re: New Brachial Plexus Palsy Foundation Site

Post by Mandie »

That site has nothing to do with you putting your info on the internet though. It has addresses for me under my birth name was WAYYY before i eve had a computer. That must search some sort of other database. They even had MY name with my mother in laws address and telephone number...i NEVER EVER lived there lol TG!!

Mandie
m&mmom
Posts: 1395
Joined: Sun Nov 04, 2001 9:34 am

Re: New Brachial Plexus Palsy Foundation Site

Post by m&mmom »

Not directly - most of us are not aware that information we think is private is actually public and made available through the internet - you may not be putting your information out there but others are.

So if you type your phone number on a website to order something and that information is sold it has the potential to be found on the internet.

This was just to show that even though you may have reservations about giving out your phone number over the internet it may already be out there.
jennyb
Posts: 1183
Joined: Fri Nov 02, 2001 5:24 pm
Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.

Re: New Brachial Plexus Palsy Foundation Site

Post by jennyb »

The only way any data can be safe is if it is entered into a secure database. If the address is prefaced https (rather than http)and there is a security padlock thingy at the bottom right of the screen, then data entered into the site is encrypted and as safe as its possible to be from hackers. If those things are not there, then don't enter data you wouldn't want in the public domain. For me, that means telephone number as mine is unlisted and as a previous poster says, I've had my backside bitten before. It's not the site you enter the data into that's the problem, it's the hackers who can get at it.
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