United Brachial Plexus Network, Inc. • So I'm not alone?????
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Re: So I'm not alone?????

Posted: Fri Mar 02, 2007 10:07 pm
by Mare
Hi Nila
I'm Mare and my son Frankie is 14 and has a left BPI he just had the mod quad with Dr Nath this past Nov, The best way to find out about the mod quad surgery and learn about Dr Nath is to go to his web site drnath@drnathmedical.com it will answer most of your questions and you can also email him and he will get back to you usually the next day. Hope this helps

Re: So I'm not alone?????

Posted: Sat Mar 03, 2007 12:17 am
by Brittany
Hi Nila,
I am also very new to this. I just joined this site about a week ago so I would like to welcome you here. The people here all seem so wonderful and I felt kind of awkward coming here but now that im here i feel soo welcome!!!! I hope this site gives you the same feeling. I would love to keep seeing your questions because im sure i have a lot of the same ones.
Welcome!!!
Brittany, age 20 (LOBPI)

Re: So I'm not alone?????

Posted: Sat Mar 03, 2007 8:50 am
by Joanie
Welcome Nila,

I can't help you with the questions that you asked, but I wanted to welcome you to the UBPN message boards. No, you are not alone anymore. Isn't that a wonderful feeling?

I understand that you didn't want to ask all your questions at one time, but feel free to ask any questions you have.

Joanie, 58 years old, LOBPI (Left Obstetrical Brachial Plexus Injured)

Re: So I'm not alone?????

Posted: Sat Mar 03, 2007 10:02 am
by kamren
Isn't knowing you are not alone wonderful?!

I remember when I first found this site about 3 years ago now. Like most, I was told it was very rare. What a shock. I know I cried:)

I know there are those here who will be able to answer your questions much better than I can. But I wanted to welcome you here

Kimberly
LOBPI, 39


Message was edited by: kamren

Re: So I'm not alone?????

Posted: Sat Mar 03, 2007 12:45 pm
by Carolyn J
Hello Nila,
I want to welcome you too. I am 68 1/2 yrs. old and I lived 65 yrs before finding this site and a name for what I have and finding out I wasn't alone with this injury. Our UBPN Family is wonderful. There is sooo very much love, support and information here. I, myself have learned alot from Parents on the "General Message Board" and alot from teens. I've cried many times the 1st time I found this site and a name for what I've lived with other that "birth defect". I am amazed at what can be done to allieviate the pain and discomfort we live with. IT is wonderful to learn something new or helpful every time I read or post. Sharing and venting here to people who understand is sooo amazing and very healing too.

Nila, there ARE NO DUMB QUESTIONS here & you are welcome on ANY of the message Boards.Also there is a "Search Forum" Link at the top of each Forum page..just type a question there too and ALL topic threads containing your words will come up.....But ask away, we all learn from every post. :)

HUgs all around,
Carolyn J
Adult LOBPI

Re: So I'm not alone?????

Posted: Mon Mar 05, 2007 12:58 pm
by Kath
Hi Nila
It is so amazing when we realize we are not alone with a very rare injury that no one understands. In fact we don't truly understand because of the lack of information out in there for us. I found UBPN about a week after my 60th Birthday. I was suffering with my "unaffected arm" and was afraid I was loosing use of it. I began to search for Erb's Palsy and found out there was another more important name I did not know.
Brachial Plexus injury popped up on my computer and the rest is history.

I have learned so much and also went through a grieving process. For the first time I grieved my losses and then celebrated my gains. We may loose the ability to do something's but I believe we make up for it in other ways. I think most obpi are forced to use the creative side of their brains and to become great problem solvers.

I remember posting on the message board about holding things in my hand and then looking for them and forgetting they were there. I was so amazed when I found out others did exactly the same thing and it's due to the brain disconnect to my arm... I loved knowing it was normal for me as a robpi person to forget I had somethin in my hand. That was the first silly question I asked and found it was not a silly question. As Carolyn said "there are no silly questions."
There are no studies on this injury and how it impacts our lives and we need to help each other.

I have just recently moved and been off line for a couple of weeks for the first time since 1999 and missed posting welcomes to many new people.

So I want to welcome both Nila and Brittany to the Boards.
Please read some of the old posts as well as asking many questions it really helps everyone when you post questions. Sometimes people are afraid to post for fear of looking foolish... Trust me there are no foolish questions and you will have lot's of support here.

KathM aka Kathleen M
KathM@ubpn.org
Member BOD of UBPN

Re: So I'm not alone?????

Posted: Mon Apr 02, 2007 11:26 am
by Brandy524
I found this site a few years ago myself and until then I had no idea what was wrong with me. I'm 26 with ROBPI. I haven't been on here in a long time (had two babies since the last time, been very busy). But I was so relieved to find out what it was and that I wasn't the only one with this problem.

Re: So I'm not alone?????

Posted: Mon Apr 02, 2007 11:31 am
by Brandy524
Sorry, meant to say LOBPI.

Re: So I'm not alone?????

Posted: Mon Apr 02, 2007 2:07 pm
by Kath
Welcome BACK Brandy

I see you have been very busy since last you posted.
How are you doing with the children?

Congratulations!

I have three children all grown and 5 grandchildren.
I know how much of a toll the lifting takes on our arms and back. I hope you are taking care not to overdue.

Glad you can post again.
Kath adult/robpi

Re: So I'm not alone?????

Posted: Tue Apr 03, 2007 6:17 pm
by Brandy524
Thanks Kath! I'm doing okay. It's soooo hard handling two kids! It's very difficult on my arm. But I'm loving being a mommy. There's nothing like it.