So I'm not alone?????

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
Mare
Posts: 708
Joined: Mon Mar 10, 2003 5:30 pm

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

Post 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
Brittany
Posts: 11
Joined: Fri Feb 23, 2007 5:23 pm

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

Post 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)
Joanie
Posts: 499
Joined: Sat Aug 13, 2005 9:03 am

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

Post 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)
kamren
Posts: 262
Joined: Sun Feb 15, 2004 7:19 am

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

Post 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
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

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

Post 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
Carolyn J
Adult LOBPI
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

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

Post 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
Kath robpi/adult

Kathleen Mallozzi
Brandy524
Posts: 22
Joined: Thu Apr 15, 2004 6:03 pm

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

Post 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.
Brandy524
Posts: 22
Joined: Thu Apr 15, 2004 6:03 pm

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

Post by Brandy524 »

Sorry, meant to say LOBPI.
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

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

Post 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
Kath robpi/adult

Kathleen Mallozzi
Brandy524
Posts: 22
Joined: Thu Apr 15, 2004 6:03 pm

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

Post 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.
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