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.
Amy,
About Dancing...You'd be amazed to find out the truth-- that no one is really watching you that close when you are on the dance floor. They are all about their own "moves"...Especialy now days with the kind of "disconected" dancing done now. Since you do like to dance try going to kareoke someplace where no one knows you and try it just once and see if you feel the same way, then leave the place if you are uncomfortable. You don't have to finish a dance/song either just leave the dance floor and the place if you want too. I know it may take time to change that "odd feeling". but it has been done.
Dancing is too much fun (and excercise too) not to try it just once. (or maybe you have??-sorry)
im in the same boat as you, I grew up thinking I was completely normal if there is such a thing, Now as I am older in my twenties i have realized I am not normal, and it bothers me, and it has taken a toll on me. Now i'm at my breaking point. I have let my injury run my life for the past 2 or 3 years, and i am ready for it to stop. I wish I knew how to cope with it. The thing that bothers me the most is the visualization of it.
> im in the same boat as you, I grew up thinking I was
> completely normal if there is such a thing, Now as I
> am older in my twenties i have realized I am not
> normal, and it bothers me, and it has taken a toll on
> me. Now i'm at my breaking point. I have let my
> injury run my life for the past 2 or 3 years, and i
> am ready for it to stop. I wish I knew how to cope
> with it. The thing that bothers me the most is the
> visualization of it.
I hear you man loud and clear, I read your post on the other forum to and I feel the same way. Parents raised me normal I never knew it would be a problem it came out of nowhere.
Yes the visualization is the worst man I'll be in a good mood and I'll catch my reflection in a window pane and that just pisses me off so much. Also I'm a big guy and would have big broad shoulders but I got one big arm and one small arm drives me insane. You know I'm ok alot of the time then it just gets to me everytime. It seems I just can't get over it.
Having someone to talk to who knows whats going on helps alot, its hard for me sometimes because I don't talk about it much. Give me a message back man, take it easy.
Injury Description, Date, extent, surgical intervention etc: LOBPI, had surgery when I was 9- they moved muscles and tendons from one side of my arm to the other side. I can lift my arm to about my eye level, can't straigten it all the way and can't completely supinate my wrist.
I live in rhode island, I went to a guy named Dr. Erlich at the Rhode Island Hospital, he's an orthopedic surgeon, but he saw me and a few other BPI patients. I know that's closer to Ontario, so I thought I'd throw that researh topic out there!
~Mel
Yeah it is great talking to someone about it! i talk with Cody from Texas, it has helped me so much its not even funny. And its like well hell, maybe its not so bad, watching him and seeing what he can do and nothing stops him, it is very inspiring and motivating! I have lived my entire life like this, he has lived 4 years.
My arm is actually fat lol. I am very petite body wise and my left arm has quite a bit of muscle, but my right arm (OPBI) is fat lol. I guess what bothers me the most is the fact that it is shorter and the scaring.
It is just weird starting to use your arm more and more. I have always played golf and I have always rode horses. Since I have been sharing stories with Cody and what not I have noticed that I am not as self conscious and all of my friends around me said they have noticed the same thing. My golf game has gotten better lol, and my riding as far as hand usage has gotten better. I have ridden my entire life but i just started riding 2 handed 2 years ago, and I have noticed over the past 3 weeks or so, I am starting to really just say the hell with it and use my right arm much much more, and all be damn it works lol
Injury Description, Date, extent, surgical intervention etc: I weighed 11 lbs. 4 oz. when I was born. I was delivered by forceps which resulted in my ROBPI. I've never had any surgical intervention.
Let me start with a question...
Should we all have one? (BP Specialist)
I noticed when I went to an orthopedic Dr. regarding the cyst on my hand, I started questioning any connection to my BPI, he almost quickly wrote me off. Now in my mind there is NO way it's 100% not connected. It's where I rest my hand on the keyboard, so if I get surgery and it comes right back that would be pointless.
I've never been evaluated, and my good shoulder is just in the beginning stages of acting up.
And where would I find one since I'm in Central PA?
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.
Traci,
At least have a Consult with one. It answered alot of questions for me at age 68. It doesn't hurt to get an opinion on your unique injury since all of "us" are different...just my "2 cents" on this...LOL
Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
Hey Traci,
I dont think you have to have a specialist but you should have a great doc that actually listens to what you are saying. My doc is not a bpi specialist but a hand specialist. He works closely with many of the bpi docs (the 3 at the Mayo where I see him and some from other countries, Dr. Kozin from Shriners...) But mostly, Dr. Moran listens to exactly what I am saying and together we works towards finding a solution. When you feel like you are a team then you have the right doc.
They cant possibly know every thing about us as they see us so little so its important to have a team. You know more about your injury than any other person ever will!
Good luck finding a great doc that listens to you.
Hugs,
Amy 21 years old ROBPI from MN
