Hi everyone,
How great it is to discover this forum. I was born in Ireland 55 years ago. At 10 lb 10 oz I had difficulty being born and this led to my Erb's Palsy in my left arm. I moved to England at around age three and to date have never met anyone else with this condition. The only society in the UK tends to cater for parents of children with Erbs. It's great to find a forum where I can share other adults' experiences of growing up with Erbs (OBPI).
I recently had a conversation with my mother, who challenged my perception that I have a disability. After 50 or so years I have only recently admitted that I have a disability so this was a bit of a blow to me. I wonder how other people feel about having Erbs, and whether some regard themselves as having a disability.
New member from UK
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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: New member from UK
Well Chrissie
Welcome to the club! It's so funny our hour families view us and assume we are not disabled. When I mentioned the fact that I was disable to an older brother he told me I was never disabled... A cousin said they thought I was cured of my little problem as a child... and someone asked why I would talk about.
I think, many of our families were in denial years ago. They feared for us because if we were designated as disabled people, we would not get hire and people would think we were mentally disabled.
You have come to the right place for support.
I know of one group in the UK but am not sure if they have many active adult/obpi. There is a UK group for tbpi but their issues are different from ours.
Kath robpi/adult
Welcome to the club! It's so funny our hour families view us and assume we are not disabled. When I mentioned the fact that I was disable to an older brother he told me I was never disabled... A cousin said they thought I was cured of my little problem as a child... and someone asked why I would talk about.
I think, many of our families were in denial years ago. They feared for us because if we were designated as disabled people, we would not get hire and people would think we were mentally disabled.
You have come to the right place for support.
I know of one group in the UK but am not sure if they have many active adult/obpi. There is a UK group for tbpi but their issues are different from ours.
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: New member from UK
Hi Kath, thanks for the welcome. I have had a look through some of the messages and joining the board has already been a great help.
With regard to the UK, OBPI/Erbs is not as well known about. There is a UK organisation with a forum but this is largely for Mums of children with this condition. So I am really pleased that I have found your forum.
I have been wondering if it is too late for me to get any treatment to help increase functionality or help to stretch the tendons, etc. There is not so much info available over here.
With regard to the UK, OBPI/Erbs is not as well known about. There is a UK organisation with a forum but this is largely for Mums of children with this condition. So I am really pleased that I have found your forum.
I have been wondering if it is too late for me to get any treatment to help increase functionality or help to stretch the tendons, etc. There is not so much info available over here.
Re: New member from UK
Hi Chrissie!! Im 36, ROBPI from Scotland.
I know how you feel about finding this site. I was the same. I had Erbs for all those years and thought i was the only one!! My GP wrote a sick note one day and the reason was "Erbs Palsy". My first instinct was "what the heck is that????" lololol
Of course i Googled and found this place. It was a Godsend at that time as i was going through a really rough stage with the Erbs. I had an athrodesis done in 2000 .... a surgery usually performed on ankles in the UK lol. Basically, they broke my shoulder bone and turned it around so i have a better range of movement and now very little in the way of pain ..... although my "unaffected" arm still sees to that LOL. Now though, instead of my arm sticking out to the side, it juts out to the front, so looks-wise it was a "no win" lol.
I believe there is a surgeon in Leeds who specialises in Erbs, but his name escapes me right now, sorry.
I have never met anyone else with Erbs, but im hoping to meet with one of the boys and his mum from the UK Erbs board when we all just happen to be in Florida at the same time in September.
I actually came here today to see about Camp 2009 which was supposed to be in Florida around the time we are there, but im gutted to learn its been cancelled
I know how you feel about finding this site. I was the same. I had Erbs for all those years and thought i was the only one!! My GP wrote a sick note one day and the reason was "Erbs Palsy". My first instinct was "what the heck is that????" lololol
Of course i Googled and found this place. It was a Godsend at that time as i was going through a really rough stage with the Erbs. I had an athrodesis done in 2000 .... a surgery usually performed on ankles in the UK lol. Basically, they broke my shoulder bone and turned it around so i have a better range of movement and now very little in the way of pain ..... although my "unaffected" arm still sees to that LOL. Now though, instead of my arm sticking out to the side, it juts out to the front, so looks-wise it was a "no win" lol.
I believe there is a surgeon in Leeds who specialises in Erbs, but his name escapes me right now, sorry.
I have never met anyone else with Erbs, but im hoping to meet with one of the boys and his mum from the UK Erbs board when we all just happen to be in Florida at the same time in September.
I actually came here today to see about Camp 2009 which was supposed to be in Florida around the time we are there, but im gutted to learn its been cancelled
Re: New member from UK
Hi Janny,
It's good to make the acquaintance of someone else in the UK with Erbs. Like you, I've never met anyone else with the condition. I have seen some photos recently - I think it was of people who met at the camp - and it was quite a moment for me to see other people who had OBPIs similar to mine. It would have been so good to have others who were going through similar experiences to share with when I was younger.
I have been to the GP recently and he is referring me to a consultant. I thought it would be an orthopaedic specialist but it will be a neurologist. As I live in the south east I have choices of an adult neurologist or general ones in my area. I'm not sure what to opt for. I really want someone to tell me what damage was done and whether this is having an impact on other parts of my body, which I suspect it is. I have had lower back pain and my whole gait seems to be slightly twisted. I'm hoping something can be done to improve my posture, etc for the future, maybe via physio. I doubt there is much that can be done to improve my arm - although I may be pleasantly surprised.
Chrissie
It's good to make the acquaintance of someone else in the UK with Erbs. Like you, I've never met anyone else with the condition. I have seen some photos recently - I think it was of people who met at the camp - and it was quite a moment for me to see other people who had OBPIs similar to mine. It would have been so good to have others who were going through similar experiences to share with when I was younger.
I have been to the GP recently and he is referring me to a consultant. I thought it would be an orthopaedic specialist but it will be a neurologist. As I live in the south east I have choices of an adult neurologist or general ones in my area. I'm not sure what to opt for. I really want someone to tell me what damage was done and whether this is having an impact on other parts of my body, which I suspect it is. I have had lower back pain and my whole gait seems to be slightly twisted. I'm hoping something can be done to improve my posture, etc for the future, maybe via physio. I doubt there is much that can be done to improve my arm - although I may be pleasantly surprised.
Chrissie
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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: New member from UK
Chrissie,
Don't rule out a Chiropractor to give relief for your back too, I have chronic back pain but all a PT would do is give me a set of excercizes to do regularly at home, AND would not advise continuing PT and/or massages altho I printed out that they work for us BPI-ers. ON MY OWN, I found doing gentle strectches and the excercises in a warm water pool( hot tub for 15 mins.) helps alot. At Camp 2007, a PT did a workshop for us at the pool and confirmed swimming is the best exercize for OBPI's---TBPI's too. It has to be in warm water.
Carolyn J
LOBPI/70----;)
Message was edited by: Carolyn J
Don't rule out a Chiropractor to give relief for your back too, I have chronic back pain but all a PT would do is give me a set of excercizes to do regularly at home, AND would not advise continuing PT and/or massages altho I printed out that they work for us BPI-ers. ON MY OWN, I found doing gentle strectches and the excercises in a warm water pool( hot tub for 15 mins.) helps alot. At Camp 2007, a PT did a workshop for us at the pool and confirmed swimming is the best exercize for OBPI's---TBPI's too. It has to be in warm water.
Carolyn J
LOBPI/70----;)
Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
Re: New member from UK
Well nice to meet you too Chrissie!! Ive never seen a Neurologist, my work was done by Orthopaedics so i really cant advise, sorry.
I too suffer from a lot of back and neck pain. I had a routine scan for Osteoporosis (nothing to do with the Erbs) a couple of years ago, and the woman doing the scan noticed right away i have 2 curvatures, one at the neck and one at the base of my spine. Further investigation proved this to be the case. Unfortunately i do not have time for the physio they recommended. I know i will pay for it later on in life, but right now i need to be working and providing for my kids and cant be taking time off willy-nilly.
As Carolyn says though, if you go for hydrotherapy, make sure it is WARM water!!!! I learned that one quick lol!
I too suffer from a lot of back and neck pain. I had a routine scan for Osteoporosis (nothing to do with the Erbs) a couple of years ago, and the woman doing the scan noticed right away i have 2 curvatures, one at the neck and one at the base of my spine. Further investigation proved this to be the case. Unfortunately i do not have time for the physio they recommended. I know i will pay for it later on in life, but right now i need to be working and providing for my kids and cant be taking time off willy-nilly.
As Carolyn says though, if you go for hydrotherapy, make sure it is WARM water!!!! I learned that one quick lol!
Re: New member from UK
Since I've joined this board and read through some of the threads I've begun to notice more about my LOBPI. For the first time (in 55 years) I have noticed how different my shoulder bones are. There seems to be something either undeveloped or missing in my left side. Also, my rib cage on the left has always protruded and I was fascinated to read about the possibility of an extra portion of rib, although I haven't been able to verify this in me. I feel it's time I expanded my personal physical and psychological knowledge.
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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: New member from UK
Hi Chrissie,
Just a word...we adults have share on the boards alot to always insist to have shots (vaccines) and blood pressure done on our good armsonly. circulation is different on our injured side.
gotta go now but more later...
Carolyn J
LOBPI
Just a word...we adults have share on the boards alot to always insist to have shots (vaccines) and blood pressure done on our good armsonly. circulation is different on our injured side.
gotta go now but more later...
Carolyn J
LOBPI
Carolyn J
Adult LOBPI
Adult LOBPI
Re: New member from UK
Carolyn,
Thanks for your jabs & blood pressure advice. I always profer my right arm for blood pressure tests and well jabs have never featured due to painful experiences in my LOBPI as a child. I'm learning so much through this board and so wish that I had found you all sooner. This info is invaluable in my learning about the actual and potential impacts of my LOBPI. Hugs Chrissie
Thanks for your jabs & blood pressure advice. I always profer my right arm for blood pressure tests and well jabs have never featured due to painful experiences in my LOBPI as a child. I'm learning so much through this board and so wish that I had found you all sooner. This info is invaluable in my learning about the actual and potential impacts of my LOBPI. Hugs Chrissie