Gets worse with age?

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
acanneg
Posts: 17
Joined: Sun Aug 10, 2008 9:28 pm

Re: Gets worse with age?

Post by acanneg »

Well, my injury is on my right arm, and the left hand is the one with the crazy fingerings on bassoon more so than the right. The hardest part was how the right hand needs to be kind of behind you on the side. As with all of these things, we just kind of make it work.

It is interesting to read on here about the different struggles people with LOBPI have vs ROBPI, things that I had never thought about, like going through the drive through or toll booths. For some odd reason, I ended up right handed, so my 'social' struggles are writing on the chalk board, shaking hands and so on.

When you were in your conducting class, did you use both arms, I tried out for drum major in high school, and didnt last very far in the tryouts, because my right arm would be facing the side instead of the front...with no external rotation. Anyways, just wondering how you did it, I love conducting in church and small groups, but always just use the left arm.

Hope all is well with everyone :)
-Andrea
ROBPI-24
Evan J
Posts: 37
Joined: Wed Dec 31, 2008 4:52 pm

Re: Gets worse with age?

Post by Evan J »

Its awesome to read how many of us play instruments! I think for many of us it becomes an obsession to be able to play an instrument like everyone else. I know it has been for me. I'm LOBPI and have been playing guitar for almost 6 years and am totally obsessed. Playing the guitar right handed with an LOBPI has been extremely difficult but totally worth it. I play for hours every day. We should all get together and jam! you guys are awesome.

pickin in Illinois,
Evan/18/LOBPI
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: Gets worse with age?

Post by Carolyn J »

I do hope all of you who play instruments will come to CAMP 2010---I refer you to the Forum "Camp 2010"--- so you all can Jam for us...that would really be good for the young BPI-ERS!! Inspiration come to mind as well as fun entertainment....
Carolyn J
LOBPI/70 & getting younger ;)


Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
concernedmom
Posts: 2
Joined: Wed Mar 11, 2009 3:13 pm

Re: Gets worse with age?

Post by concernedmom »

Hi, I'm new to this site and was looking for information. My daughter, who is now 16 has Obstetrical Brachial Plexus of her left arm. At birth, she had no movement in the arm, but after 6 months of physical therapy, she seemed cured. I had wasn't aware of any limitations until recently. She can't fully extend her arm or turn it over. Lately, she's been complaining of alot of pain in her joints and overall numbness in the affected arm. I took her to a GP who just put it in a sling. I thought it might be carpal tunnel and she's worn a brace at night. I'm going to set-up an appt. with a Neurologist. Are there any who specialize in this particular injury? Has this injury been known to worsen with age? I appreciate any help or advice.
acanneg
Posts: 17
Joined: Sun Aug 10, 2008 9:28 pm

Re: Gets worse with age?

Post by acanneg »

Mine never hurt until that age. I never complained about it really, and just compensated the whole time. When I was around 16, it started hurting a lot. I just think of it as being because of those growth spurts...

I have not gone through any surgeries yet, just done some physical therapy. I have learned a lot through this board, and hope you do too.

Andrea
ROBPI - 24
User avatar
cdmurfee
Posts: 113
Joined: Mon Feb 23, 2009 2:12 am

Re: Gets worse with age?

Post by cdmurfee »

Andrea, in conducting class I used both arms. I was really bad the first time I did it, but after reviewing my tape, I made a 180 in the class and surprised my profesor. I usually just go one arm now and use my left for page turns, but I'll also conduct important passages with both arms for clarity and purpose of my intent. I took a tai chi class at the same time which got me to be more aware and comfortable with my space and use of both arms, although I couldn't quit do all the tai chi moves correctly, but I did my best. Sometimes my arm would ache while conducting, but I just let it rest when it does, and usually it's 2nd wind has much more endurance than the 1st wind.

All my best, Chris 24/LOBPI
User avatar
LJSL0330
Posts: 52
Joined: Wed Feb 27, 2008 9:09 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. Only surgical intervention was muscle lengthening at 2-3 y/o. PT at 35 which increased passive ROM by did not improve active ROM. Also have scoliosis due to left shoulder "hiking."
Location: Evansville, Indiana

Re: Gets worse with age?

Post by LJSL0330 »

Welcome Chris! I wish I'd found a group like then when I was your age! Like you, I never really knew what was wrong with my arm until I was an adult. Like others posting in this thread, my mom felt responsible and never wanted to talk about it. (Until about 5 years ago, I thought the damage was to my MUSCLE, not to the nerves.) Remember one thing: You do not have a DISORDER, you have a birth injury. It ma sound like a small thing, but it can make a huge mental difference!

The main thing with "getting worse" that I've found - I'm 41 - is overuse of my UNaffected arm causing trouble. Read my posts about A.R.T. for more info on those issues.

Again, welcome!
User avatar
marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Gets worse with age?

Post by marieke »

I played clarinet for 7 years and piano for 2. I loved being in high school band, I miss it! (and it's been years!). I still have my clarinet and sheet music :)

Marieke 33, LOBPI
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
User avatar
marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Gets worse with age?

Post by marieke »

Hi, I'm new to this site and was looking for information. My daughter, who is now 16 has Obstetrical Brachial Plexus of her left arm. At birth, she had no movement in the arm, but after 6 months of physical therapy, she seemed cured. I had wasn't aware of any limitations until recently. She can't fully extend her arm or turn it over. Lately, she's been complaining of alot of pain in her joints and overall numbness in the affected arm. I took her to a GP who just put it in a sling. I thought it might be carpal tunnel and she's worn a brace at night. I'm going to set-up an appt. with a Neurologist. Are there any who specialize in this particular injury? Has this injury been known to worsen with age? I appreciate any help or advice.

Your daughter should be seen by a BPI specialist. They know what can be done to help her at this point. A neurologist can help a bit, but you really need to find someone who understands this injury.
http://ubpn.org/medicalresources/us-bpi.html
there is a list here of MDs who are specialists.

It's not so much that the injury gets worse, but more that it can cause more problems with pain in BOTH shoulders/joints due to overuse of the good arm, or arthritis in the injured arm. It can cause scoliosis as we sit "crooked" and do things to twist our bodies to be able to do certain things.

Marieke 33, LOBPI
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
concernedmom
Posts: 2
Joined: Wed Mar 11, 2009 3:13 pm

Re: Gets worse with age?

Post by concernedmom »

Thanks for your help. I will make an appt. with a BPI specialist.
Locked