ADULT OBPI Study being done by TCH - read & share with all other adults.

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
drunkinemu

Re: ADULT OBPI Study being done by TCH - read & share with all other adults.

Post by drunkinemu »

I also agree with Marieke and Carolyn. 95% of the questioneer was regarding "Pain". I kinda feel like I wasted time as the survey research won't help me or others like me that don't have constant pain, I mean, If I eat spicy mexican thats a different story...
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: ADULT OBPI Study being done by TCH - read & share with all other adults.

Post by Carolyn J »

BUMPING UP for some newcomers and lurkers...

HUGS
Carolyn
Carolyn J
Adult LOBPI
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: ADULT OBPI Study being done by TCH - read & share with all other adults.

Post by marieke »

I was contacted by one of the researchers, I will email him what I had issues with.

Please, anyone else who wants to provide them with more info do so too.
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
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: ADULT OBPI Study being done by TCH - read & share with all other adults.

Post by Carolyn J »

BUMPING UP--this IS important because it is the very 1st survey us Adults have been asked to participate in.
Newcomers please participate...something is better than nothing...:)
Carolyn J
LOBPI/70
Carolyn J
Adult LOBPI
Locked