Jen's UBPN Camp 2010 Blog
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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: Jen's UBPN Camp 2010 Blog
I have pics up on Facebook too now
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karategirl1kyu
- Posts: 363
- Joined: Mon Feb 19, 2007 12:59 am
- 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.
- Location: Richmond, RI
Re: Jen's UBPN Camp 2010 Blog
it was cool to have you there long distance!! the whole camp was just so fun!! i loved everyone. i loved how we inspired each other to try new things/ do new things. thank you to everyone 
~Mel/23/LOBPI
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Biker_Jeff
- Posts: 4
- Joined: Fri Oct 15, 2010 11:39 am
- Injury Description, Date, extent, surgical intervention etc: Not injured; my wife has an LOBPI.
- Location: Evansville, IN
Re: Jen's UBPN Camp 2010 Blog
Glad you enjoyed it - I know Lisa and I did! And you're right, as much as it helped Lisa to be able to spend time and talk with people about BPI, it was nice to have time to just hang out.Jennifer P wrote:SUNDAY
... We ended the night with dinner and a little karaoke then the adults went to room 207 to hang out with Lisa and Jeff. It was fun to finally hang out and talk about everything but BPI.
You and Vik are great people, and we really enjoyed meeting you.
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Jennifer P
- Posts: 220
- Joined: Wed Sep 09, 2009 7:12 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
- Location: Pacific Northwest
Re: Jen's UBPN Camp 2010 Blog
Touché!
p.s. Jeff & Lisa, get yer bums on Facebook that's where all the "action" is
p.s. Jeff & Lisa, get yer bums on Facebook that's where all the "action" is
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karategirl1kyu
- Posts: 363
- Joined: Mon Feb 19, 2007 12:59 am
- 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.
- Location: Richmond, RI
Re: Jen's UBPN Camp 2010 Blog
yes yes yes!!! the two of you neeeed to get on facebook!!! lol! you guys are awesome!! well everyone was awesome, but it was fun hanging out with you!!
~Mel/23/LOBPI
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Jennifer P
- Posts: 220
- Joined: Wed Sep 09, 2009 7:12 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
- Location: Pacific Northwest
@ mel-
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: Jen's UBPN Camp 2010 Blog
Thank you Jennifer and one and all for great sharing of your great time at CAMP. Let's all raise funds for UBPN CAMP and Camp Scholarships so that there always will be Camps. If Rich said it was the best...it must have been. Come he** or high water I SHALL NOT MISS another one!
HUgs all around,
Carolyn J
HUgs all around,
Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
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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: Jen's UBPN Camp 2010 Blog
Camp was awesome. It was great to be able to just say "I have a left opbi" or "I have Erb's palsey" and have people know what I meant by that. No need to explain everything including the very basics of what the injury is, much less the implications of it. So many "normal" people just can't fathom the limitations that we face. At camp, everyone "gets it." That was HUGE for me!
That said, my point of view about my limitations was seriously challenged at Camp! I guess subconsciously I kind of expected that everyone else's injury - and resulting "issues" - would be very similar to my own. (I know, I was so niave!) I know I'm not the only one who's felt this way, but I always felt cheated because there were so many things that I couldn't do. Now I realize that Dr. Nath was right - all of those things I really want to do are just that - things I WANT to be able to do; they are not things that are important to daily living. At camp, I saw so many kids with so many more day to day challenges than I ever had and I realized that I needed to stop my complaining and just get on with it. I mean these kids are INCREDIBLE. I kind of had the "it will be good for the kids to see adults who turned out OK despite their injuries" idea, but they already know that they will be OK. I ended up being the one who was reassured that I did turn out OK!
Anyway, it was great to meet everyone and we really enjoyed the impromptu "adults only" party - complete with beverages - that we had in our room Sunday night. I just wish you all didn't live so far away so we could do it more often! How about mini-Camp next year, just for the grown ups! No panels, no chairs in a circle, no two hour bus rides, just a weekend at a hotel with lots of shopping nearby, a hot tub on site, and lots of "adult beverages" in the room parties!
That said, my point of view about my limitations was seriously challenged at Camp! I guess subconsciously I kind of expected that everyone else's injury - and resulting "issues" - would be very similar to my own. (I know, I was so niave!) I know I'm not the only one who's felt this way, but I always felt cheated because there were so many things that I couldn't do. Now I realize that Dr. Nath was right - all of those things I really want to do are just that - things I WANT to be able to do; they are not things that are important to daily living. At camp, I saw so many kids with so many more day to day challenges than I ever had and I realized that I needed to stop my complaining and just get on with it. I mean these kids are INCREDIBLE. I kind of had the "it will be good for the kids to see adults who turned out OK despite their injuries" idea, but they already know that they will be OK. I ended up being the one who was reassured that I did turn out OK!
Anyway, it was great to meet everyone and we really enjoyed the impromptu "adults only" party - complete with beverages - that we had in our room Sunday night. I just wish you all didn't live so far away so we could do it more often! How about mini-Camp next year, just for the grown ups! No panels, no chairs in a circle, no two hour bus rides, just a weekend at a hotel with lots of shopping nearby, a hot tub on site, and lots of "adult beverages" in the room parties!
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Jennifer P
- Posts: 220
- Joined: Wed Sep 09, 2009 7:12 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
- Location: Pacific Northwest
Re: Jen's UBPN Camp 2010 Blog
Heck yes to lots of shopping 
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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:
