We are in the EARLY planning stages of CAMP and I REALLY want to see some TBPI there!
So what do I need? What do we need to offer at camp to attract more of you? Is it a timing thing? Financial thing? Social thing?
I really need some input from YOU as to what we want...
HELP ME PLEASE!
Thanks peeps!
I need some input!
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cbe411
- Posts: 1393
- Joined: Sun Jun 01, 2003 8:27 pm
- Injury Description, Date, extent, surgical intervention etc: MVA in 2001, nerve graph in 2002, Median Nerve Transfer in 2004 and an unsuccessful Gracillis Muscle Transfer in 2006. I am living life and loving it! Feel free to contact me :)
- Location: Grosse Pointe Woods, MI
- Contact:
Re: I need some input!
hey courtney. hope all is well. i'd like something preferably closer to me in new york. maybe during the summer? i too am interested in how other tbpi's have managed to take care of children and just get along in life in general. i want my fiancee to meet other significant others as well because i know its hard for him too. the camp might be hard for some to do overnight so maybe a day long thing? im also trying to find or maybe coordinate a fundraiser. hope all is well
tina
tina
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swhite1
- Posts: 295
- Joined: Mon Oct 16, 2006 4:15 pm
- Injury Description, Date, extent, surgical intervention etc: Bad fall in June of 2006
LTBPI - Location: right here in Texas
Re: I need some input!
I'm sorry I can't help.
I may be interested in going this year though.
I may be interested in going this year though.
Re: I need some input!
Hey Court!
Think the weekend that was chosen last time was hard for us. Getting kids ready for back to school and Dustin's college made it hard to leave. Guess I would have to let Dustin know he's TBPI too, lol.
Sue
Think the weekend that was chosen last time was hard for us. Getting kids ready for back to school and Dustin's college made it hard to leave. Guess I would have to let Dustin know he's TBPI too, lol.
Sue
Re: I need some input!
Hi Court~
I think the reason I have never gone is that my injury is too old for you new comers. I had surgeries that they don't do anymore. I have moved on, which all of you will do sometime soon-I hope. I enjoy reading the new discoveries and I think this support sight is a God sent. I wish I had it 20 years ago.
However, I do think I have something to offer for this injury. I have had MANY surgeries at Mayo, 5 in the past year, but after posting my surgeries I believe many people here aren't ready for them. I know the most important thing right now is getting more use of their arms-OF COURSE. My surgeries were more cosmetic, to have a normal "looking" arm.
I think what this board does with having these camps are FANTASTIC. I went many years not knowing anyone that knew what I was going through.
Keep it going-everyone that is new to injury needs you, Court, and your board of directors!
Good luck with camp:)
I think the reason I have never gone is that my injury is too old for you new comers. I had surgeries that they don't do anymore. I have moved on, which all of you will do sometime soon-I hope. I enjoy reading the new discoveries and I think this support sight is a God sent. I wish I had it 20 years ago.
However, I do think I have something to offer for this injury. I have had MANY surgeries at Mayo, 5 in the past year, but after posting my surgeries I believe many people here aren't ready for them. I know the most important thing right now is getting more use of their arms-OF COURSE. My surgeries were more cosmetic, to have a normal "looking" arm.
I think what this board does with having these camps are FANTASTIC. I went many years not knowing anyone that knew what I was going through.
Keep it going-everyone that is new to injury needs you, Court, and your board of directors!
Good luck with camp:)
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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: I need some input!
Scott W,
I really will be BUMMED OUT if you don't come to CAMP 2009 next year!(Camp is every 2 years). Did'ja all see the happy kids and parents in the pictures on the Camp 2007's Forum?? Everyone recieves soo much from one another. It helps us all in so many ways.
You Go, Court!!!
HUGS all around,
Carolyn J
LOBPI/adult
Message was edited by: Carolyn J
I really will be BUMMED OUT if you don't come to CAMP 2009 next year!(Camp is every 2 years). Did'ja all see the happy kids and parents in the pictures on the Camp 2007's Forum?? Everyone recieves soo much from one another. It helps us all in so many ways.
You Go, Court!!!
HUGS all around,
Carolyn J
LOBPI/adult
Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
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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: I need some input!
And as a PS: It'll be in October this time. In Florida!
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Drake's Mom
- Posts: 70
- Joined: Mon Jun 11, 2007 3:59 pm
Re: I need some input!
well i assume Drake is considered a TBPI. they are not quiet sure what the exact cause was but it wasn't from birth, most likely viral, so he is traumatic. I haven't gone to camp before simply because i didn't find this board until a few months before the last camp and we already had the trip to minn. planned. So i am going to try my hardest to make it to Florida. Drake has never met anyone with this injury and i can't wait for him to because i think he will feel so much better about what he can't do because others have the same problems. So i hope to see a lot of kids with TBPI who know what it's like to loose something you did have at one time and to have to relearn how to do things. So i'm sorry i don't have much input on how to improve camp because we have yet to go, but will be there in 2009.
Teresa
Teresa
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Christopher
- Posts: 845
- Joined: Wed Jun 18, 2003 10:09 pm
- Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)
"Do what you can, with what you have, where you are."
~Theodore Roosevelt - Location: Los Angeles, California USA
Re: I need some input!
Hey Court,
For me there would have to be a sense of purpose much greater than just a social gathering. Something different than what we can exchange here on the boards.
If there was a strong interest in cure advocacy, injury awareness, different experimental therapies to be discussed by practitioners (Low Level Laser Therapy, Hyperbaric oxygen therapy (HBOT), Stem Cell regeneration therapy, Neural regeneration research, etc.), or specialists aiding people returning to an athletic and active lifestyle then I would be interested. After 5 years of posting this kind of information on this site, it is evident that no one else is really interested in it or cares enough to make a proactive effort in putting this injury in the history books.
It is my feeling & understanding that all the science is available to make this happen, but it needs a galvanizing force to advocate for more funding, and public awareness. If I felt there was one other person out there that took a real interest in making changes and wanted this injury to be as thing of the past, then you couldn't stop me from going to camp.
I am much more likely to go to a Spinal Cord Injury rally than a Brachial Plexus Injury gathering because people with in the SCI community seem to be a lot more interested and motivated in eradicating their condition. Maybe our injury is just tolerable enough for people to accept it and move on. For me it's not. I believe things can be different and would like to make it so.
This is why I have been active in the SCI community to change legislation, funding for research, and clinical trials.
If I knew of a way to get folks more involved and interested in changing the future in regards to this injury, I would. The best I can do is to pitch in where the efforts and interests are already ongoing, and continually try and share what I find out. Maybe it's just my male psyche that needs to "fix" things that are broken is what I'm talking about, who knows.
I do hope to make it to a camp one of these days, if not just to personally thank everyone that keeps this site going! I am grateful and appreciative.
Cheers,
Christopher
(conference happening today with top researchers in the neural & spinal cord regeneration field)
http://www.working2walk.org
(discussion boards about conference and researchers)
http://sci.rutgers.edu/forum/showthread.php?t=98549
For me there would have to be a sense of purpose much greater than just a social gathering. Something different than what we can exchange here on the boards.
If there was a strong interest in cure advocacy, injury awareness, different experimental therapies to be discussed by practitioners (Low Level Laser Therapy, Hyperbaric oxygen therapy (HBOT), Stem Cell regeneration therapy, Neural regeneration research, etc.), or specialists aiding people returning to an athletic and active lifestyle then I would be interested. After 5 years of posting this kind of information on this site, it is evident that no one else is really interested in it or cares enough to make a proactive effort in putting this injury in the history books.
It is my feeling & understanding that all the science is available to make this happen, but it needs a galvanizing force to advocate for more funding, and public awareness. If I felt there was one other person out there that took a real interest in making changes and wanted this injury to be as thing of the past, then you couldn't stop me from going to camp.
I am much more likely to go to a Spinal Cord Injury rally than a Brachial Plexus Injury gathering because people with in the SCI community seem to be a lot more interested and motivated in eradicating their condition. Maybe our injury is just tolerable enough for people to accept it and move on. For me it's not. I believe things can be different and would like to make it so.
This is why I have been active in the SCI community to change legislation, funding for research, and clinical trials.
If I knew of a way to get folks more involved and interested in changing the future in regards to this injury, I would. The best I can do is to pitch in where the efforts and interests are already ongoing, and continually try and share what I find out. Maybe it's just my male psyche that needs to "fix" things that are broken is what I'm talking about, who knows.
I do hope to make it to a camp one of these days, if not just to personally thank everyone that keeps this site going! I am grateful and appreciative.
Cheers,
Christopher
(conference happening today with top researchers in the neural & spinal cord regeneration field)
http://www.working2walk.org
(discussion boards about conference and researchers)
http://sci.rutgers.edu/forum/showthread.php?t=98549