Guys,
I guess that is my problem. All of my life I have taken care of someone else. I have had to explain,hide, be embarrased,adopt an attitude regarding my OBPI. For once in my life I want to be selfish. I want to meet as adults and talk about secondary issues and the pain of growing up and gym class--a lot of things that kids don't experience to the degree we did in our generation. It has had a big impact on my life--and I really want something where I can relate to other adults with. If it has to be a separate meeting or conference,that would be ok.
I don't want to appear selfish either, but I really feel, at this point in my life, I need something that will contribute to my well being and mental and physical health.
Sorry if that sounds negative, but maybe a 3 day camp with adults and children separate for two of those days and an integrated day at the end. I saw Dr. Nath. Surgery won't improve me that much---I need to be able to be a baby or vent.
It doesn't seem like there is a place to do that at camp from what I have heard from other adults.
This isn't meant to offend--just to vent my frustration
Thanks
Pat
Thanks
Pat
Camp 2009
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patpxc
- Posts: 315
- Joined: Sat Nov 03, 2001 1:06 am
- Injury Description, Date, extent, surgical intervention etc: C-5 and C-6. Unable to supinate. Contracture elbow. Wrist bone underdeveloped.
Can raise forearm to mouth level. shoulder is limited in movement. Unable to put arm behind back. Secondary- early arthritis, carpal tunnel, pronator syndrome,scoliosis - Location: Ohio
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richinma2005
- Posts: 861
- Joined: Thu Sep 29, 2005 12:00 pm
- Injury Description, Date, extent, surgical intervention etc: Daughter Kailyn ROBPI, June 14, 1997.
Surgery with Dr Waters (BCH), April 1999 and in February 2012
2 more daughters, Julia (1999), Sarah(2002) born Cesarean.
Re: Camp 2009
Pat,
We are really going to focus on trying to meet the needs of adult BPI as well as what we have already been successful with. No selfish feelings interpreted. We want to address the major needs, and have anticipated some of the issues, emotional scares, self-esteem , pain, secondary health issues, but we wanted to makes sure that these were things that the adults would want to experience in presentations and seminars. I anticipate a lot of options for adults and hope we have a turn-out that supports our programming. I also would love to see someone come in and discuss cutting edge research on repair and pain management.
We want to listen to the community and provide for those needs.
We are really going to focus on trying to meet the needs of adult BPI as well as what we have already been successful with. No selfish feelings interpreted. We want to address the major needs, and have anticipated some of the issues, emotional scares, self-esteem , pain, secondary health issues, but we wanted to makes sure that these were things that the adults would want to experience in presentations and seminars. I anticipate a lot of options for adults and hope we have a turn-out that supports our programming. I also would love to see someone come in and discuss cutting edge research on repair and pain management.
We want to listen to the community and provide for those needs.
Re: Camp 2009
Pat, that's not selfish, or at least, I'm just as selfish as you. If I'm going to go down to camp, and I'm investing my time, energy and not an insignificant amount of money there has to be something in it for me.
I'd like to see more adult-centered offerings that let injured adults have time together and not just highlighted as a resource for parents. More specifically, educational sessions on adult pain and pain management, secondary injuries, adaptive tools/technology, physical therapy on your own, issues with services from employers/government/insurance, or informal sessions that have open discussion time for adults to talk to each other about issues.
I'll admit that I haven't been to camp since 2003, and one of the main reasons for that is that is that there wasn't a lot of time that wasn't focused on the kids or kid centered activity even the meals were sort of focused around children and parents. It's not that i don't see the need for lots of kid stuff, it's just that I have different needs.
More adult oriented and adult-only time would sway me toward attending another camp, especially if we could attract more of the adults around here to come. These are just what I could brainstorm about things I'd be interested in, feel free to ask or email me if you want clarification.
Carrie
26 rOBPI
I'd like to see more adult-centered offerings that let injured adults have time together and not just highlighted as a resource for parents. More specifically, educational sessions on adult pain and pain management, secondary injuries, adaptive tools/technology, physical therapy on your own, issues with services from employers/government/insurance, or informal sessions that have open discussion time for adults to talk to each other about issues.
I'll admit that I haven't been to camp since 2003, and one of the main reasons for that is that is that there wasn't a lot of time that wasn't focused on the kids or kid centered activity even the meals were sort of focused around children and parents. It's not that i don't see the need for lots of kid stuff, it's just that I have different needs.
More adult oriented and adult-only time would sway me toward attending another camp, especially if we could attract more of the adults around here to come. These are just what I could brainstorm about things I'd be interested in, feel free to ask or email me if you want clarification.
Carrie
26 rOBPI
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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: Camp 2009
Thanks Carrie
This is what I have been saying for years and we are planning on making this camp Adult/obpi friendly.
This camp site it not just for kids and families and will serve the adult/bpi community.
I've been there and it's the first one that will truly be for everyone.
I am so happy that you have all responded to this thread.
Let's hear from the rest of you out there so that Camp 2009 can be what we need as adult/obpi.
Now is the time to speak up so we can gather the information and plan ahead.
Thanks Rich for bring this out on the Message Board.
Kath robpi/adult
This is what I have been saying for years and we are planning on making this camp Adult/obpi friendly.
This camp site it not just for kids and families and will serve the adult/bpi community.
I've been there and it's the first one that will truly be for everyone.
I am so happy that you have all responded to this thread.
Let's hear from the rest of you out there so that Camp 2009 can be what we need as adult/obpi.
Now is the time to speak up so we can gather the information and plan ahead.
Thanks Rich for bring this out on the Message Board.
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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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: Camp 2009
Good Day All,
I have spoken/written before about having separate private places for each group to have of their own to "retreat to",OBPI's,TBPI's, Parents and families, and 1 large central place to gather informally together in betwen planned sesions/activies. I would wish these meet-up rooms/places be made available 24 hours with coffee pots in each room along with the boxes of kleenex(Just kidding about the kleenex!..). I hereby volunteer, with approval of the BOD of course, to "man" the coffee pots as to not make more work for any member of the BOD.
I also would like to request to have Dr. Belsberg,repeat and have alot of time to speak about Pain Management along with a Physitrist(sp.?Specialist.
HUGS al around,
Carolyn J
I have spoken/written before about having separate private places for each group to have of their own to "retreat to",OBPI's,TBPI's, Parents and families, and 1 large central place to gather informally together in betwen planned sesions/activies. I would wish these meet-up rooms/places be made available 24 hours with coffee pots in each room along with the boxes of kleenex(Just kidding about the kleenex!..). I hereby volunteer, with approval of the BOD of course, to "man" the coffee pots as to not make more work for any member of the BOD.
I also would like to request to have Dr. Belsberg,repeat and have alot of time to speak about Pain Management along with a Physitrist(sp.?Specialist.
HUGS al around,
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: Camp 2009
Physiatrist (Physical Medicine & Rehabilitation)
http://www.orthopedicsportsmed.com/web/ ... atrics.jsp
http://www.orthopedicsportsmed.com/web/ ... atrics.jsp
Re: Camp 2009
I HAVE NOT BEEN TO CAMP YET BUT I AM HOPING TO BE THERE THIS TIME IN 2009.I AGREE WITH ALL WHO SAID ADULT VENTING MEETING THAT SOUNDS GOOD.BUT I WAS THINKING AND THIS MAY SOUND DUMB, I KNOW WE ALL HAVE DIFFERENT SEVERITIES OF THIS DISABILITY,SO IF IT IS POSSIBLE MAYBE GET SOME VENDORS OR PEOPLE WHO HAVE SPECIAL EQUIPMENT THAT WE MAY NEED IN EVERYDAY LIVING,THAT WE CAN GET INFO ABOUT LIKE, HAIRDRYERS, CAMERAS,CAMERAS ARE A BIG ONE FOR ME I CANNOT FIND A LEFTHANDED CAMERA.LIKE I SAID MAY SOUND A LITTLE DUMB BUT I HAVE NEVER BEEN TO CAMP I REALLY DO NOT KNOW WHAT TAKES PLACE.
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Baeta
Re: Camp 2009
I would like to see there be help for secondary injury as well. I have carpal tunnel and I don't know how to stop this secondary injury, or any others that might come up! Until I found this site, i never really thought there was much in the way of secondary injury because I've been vastly uninformed about it.
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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: Camp 2009
Great idea to have 1-or-2 venders like CS Smith suggested! I bet Amy and Marieke are savy about "Adaptive
appliances & assessories. However, there is always the danger of over-load?? The more adults with TBPI and OBPI who commit to attending CAMP 2009 in Florida, the better chance of recruiting venders. At Camp 2005 only 3 adults with TBPI attended. We would need more than that to "recruit" venders!!
other ideas:
At least,may the BOD consider a Myotrac presentation with a company representitive there too.
A demostration of Feldenhais therapy since Amy is recieving relief I would want to see or experience before I rob a bank to pay for this myself!!
A student/s massuse(they need practicum hours) available for MOM's and Injured adults.[it would be an occassion for Awareness especially if OT attends CAMP too.
Hugs all around,
Carolyn J
Message was edited by: Carolyn J
appliances & assessories. However, there is always the danger of over-load?? The more adults with TBPI and OBPI who commit to attending CAMP 2009 in Florida, the better chance of recruiting venders. At Camp 2005 only 3 adults with TBPI attended. We would need more than that to "recruit" venders!!
other ideas:
At least,may the BOD consider a Myotrac presentation with a company representitive there too.
A demostration of Feldenhais therapy since Amy is recieving relief I would want to see or experience before I rob a bank to pay for this myself!!
A student/s massuse(they need practicum hours) available for MOM's and Injured adults.[it would be an occassion for Awareness especially if OT attends CAMP too.
Hugs all around,
Carolyn J
Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
Re: Camp 2009
During the past few days I was very busy preparing my home for Passover. I wasn't on the boards. I gave this subject some thought, but I'm not an idea person. I didn't come up with any ideas, except just time for the adult OBPI's to get together and talk. Talk about our emotional pain, physical pain, ways we have found to do things, appliances that help us, therapies that help us, etc. The people who have posted since I was last here have come up with some excellent ideas. I second all their ideas.
Joanie
Joanie