Camp 2009

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

Camp 2009

Post by richinma2005 »

Ideas for Programs for Camp 2009


As a BOD, we are starting to put together ideas of what programming attendees to our next camp would like to have available. The site we are working towards will have alot of fun activities for all ages, and we are confident that it will appeal to everyone. What we want to make sure is that that we offer the educational and supportive seminars that also appeal to all age groups, injury level and individual needs-specifically for the adults with an injury..

We are hoping to get some ideas from the community as to what you might want to get out of this next camp.

What types of programming will appeal to you as attendees? We have several ideas such as bringing in Pain Specialists, vocational councilers, Social Security speakers, Motivational speakers, etc

Let us know what you would like to see. You'll see something in the next Outreach as well asking for input.

I posted this on the camp board too, and may be a better place to respond if you have some ideas

Thanks

Rich Looby
VP BOD
User avatar
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

Post by richinma2005 »

Come-on guys..what do you want to see at camp?
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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

Re: Camp 2009

Post by patpxc »

I have voiced my opinion on previous posts,but to reiterate--something that is adults only that we don't have to choose our words or hold back. A place to FREELY vent . Time with the kids and their parents is great part of the time--but I selfishly want some time devoted to what myself and the other adults have experienced in our lives.
So that being said,maybe a psychologist that specializes in this to help us deal with old,but not forgotten childhoods and issues--whether it be being forced to give up a much loved activity due to pain or arthritis,or going on disability,to family not understanding our lives and frustrations.
Thanks
Pat
User avatar
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

Post by richinma2005 »

Thanks Pat,

This is exactly what we are loking for to develop good helpful programs.

Thanks

-rich
Joanie
Posts: 499
Joined: Sat Aug 13, 2005 9:03 am

Re: Camp 2009

Post by Joanie »

Pat said it very well. I don't want to sound selfish, either, but more time for adult OBPI's would be very good. So many of us adults grew up knowing no other BPI people. We thought we were alone. After being alone for so many years, I don't come to Camp UBPN to be alone there, too, while all the activities center around the children.

The children with BPI's have an advantage over us. They have UBPN now, while they are still children. They know that there are other children out there like them. They know each other. Their parents have other parents to relate to who also have BPI children. There are also sib shops.

It's too late for my parents and my sister. They are gone now. They were gone long before I found UBPN. My sole surviving sibling has said that he doesn't remember much from our childhood years. I doubt that he would come to this camp so that he could go to the sib shop. My husband won't come, either.

I was disappointed at Camp 2005 to find that the horseback riding was really meant for the kids only. I'd never been on a horse and had made up my mind that I was going to do it this time. I almost changed my mind when I saw that the only adults there were just there to help the children.

I was very disappointed at camp 2007. There was so little there for me. The one time that the adult OBPI's got together, we were in a room that was so cold that I couldn't wait for the session to end, so that I could get out of that ice box. The others that I spoke to immediately upon exiting that room, said that they had felt the same way.

So, what I want is more programming for adult OBPI's.

Sorry if this sounds bitter. I can't help it. Bitter is how I'm feeling right now.

Thanks for listening,

Joanie, 59 years, LOBPI
User avatar
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

Post by richinma2005 »

Joanie,

It doesn't sound bitter at all, and this is what we are hoping to do. Do you have any suggestions in programming that you would find useful? Is there information that you would like tohear that may help you now or in the future? Try and list some areas that you feel would benefit you

-rich
Joanie
Posts: 499
Joined: Sat Aug 13, 2005 9:03 am

Re: Camp 2009

Post by Joanie »

Rich,

All I can think of right now is just more time with other adult OBPI's. I'll give it more thought and see if I can come up with any ideas.

Joanie
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

Post by Kath »

Come on guys speak up!
So far only two people were brave enough to speak up.
Over the years I have heard many adult/obpi complain that Camp offers them nothing just for OBPI/adults.

Thanks girls for speaking up... I agree we need to meet with other adult/obpi in a private space to meet and ask questions we would not ask in public.

Now what would attract obpi men to camp?

How about speakers regarding SSD/Pain management/Testing/PT/OT for OBPI.
I also see a need for some sort of program on how to manage our secondary injuries and prevention of secondary injuries.

Come on now is the time to make those requests for Camp 2009 in Fla... It's a great place for adults and offers something for everyone. It's a great place we have chosen for Camp 2009.

Kath robpi/adult
Kath robpi/adult

Kathleen Mallozzi
User avatar
hope16_05
Posts: 1670
Joined: Tue Jul 01, 2003 11:33 am
Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
Location: Minnesota
Contact:

Re: Camp 2009

Post by hope16_05 »

Kath going along with what you said, I really need to see something on managing the secondary injuries. The are really trying hard to limit my activities and I am only 21.

Some info on handicapped parking would be helpful too. Still trying to battle that one.

Thats what I can think of for now.
Hugs,
Amy 21 years old ROBPI from MN
Amy 28 years old ROBPI from MN
brookepoague
Posts: 64
Joined: Tue Oct 16, 2007 4:47 pm

Re: Camp 2009

Post by brookepoague »

I can't believe there's hasn't been more input! I've never been to camp before but my family will be there is 2009 with our son. All of the hands on activites that I've read about in past Outreach editions and it would be nice if adults and children could participate together.

From my standpoint, any discussions or presentations regarding therapy techniques are great because so many therapist don't know much about this injury and I know I am always looking for new ways to do therapy for my son. Also, I think a discussion regarding coping mechanisms would be great. I know alot of us, and I am sure the adult OBPI as well, have days when it's all alittle too much and it gets very stressful and depressing. How do we cope as parents and injured adults, how do we explain and help our children deal with the injury...things along that line?

I also wondered if any companies would bei nterested in bring products that could be of benefit. I know we just purchased an e-stim machine for the home. This companies allows individuals for whom insurance doesn't cover the machine to purchase it for $100. I thought this was a great deal and I'm sure there are other companies out there that we could all benefit from.
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