Adult OBPI & Camp ?

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

Adult OBPI & Camp ?

Post by Kath »

Hi
The Board of Directors, of UBPN, are in the planning process for Camp for 2009 in Florida.

We had a nice group of OBPI/adults at camp this time and a GREAT group of teenage obpi campers.

What is it that would encourage more adult/OBPI to attend Camp?

Would those who attended Camp care to share what Camp experience has to offer for adult/obpi?

What would you like to see at Camp for Adult/OBPI?

Kath robpi/adult
Member BOD UBPN
Kath robpi/adult

Kathleen Mallozzi
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 & Camp ?

Post by Carolyn J »

Kath,
I have a couple of thoughts on this:
Either more than one session with teens,& children [with moms...then exit Moms] for questions, venting, suggestions or a designated "hangout room" for the whole weekend for the "Injured Only". a great place for privacy conversations with teens and pre-teens.
Also a "Mom's Only" room , along with an open community setting too like there usualy is.

More BPI families are in the East and Midwest corridor so I feel Florida WILL be more accessible for more adults to attend/ get time off from work for the travel days.We can also continue to post and "bump up" our experiences and BENEFITS each of us recieved at Camp 2007.It was soo awesome including the introduction to the Myotrac machine that was a surprise to us all. :)

ONE fun "field trip" together to a local attraction?

HUGS,
Carolyn J


Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
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: Adult OBPI & Camp ?

Post by hope16_05 »

I think if thee was more that actually pertained to adults like medical info and therapy for adults. Just because I am an adult does not mean I dont want more function.

Or more info on secondary injuries/issues.


As far as what camp has to offer, well, I personally cant wait for camp because it is a chance to see a lot of great people in similar situations. Camp offers life time friendships with other adults and younger children as well. I love being able to ask others of their experiences and what helps and what does not. We have that opportunity to learn new tricks such as dealing with buttons, shoe laces, zippers... We also have a chance to teach the little ones how we do things so that it may be easier to them some day.


Hope this helps and other people please feel free to share! What would you come to camp for?
Hugs,
Amy 20 years old ROBPI from MN
Amy 28 years old ROBPI from MN
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 & Camp ?

Post by marieke »

I agree with Carolyn that we need more time with the mom's or dad's asking us OBPI adults questions and more time with the kids to be able to, we could even help the tweens (10-13) yr olds with stuff like how to tie your hair up and stuff, like actually show them and get them to try, without the parents watching. We can always get the parents to watch after the kids feel comfortable. I think I would have been embarrassed at first letting my mom watch me do it when i first figured it out...
Anyway, I can't think of much more now, my brain is dead! If I come with more, I'll post again.
Marieke (31, LOBPI)
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
rachelcasa
Posts: 729
Joined: Mon Apr 21, 2003 11:45 pm

Re: Adult OBPI & Camp ?

Post by rachelcasa »

Kath,

I liked the parent interaction along with the kids. However, I felt the parents really would have understood and got more out of it had they been the only one's to ask us adults the questions.

I did notice some of the kids getting a bit embarrassed when their parents were asking questions and their children were sitting right there.

I just feel we could answer the parents questions more in depth and hopefully get across to some of the important aspects of our injury which would later help their children prevent secondary injuries.


The kids panel was great also. I was going to try to dig up some self-esteem information from our counselor at school and see if we couldn't try to incorporate it into the kids panel. Those children asked some of the toughest questions to answer and a lot of the questions had to do with self-esteem and handling teasing on the playground. Just a thought.


As far as getting more adults to go: I go to camp mainly because it's great knowing I am hanging out with people who understand what I have gone through. Although all situations are different it is just a great sense of comfort to be at camp.

I also go to camp because I feel if I can make a difference in just one child's life by helping answer questions or showing them how to do something to accommodate to their injury then my camp experience is absolutely worth it.
twatson603

Re: Adult OBPI & Camp ?

Post by twatson603 »

More awareness.. this is the first time I have came across this website and it has me pretty excited. I didn't know there was a camp with similar situations as my self. I think its great just being able to meet other people.
User avatar
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: Adult OBPI & Camp ?

Post by patpxc »

I hesitate to express my opinion on this but I would be interested in an adults only function--either as part of camp or an extra day adults only .Although, I'd like to attend an all ages BPI camp, I'd like a place to vent and express myself with other birth injured adults where I can freely talk about the effects this injury has had on my life and my own struggles with overuse and emotional issues.
While I agree that the kids are extrememly important, I don't see a whole lot devoted to adults in reading the itineraries for camp.
That may be a selfish attitude, if it is I apologise. I also realize that my overuse at 54 may be an unnecessary scare for a mother whose child is receiving the information, surgeries better ways to preserve function --but in my life--the problem is already there and I would be interested to see how other adults are coping.
I hope this doesn't upset anybody. that is not my intention--just my wish list
Thanks
Pat
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: Adult OBPI & Camp ?

Post by hope16_05 »

Pat, this is exactly what we need to know! Thanks for posting your opinions.

Just wanted to share though that even with the information (I found UBPN at 13) and the surgeries (I have had 5) I am starting to see overuse of my left arm. Thats really sad as I am only 20 years old! It might be a scare but I am thinking unless something more changes, it may be a reality.

It would be cool to have an adult only day.
Thanks again for posting your opinion, it matters!
Hugs,
Amy 20 years old ROBPI from MN
Amy 28 years old ROBPI from MN
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 & Camp ?

Post by Carolyn J »

An "Adult only Day" at Camp 2009 sounds great since we adults don't usually have small children to hurry home to get back to school...oops, Rachael, sorry, you'd just need to come alone next time for the extra day. Let's do it! Our emotional issues are very important to share because most of us adults grew up thinking we were the only ones with this injury and need more private time to share and recieve validation that we weren't "bad" or just complainers that our pains etc weren't just "growing pains" or "all in our heads"! We also need to help each other learn how important it is to ask for help from now on so as to save ourselves from further injury to our "good" limbs from over compensation/over-use. We never seem to have enough time to discuss these things.

Thats my 2 cents more....
HUGS,
Carolyn J
Carolyn J
Adult LOBPI
Joanie
Posts: 499
Joined: Sat Aug 13, 2005 9:03 am

Re: Adult OBPI & Camp ?

Post by Joanie »

I totally understand Pat's hesitation to state her desire. I feel the same way. I went to the last camp, and pretty much felt that I had spent a lot of money to get there, and to be there, but there was not enough there for me. Camp was SO focused on the children. I reasoned that if this is the way that the board wants to do it, nothing I say is going to make any difference, except that they will see me as selfish, so why bother to say anything? Instead of doing that, I had decided that camp was not something I needed, or wanted, to do again. However, I totally agree with Pat.

I'm not dead, yet! When I'm dead my body can go back to the earth and nurture other things which are still living. Right now I'm still alive. I want to get something out of camp for me! Not just the experience of nurturing the children.

I'm not saying that there's anything wrong with nurturing the children. Of course there's nothing wrong with that. It's something that we should do. But I need more than that. I need to have my own needs recognized and addressed, too. If that makes me seem selfish, I'm sorry about that, but this is the way that I feel.

Caregivers are often told to take care of themselves, or they will burn out while taking care of others. This camp had too little opportunity for the adult OBPI's to take care of ourselves. While today's OBPI children know that they are not alone, most, if not all, of us adult OBPI people grew up thinking that we were totally alone. There was no one else out there with an injured arm like ours. We may all have needs that could have been addressed at camp, but weren't.

Events or activities for adults with BPI are also needed so that the children of today can see they have a future worth living tomorrow. They will not be valued only as caregivers to the next generation of BPI children.

I'm sorry that this is so long, but I had things I needed to say.

Joanie
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