CINCINNATI CONFERENCE...COULD SOMEONE PLEASE SHARE WITH US ABOUT IT.. :)

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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:

CINCINNATI CONFERENCE...COULD SOMEONE PLEASE SHARE WITH US ABOUT IT.. :)

Post by Carolyn J »

Tanya or someone who attended, please share some of what you recieved from being there. I sure would appreciate hearing a little about it. Thank you in advance.

Tanya, you are an Angel to admit you "cheated" and got your new OUTREACH at the Conference! YOU GO GIRL!!

HUGS all around, :^)
Carolyn J


Message was edited by: Carolyn J


Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
claudia
Posts: 1241
Joined: Tue Nov 06, 2001 12:21 pm

Re: CINCINNATI CONFERENCE...COULD SOMEONE PLEASE SHARE WITH US ABOUT IT.. :)

Post by claudia »

I am sure Tanya will respond too. But I was there as well. Nancy came and spoke, but due to other committments was not able to attend the morning conference.

I am thrilled at what the group in Cincinnati is trying to do. These kind of conferences, which include parents, are fabulous.

Dr. Gilbert was there and gave two interesting presentations. The two things I really took away from his presentations were these: 1. if a child is a candidate for nerve grafting, do it early. and 2. exercise, exercise, exercise (especially swimming) are absolute musts for our bpi children. He said this a number of times.

We, as parents, we encouraged to ask questions, and all were answered.

When I spoke with Dr. Gilbert privately he told me that he loves talking with the parents. He feels that we ask the best and most probing questions--better than the docs do!!

I truly encourage parents to take advantage of these conferences when they come up. I know that the doctors in Cincinnati hope to do this every other year.

claudia
Karen McClune
Posts: 746
Joined: Wed Sep 10, 2003 4:58 pm

Re: CINCINNATI CONFERENCE...COULD SOMEONE PLEASE SHARE WITH US ABOUT IT.. :)

Post by Karen McClune »

Claudia,

Thank you for your comments about the conference.

Glad it went so well.

Hugs, Karen
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: CINCINNATI CONFERENCE...COULD SOMEONE PLEASE SHARE WITH US ABOUT IT.. :)

Post by Kath »

Claudia
I am glad the conference went so well.
Thanks for sharing your information.

One of the greatest gifts and OBPI child can receive is seeing and playing with other OBPI children.
All of my life, without realizing it, I searched every crowd to see if anyone was like me.
Meeting my OBPI friends was a great moment for me.

Parents meeting other parents who share their concerns, fears and need for sound medical advice must be so great!

Kath adult/robpi
Kath robpi/adult

Kathleen Mallozzi
Jane
Posts: 29
Joined: Wed Oct 04, 2006 11:46 am

Re: CINCINNATI CONFERENCE...COULD SOMEONE PLEASE SHARE WITH US ABOUT IT.. :

Post by Jane »

Thanks to Nancy, Claudia, and Tonya for traveling all the way down to Cincinnati for the BPI support meeting. Nancy answered every parent's questions about what it is like living with BPI and what she recommends that we do as parents - "Love them for who they are - and don't try to make them perfect." Great advice even for our non-BPI kids! Claudia helped address some of the logistics of a support group.

We are starting with about 16 families in this area. Everyone seemed comfortable with the setting and we have already exchanged our first set of emails. Please send me an email if you haven't heard from me and thought you were signed up.

Kath, I appreciate your comment about searching for other BPI kids. I can only imagine what that is like. I was searching for other BPI parents and caregivers, who know what it is like to face the early days, and then the medical and therapy decisions.

Dr. Gilbert was very open and answered even personal questions that parents had about their particular child. I think it is always good to get several perspectives.

Alison gave a good presentation on therapies available, and there was even a grief counselor who spoke and made herself available to us in the future. This is another area which I think is often overlooked.

I invite anyone in this area who is interested in joining to send me an email. We are hoping to plan our next event in the fall, but will be exchanging emails and addresses prior to that time.

Jane
Karen McClune
Posts: 746
Joined: Wed Sep 10, 2003 4:58 pm

Re: CINCINNATI CONFERENCE...COULD SOMEONE PLEASE SHARE WITH US ABOUT IT.. :)

Post by Karen McClune »

Jane,

Thank you for highlighting the conference for us that couldn't be there.

Hugs, Karen
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: CINCINNATI CONFERENCE...COULD SOMEONE PLEASE SHARE WITH US ABOUT IT.. :)

Post by Carolyn J »

Thank You, Claudia and Jane! Your information is very helpful and you all are very lucky to have Cincinnati's Childrens Hospital be there for you. I do hope they will have an Annual Conference, it sounds sooo good.

Thanks again.
HUGS all around, :)'s
Carolyn J
Carolyn J
Adult LOBPI
Keri
Posts: 45
Joined: Mon Jul 18, 2005 10:19 pm

Re: CINCINNATI CONFERENCE...COULD SOMEONE PLEASE SHARE WITH US ABOUT IT.. :

Post by Keri »

I'm not close to Cincinnati (Marietta), but that is where my daughter had her surgery. I would like to be put on the support group email list with a chance of attending sometime!!

hughmongolloyd@yahoo.com

Thanks!!
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: CINCINNATI CONFERENCE...COULD SOMEONE PLEASE SHARE WITH US ABOUT IT.. :

Post by Kath »

Jane
Thanks for all the information on the conference.

I feel it is very important for parents to get immediate counseling.

I know as an adult I actually mourned my losses and then counted my blessings.
After finding ubpn I realized all the things I lost as an obpi and then counted my blessings.
I feel there are times when the children could use a good counselor.
Life is very frustrating for any obpi child.
OBPI children are challenged beyond the ordinary long before they are mature enough to understand.

I also feel that we may become more creative because of it.

Thanks again Jane for bring out this point.

Kath adult/obpi/67
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: CINCINNATI CONFERENCE...COULD SOMEONE PLEASE SHARE WITH US ABOUT IT.. :

Post by Carolyn J »

I say AMEN and ditto to add to everything Kath posted above. :)

HUGS all around,
Carolyn J
Carolyn J
Adult LOBPI
Locked