Tampa FL Support Groups... Anything.....

You are welcome to post information here about planned BPI picnics, gatherings and symposia.
Locked
EzekielsMomAlex
Posts: 1
Joined: Fri Jun 21, 2013 7:36 pm
Injury Description, Date, extent, surgical intervention etc: My son Ezekiel has had his since birth 9-27-11

Tampa FL Support Groups... Anything.....

Post by EzekielsMomAlex » Fri Jun 21, 2013 7:58 pm

My name is Alex, me and my boyfriend Israel, have a wonderful son Ezekiel who has BPI. I would love to talk/meet up with other parents in my area. My son is 21 months old now. No Surgery so far. Going to see about a muscle/ tendon transfer when he is two... comming up very soon... SCARYYYY!!!!

emilyalberger
Posts: 51
Joined: Tue Mar 29, 2011 5:53 am
Injury Description, Date, extent, surgical intervention etc: left arm bpi since birth,can only bend my elbow mostly ne feeling n when i get it its not the right sensation

Re: Tampa FL Support Groups... Anything.....

Post by emilyalberger » Tue Jul 30, 2013 6:02 pm

I live in the tampa area. im an adult with bpi but I have a 4yr old daughter he could play with while we chat.

stunter78

Re: Tampa FL Support Groups... Anything.....

Post by stunter78 » Fri Oct 11, 2013 11:29 am

Im and adult BPI as well since 2004. I live in lakeland but work in the tampa area. I had nerve transfers, I recommend them. But I dont recommend any fusion serguries. I still ride motorcycles, build tuner cars, drive a manual transmission, ect... The doctors recommended that I get a shoulder and wrist fusion and a tendon transfer. If I would have, I would not be able to do any of the things I said above. The best thing to do is to work on learning techniques to help your child learn to live with his disability. And dont think of it as a disability, its just that your child sometimes has to do things a lil differently. Myself, most people dont even know that Im disabled and those that do completely forget about it.

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: Tampa FL Support Groups... Anything.....

Post by Carolyn J » Sat Oct 12, 2013 11:11 am

Good advise "stunter"! ... "The best thing to do is to work on learning techniques to help your child learn to live with his disability. And dont think of it as a disability, its just that your child sometimes has to do things a lil differently. Myself, most people dont even know that Im disabled and those that do completely forget about it."

"gramma" Carolyn J 8-)
LOBPI/75

Locked

Who is online

Users browsing this forum: No registered users and 1 guest