OBPI support group
OBPI support group
My grandson is 2 1/2 years old and has OBPI. My daughter and I have been looking for a support group here in San Antonio, Texas or in the vicinity for a while now and can't find one. Does anyone know of anybody we can talk to about what to expect as my grandson gets older? He is able to move his left arm a bit but has no movement in his wrist or hand but he's going to therapy 3 times a week. Any help will be appreciated.
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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: OBPI support group
You can also ask us on this board if you have specific questions/concerns.
marieke 33, LOBPI
marieke 33, LOBPI
Re: OBPI support group
My grandson is 3 now and potty trained. He is unable to pick up his pants after he goes to the bathroom. Is there anything we can do to make it easier for him? He is able to move his left arm but has no movement or strength on his hand or wrist. He tries really hard to pick up his pants with just his right hand but can't do it. Any suggestions would be appreciated. Thanks.
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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: OBPI support group
Hello MOMO5,
WELCOME to our UBPN FAMILY. Every question is welcome.
I suggest ELASTIC WAIST pants ONLY and help him to learn pull up one side at a time; however it would be VERY GOOD to help strenthen his BPI hand & arm if he does learn to try use that too at the same time his "good" hand is pulling up that side of his pants AND "use both hands to pull up on his "weaker" side.
Any toys that can be used to entice him to strenghen his "squeeze/grasp" on the injured hand , I do suggest...MAKE IT FUN & he won't tell it's good therapy...
Carolyn J
LOBPI adult/71
ps....there is NO such thing as a dumb question on ANY message forum board & evberyone is welcome on ALL message forums.
Message was edited by: Carolyn J
WELCOME to our UBPN FAMILY. Every question is welcome.
I suggest ELASTIC WAIST pants ONLY and help him to learn pull up one side at a time; however it would be VERY GOOD to help strenthen his BPI hand & arm if he does learn to try use that too at the same time his "good" hand is pulling up that side of his pants AND "use both hands to pull up on his "weaker" side.
Any toys that can be used to entice him to strenghen his "squeeze/grasp" on the injured hand , I do suggest...MAKE IT FUN & he won't tell it's good therapy...
Carolyn J
LOBPI adult/71
ps....there is NO such thing as a dumb question on ANY message forum board & evberyone is welcome on ALL message forums.
Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
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Judy-T
- Posts: 557
- Joined: Fri Nov 02, 2001 11:59 am
- Injury Description, Date, extent, surgical intervention etc: Right arm OBPI One surgery at age 40 Ulnar nerve retransposition
- Location: Florida
Re: OBPI support group
Hi,
If you go to our resource page you will find a registry list . I am pasting it here for you. This is what I found for San Antonio.http://ubpn.org/Registry/listRegist ... an+Antonio
Judy@ubpn.org
Within Reach
UBPN Board of Directors
If you go to our resource page you will find a registry list . I am pasting it here for you. This is what I found for San Antonio.http://ubpn.org/Registry/listRegist ... an+Antonio
Judy@ubpn.org
Within Reach
UBPN Board of Directors
Re: OBPI support group
Hi Carolyn and thanks for your reply. We do have him in elastic waist pants and we try to get him to use his affected hand but it's still quite weak. He is going to therapy 3 times a week. I worry about him starting pre-school next year and having to do things mostly on his own like going to the bathroom, carrying his food tray, etc. Hopefully by that time he'll have a bit more strength on his hand. We'll keep praying for that.
Re: OBPI support group
Hi Judy-T.
Thank you for sending me that information. I'll pass it on to my daughter so she can contact the 2 people from San Antonio on the list. I'm awfully glad I found this site, it's been very, very helpful and the people are great. I'll keep in touch and let you know what happens. Again, thanks.
Thank you for sending me that information. I'll pass it on to my daughter so she can contact the 2 people from San Antonio on the list. I'm awfully glad I found this site, it's been very, very helpful and the people are great. I'll keep in touch and let you know what happens. Again, thanks.
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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: OBPI support group
Hi MoMo5
I use both hands to pull on slacks but can only use my thumb and index on my right hand. When I was small I use to pull up one side at a time with my unaffected arm. But in time was pushed to use both hands as best as I could.
It's best to get a child to do as many things as possible using both hands. I feel that even rom should be done on both arms. It may help the brain to reconnect to our injured side.
The unaffected arm should be exercised because it is restricted most of the time to the length of the injured arm. This, over time, for some of us causes contractures.
Kath robpi/adult
I use both hands to pull on slacks but can only use my thumb and index on my right hand. When I was small I use to pull up one side at a time with my unaffected arm. But in time was pushed to use both hands as best as I could.
It's best to get a child to do as many things as possible using both hands. I feel that even rom should be done on both arms. It may help the brain to reconnect to our injured side.
The unaffected arm should be exercised because it is restricted most of the time to the length of the injured arm. This, over time, for some of us causes contractures.
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi