I am the mother of a 17-month-old, Aria, with a bilateral OBPI - her right arm's being tremendously more affected than her left.
While she has somewhat limited movement with her right arm (deltoid to 90 degrees, biceps to 75 degrees, reasonable triceps, absolutely no external rotation, wrist or thumb extension), she has excellent feeling. I have tested this by running feathers and other light items softly down her arm while she is distracted and looking in another direction. She always turns to see what has tickled her.
However, even though she could use her right arm to an extent, and even though she has excellent feeling in it, I find she often forgets about it. She'll happily use it when I ask her to, or when her left arm is occupied. But otherwise, it usually hangs limp at her side.
As adults, do you still "forget" your injured arms? Other than stimulation through textures and massage, and asking Aria to use her right arm, do you have any advice about how I could stimulate her to use that arm more?
Thank you for your help!!!!!
Mica
Do you think to use your affected arm?
Re: Do you think to use your affected arm?
I use my affected arm all the time. I'm typing with my index finger right now!! However, I definitely use my unaffected arm for motions that need strength and range.
I have reduced strength in the bicep, tricep, and deltoid that limits function but I have good hand/finger function that allows me to grasp things to carry and hold on to (like a cup). I just can't lift anything above head level.
Regarding stimulation to help her, how about simple games like putting objects into a box? You might ask your question on the General Board to find help from other parents.
John P.
ROBPI for 68 years
I have reduced strength in the bicep, tricep, and deltoid that limits function but I have good hand/finger function that allows me to grasp things to carry and hold on to (like a cup). I just can't lift anything above head level.
Regarding stimulation to help her, how about simple games like putting objects into a box? You might ask your question on the General Board to find help from other parents.
John P.
ROBPI for 68 years
- 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: Do you think to use your affected arm?
I tend to not use it even when I can. I have excellent use of it, but things are just easier when I use my right arm only sometimes... Like things I could do 2 handed, I do one handed (if possible). Not sure why, I guess I always did that and it's continued.
I use both hands to type most of the time, but eating I tend to not cut my food with a knife if I can do it with the side of my fork, so I don't use my LOBPI side to use the knife if it can be helped.
Putting dishes away in the cupboard I tend to use only my right arm unless it it's too heavy and need both hands...
I guess just try to encourage her to use both, even if it sounds like you are nagging.. I figure eventually she will use both out of habit, hopefully!
Make games out of it as John suggested.
Good luck!
Marieke (32, LOBPI)
I use both hands to type most of the time, but eating I tend to not cut my food with a knife if I can do it with the side of my fork, so I don't use my LOBPI side to use the knife if it can be helped.
Putting dishes away in the cupboard I tend to use only my right arm unless it it's too heavy and need both hands...
I guess just try to encourage her to use both, even if it sounds like you are nagging.. I figure eventually she will use both out of habit, hopefully!
Make games out of it as John suggested.
Good luck!
Marieke (32, LOBPI)
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- 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: Do you think to use your affected arm?
I have always forgotten to use my robpi arm. Unless I made a decision to use it... it just hangs.
When I was young my mother assigned tasks to my robpi.
I can type with both hands but can't lift a cup to my mouth and have limited motion.
When I learned to iron she would only let me iron right handed. It was hard but that is what I do to this day.
I had a very hard time using my arm and hand and it's still very weak but forcing me to use robpi arm/hand for some things really helped. The only time I use my right hand is when I preform a task it was assigned.
One of the doctors at camp explained that we have had such a brain disconnect to our arms we just forget to use it.
I am using the Myotrac Semg and find that it's like making a new connection to some muscles. I know she is not old enough yet to assign tasks but she can be talked into it when she is more mature. I always referred to my arm as a decoration or a hanger...
I will not put my hand/arm out to save myself if I fall and I guess it's because my brain forgot I had an arm.
Kath robpi/adult
I had to correct my sentence... I left a few words out of my sentence. It changed the whole meaning. I put them in bold just to show my correction.
Message was edited by: Kath
When I was young my mother assigned tasks to my robpi.
I can type with both hands but can't lift a cup to my mouth and have limited motion.
When I learned to iron she would only let me iron right handed. It was hard but that is what I do to this day.
I had a very hard time using my arm and hand and it's still very weak but forcing me to use robpi arm/hand for some things really helped. The only time I use my right hand is when I preform a task it was assigned.
One of the doctors at camp explained that we have had such a brain disconnect to our arms we just forget to use it.
I am using the Myotrac Semg and find that it's like making a new connection to some muscles. I know she is not old enough yet to assign tasks but she can be talked into it when she is more mature. I always referred to my arm as a decoration or a hanger...
I will not put my hand/arm out to save myself if I fall and I guess it's because my brain forgot I had an arm.
Kath robpi/adult
I had to correct my sentence... I left a few words out of my sentence. It changed the whole meaning. I put them in bold just to show my correction.
Message was edited by: Kath
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: Do you think to use your affected arm?
I really appreciate your help!!!
Thank you for the ideas and support! This injury is so incredibly unfair. It's nice to have a community of people who are willing to help me help my little girl cope with it.
Again, thank you.
Thank you for the ideas and support! This injury is so incredibly unfair. It's nice to have a community of people who are willing to help me help my little girl cope with it.
Again, thank you.
Re: Do you think to use your affected arm?
One thing we did with joshua when he was young was to have separate toys for his left (affected) hand. I think it helped!
Kate
Kate
Re: Do you think to use your affected arm?
Kath,
I knew what you were saying, even before you edited.
Thank you.
I knew what you were saying, even before you edited.
Thank you.
Re: Do you think to use your affected arm?
Kate,
Daniel and I really liked your plastic spoons idea. (We read it in another post.)
I'm open to anything and everything to help Aria!!!
Daniel and I really liked your plastic spoons idea. (We read it in another post.)
I'm open to anything and everything to help Aria!!!
-
- 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: Do you think to use your affected arm?
No, hardly ever. I never did. Now, since finding UBPN etc. I purposely try to remember to use it as much as I can with certain tasks..not anywhere around my hair,'tho!!..lol.
HUGS,
Carolyn J
LOBPI/69
HUGS,
Carolyn J
LOBPI/69
Carolyn J
Adult LOBPI
Adult LOBPI
Re: Do you think to use your affected arm?
I grew up in a family of dancers and found that even though I may have looked a bit different to everyone else with my BPI arm, that activity of using my arm each week, however little, certainly helped me to maintain my range of motion (although that's still fairly limited. And since I've stopped dancing and playing sports I have noticed that the amount of strength and rotation that I have seems to be diminishing from lack of use.
I can strongly recommend a regular sport or dancing - it's more fun than doing just the exercises that the physio gives you and having that regular social interaction when you're a child who is a little bit different is also a plus!
Good Luck!
Lacey, 27yo ROBPI
I can strongly recommend a regular sport or dancing - it's more fun than doing just the exercises that the physio gives you and having that regular social interaction when you're a child who is a little bit different is also a plus!
Good Luck!
Lacey, 27yo ROBPI