Amanda from Kansas
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AlannahD
- Posts: 234
- Joined: Mon May 09, 2005 3:55 pm
- Injury Description, Date, extent, surgical intervention etc: 7-year-old granddaughter, LOBPI
Amanda from Kansas
Amanda, where are you at in Kansas (From another Kansan) C Bearly
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LOBI_Amanda
- Posts: 17
- Joined: Mon Jul 18, 2011 7:23 pm
- Injury Description, Date, extent, surgical intervention etc: LOBI (1983)...No surgies yet....some physical therapy when younger....and recently began having horrible neck/back pain that radiats down BPI arm. Also starting to wake up with some numbness in various fingers and thumbs...seems to be no pattern.
Re: Amanda from Kansas
South of Kansas city about an hour. Where are you located?
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AlannahD
- Posts: 234
- Joined: Mon May 09, 2005 3:55 pm
- Injury Description, Date, extent, surgical intervention etc: 7-year-old granddaughter, LOBPI
Re: Amanda from Kansas
I am in Overland Park - my granddaughter is almost 9 and is LOBPI and they live in Gardner - would you like to meet some time? Alannah likes meeting others with the same injury as her!
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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: Amanda from Kansas
Camille,
Can you post this on the "General Message Board" because there are children with OBPI's around Kansas City too as I recall. Some parents only go to the "General Message Board" especial new families to UBPN.
HUGGZ,
Carolyn J
LOBPI/73
Can you post this on the "General Message Board" because there are children with OBPI's around Kansas City too as I recall. Some parents only go to the "General Message Board" especial new families to UBPN.
HUGGZ,
Carolyn J
LOBPI/73
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LOBI_Amanda
- Posts: 17
- Joined: Mon Jul 18, 2011 7:23 pm
- Injury Description, Date, extent, surgical intervention etc: LOBI (1983)...No surgies yet....some physical therapy when younger....and recently began having horrible neck/back pain that radiats down BPI arm. Also starting to wake up with some numbness in various fingers and thumbs...seems to be no pattern.
Re: Amanda from Kansas
I live in Garnett....but work at Shawnee Mission Medical Center. I am in Overland Park Monday thru Friday. I past Gardner everyday. I agree it is nice to meet people with your injury, after all not everyone understands unless they know about it.
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AlannahD
- Posts: 234
- Joined: Mon May 09, 2005 3:55 pm
- Injury Description, Date, extent, surgical intervention etc: 7-year-old granddaughter, LOBPI
Re: Amanda from Kansas
What a small world! My oldest daughter lives in Richmond, KS - I am sure you know where that is - they live in the country off Cloud Road! She and I both used to work at SMMC - she is a nurse and works both in Iola at the hospital and at the nursing in Richmond.
A I said my granddaughter with the injury belongs to my youngest daughter and they live in Gardner - let me know when we could possibly meet up - Do you have children of your own yet? CMB
A I said my granddaughter with the injury belongs to my youngest daughter and they live in Gardner - let me know when we could possibly meet up - Do you have children of your own yet? CMB
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LOBI_Amanda
- Posts: 17
- Joined: Mon Jul 18, 2011 7:23 pm
- Injury Description, Date, extent, surgical intervention etc: LOBI (1983)...No surgies yet....some physical therapy when younger....and recently began having horrible neck/back pain that radiats down BPI arm. Also starting to wake up with some numbness in various fingers and thumbs...seems to be no pattern.
Re: Amanda from Kansas
CMB-
I would love to meet your granddaughter and her family. I wish I had someone older to look up to when I was younger and stuggling with my injury and limitations it caused. Friday nights and weekends tend to be better days as I work all day plus and hour drive each way. I have a 2.5 yr old who goes to daycare in Kansas City which makes week nights hard. By the time we get home, eat supper, and have a bath it is time for bed to do it all over again. My weekends are pretty open right now, so let me know what works best for you guys.
Looking forward to meeting
-Amanda
I would love to meet your granddaughter and her family. I wish I had someone older to look up to when I was younger and stuggling with my injury and limitations it caused. Friday nights and weekends tend to be better days as I work all day plus and hour drive each way. I have a 2.5 yr old who goes to daycare in Kansas City which makes week nights hard. By the time we get home, eat supper, and have a bath it is time for bed to do it all over again. My weekends are pretty open right now, so let me know what works best for you guys.
Looking forward to meeting
-Amanda
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AlannahD
- Posts: 234
- Joined: Mon May 09, 2005 3:55 pm
- Injury Description, Date, extent, surgical intervention etc: 7-year-old granddaughter, LOBPI
Re: Amanda from Kansas
Amanda - where does your little one stay - I actually live very near SMMC - if he is close maybe we could plan pizza on a Friday evening at my place and have Alannah and her mother there too - my daughter is divorced and has her two kids every other weekend - what do you think? Camille B
or we could all meet in Gardner some time when she has her kids!
or we could all meet in Gardner some time when she has her kids!
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LOBI_Amanda
- Posts: 17
- Joined: Mon Jul 18, 2011 7:23 pm
- Injury Description, Date, extent, surgical intervention etc: LOBI (1983)...No surgies yet....some physical therapy when younger....and recently began having horrible neck/back pain that radiats down BPI arm. Also starting to wake up with some numbness in various fingers and thumbs...seems to be no pattern.
Re: Amanda from Kansas
Camille-
Leave me your email and I will contact you through there. I also have my son every other weekend. He is really close to work so, either would work fine.
-Amanda
stanleyars@gmail.com
Leave me your email and I will contact you through there. I also have my son every other weekend. He is really close to work so, either would work fine.
-Amanda
stanleyars@gmail.com
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MiMi Johnnye
- Posts: 4
- Joined: Mon Dec 05, 2011 2:53 pm
- Injury Description, Date, extent, surgical intervention etc: My son has a BPI from birth 29 years ago. I am a massage therapist and I am trying to help elliminate his pain and gain back ROM and strength.
Re: Amanda from Kansas
Hi Amanda,
My son, Glenn, has an OBPI. He is 29 years old, and well, 29 years ago we were given poor medical advice (we were advised to immobilize his arm and hope the brachial plexus would heal). That did not happen. So, he has just lived with the injury for 3 decades, but in the past few years the 'burners & stingers' have reached an unbearable condition. I became a massage therapist 6 years ago (wish I knew 29 years ago what I know now). He has agreed to move back home temporarily for me to do therapy on him. We have been doing various treatments (stretching, deep tissue, isometric contraction, etc) and had a little success. His passive range of motion has increased, and some of his pain has decreased, very little strength has been regained. We are 2 months into therapy.
I am interested in what kind of success you have found through Mayo Clinic. Are they using electric stims? TENS? TES? I am not trying to be nosy, I just am not sure how to continue.
My son, Glenn, has an OBPI. He is 29 years old, and well, 29 years ago we were given poor medical advice (we were advised to immobilize his arm and hope the brachial plexus would heal). That did not happen. So, he has just lived with the injury for 3 decades, but in the past few years the 'burners & stingers' have reached an unbearable condition. I became a massage therapist 6 years ago (wish I knew 29 years ago what I know now). He has agreed to move back home temporarily for me to do therapy on him. We have been doing various treatments (stretching, deep tissue, isometric contraction, etc) and had a little success. His passive range of motion has increased, and some of his pain has decreased, very little strength has been regained. We are 2 months into therapy.
I am interested in what kind of success you have found through Mayo Clinic. Are they using electric stims? TENS? TES? I am not trying to be nosy, I just am not sure how to continue.