I have a app. with a specialist tomorrow.(Dec 1) if any of you bpi suffers had to start all over again, what would you ask your doc's? Please read Calling Kath to know my story. Thank you for your time
Luke(LOBPI/adult)
Calling anybody to read this
Re: Calling anybody to read this
Luke,
I would begin by asking him to tell you what is the extent of your injury. Then I'd move into telling him what your current issues are and finding out what movements you are doing that are aggravating the pain you are currently experiencing.
Is there PT or OT that you can do to help? How about a script for some aquatherapy?
You will be able to tell how experienced he is by how well he understands that this injury has both long term effects and that they affect the entire body.
I wish I had known more about movement and balance issues earlier in my life. I would have avoided a lot of the things that I did that brought on pain. We are taught to think 'no pain no gain' and that just doesn't work for those of us with a bpi. We cannot push our weak muscles to overdo, they don't strengthen in the same way that normal muscles do. Instead pushing ourselves can cause harm. On the other hand, we don't want to not use them, or they will grow weaker and contractions can worsen. So the key is the balance.
I know from reading your previous post that you are doing a very physical job, so I would make sure he knows exactly what you are doing on a daily basis.
Hope it goes well. Let us know.
Nancy Birk
UBPN President, LOBPI, 52 years
I would begin by asking him to tell you what is the extent of your injury. Then I'd move into telling him what your current issues are and finding out what movements you are doing that are aggravating the pain you are currently experiencing.
Is there PT or OT that you can do to help? How about a script for some aquatherapy?
You will be able to tell how experienced he is by how well he understands that this injury has both long term effects and that they affect the entire body.
I wish I had known more about movement and balance issues earlier in my life. I would have avoided a lot of the things that I did that brought on pain. We are taught to think 'no pain no gain' and that just doesn't work for those of us with a bpi. We cannot push our weak muscles to overdo, they don't strengthen in the same way that normal muscles do. Instead pushing ourselves can cause harm. On the other hand, we don't want to not use them, or they will grow weaker and contractions can worsen. So the key is the balance.
I know from reading your previous post that you are doing a very physical job, so I would make sure he knows exactly what you are doing on a daily basis.
Hope it goes well. Let us know.
Nancy Birk
UBPN President, LOBPI, 52 years
Re: Calling anybody to read this
Thank you for the reply. It was just in time
Luke
Luke
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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: Calling anybody to read this
Luke, I am thinking about you today. Please let us know how your consultation went.
Hugs,
Carolyn J
Adult LOBPI, age 67 & proud of it!
Hugs,
Carolyn J
Adult LOBPI, age 67 & proud of it!
Carolyn J
Adult LOBPI
Adult LOBPI
Re: Calling anybody to read this
Hi!
This is erica here, I have a ROBPI. I was reading your last post and was cringing. You probably don't want to hear this, but you really should think about finding a new job in or out of UPS. This one will wear out your good arm. Trust me it's easy to do, try wearing a cast on your good wrist from carpal tunnel surgery for two months).
As for questions to ask, check with the doctor to see how many people with BPI's they have actually operated on, and their success rate.
Think of the pros and cons, like what they think will be the final outcome and any movement you may lose (ie. loss of wrist movement if they hook nerves and tendons to your fingers, bypassing the wrist), also will what you gain in movement be adequate.
Don't be afraid to see other doctors. Find out who all is approved by your provider. It takes a long time to find the right one. It took me about 8 years.
Good luck, try not to get discouraged.
erica
This is erica here, I have a ROBPI. I was reading your last post and was cringing. You probably don't want to hear this, but you really should think about finding a new job in or out of UPS. This one will wear out your good arm. Trust me it's easy to do, try wearing a cast on your good wrist from carpal tunnel surgery for two months).
As for questions to ask, check with the doctor to see how many people with BPI's they have actually operated on, and their success rate.
Think of the pros and cons, like what they think will be the final outcome and any movement you may lose (ie. loss of wrist movement if they hook nerves and tendons to your fingers, bypassing the wrist), also will what you gain in movement be adequate.
Don't be afraid to see other doctors. Find out who all is approved by your provider. It takes a long time to find the right one. It took me about 8 years.
Good luck, try not to get discouraged.
erica
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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: Calling anybody to read this
Hi Erica, this post is from 2005... old...
Marieke
Marieke