When is what you have functionally enough? Is this something you are always looking to improve on or do you eventually hit a point where it feels like you have run out of options and have to accept that what you have is what you get, there isn't anything more to try.
A lot of this is hitting me as I am aging out of the Shriners system, I only have a year and 5 months let before I am too old. I still will have a great doctor who works at Mayo so I could see him there but, I will have to pay for any thing there and with college, thats not a reality.
My arm usually does not bother me but today it is getting me down. It seems like I try so much in therapy and grantid I have come a very long way from where I was 2 years ago, it kinda feels like I am sitting still now, not gaining and only losing when I stay up too late doing homework. I never used to notice a difference in activity when I was tired and now I am seeing that when I dont get 8 hours of sleep, my functionality goes down.
Is it ever "ok" that you can't do something you want very much to do? I really dont want that much from my arm, I just really want to do two things and I feel like I am running out of options to accomplish them.
Thanks,
Amy 19 ROBPI from MN
another question
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hope16_05
- Posts: 1670
- Joined: Tue Jul 01, 2003 11:33 am
- Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
- Location: Minnesota
- Contact:
another question
Amy 28 years old ROBPI from MN
Re: another question
What are these two things you want to do? I do believe in therapy in that it does help gain more function out of an OBPI arm, but there is just a wall your going to hit. I am in PT right now and I always have to remind my PT that my arm can only do so much! No matter how hard I try. Anyway I don't think your alone in facing limitations.
Becky
Becky
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hope16_05
- Posts: 1670
- Joined: Tue Jul 01, 2003 11:33 am
- Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
- Location: Minnesota
- Contact:
Re: another question
I want to be able to climb a rock wall and I want to put my hair up with out having to lay down.
I totally believe in therapy, I have gained incredible function over the last two years. Its just that my triceps are so weak and dont seem to be responding to therapy. I think thats really the only area I have not made any progress in. I am so close but cant seem to make it over my road block.
I know that we all face our own limitations injury or no injury, we all have limitations but at what point is what you have enough?
Amy
I totally believe in therapy, I have gained incredible function over the last two years. Its just that my triceps are so weak and dont seem to be responding to therapy. I think thats really the only area I have not made any progress in. I am so close but cant seem to make it over my road block.
I know that we all face our own limitations injury or no injury, we all have limitations but at what point is what you have enough?
Amy
Amy 28 years old ROBPI from MN
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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: another question
Amy,
For me it was when they told me that there was nothing else they could do. I wanted to be able to reach the top of my head/raise my arm up above shoulder level actively and not just passively. I can sort of by throwing it there or placing it with the other hand but that's it.
I think you should talk to someone ASAP to find out if there is anything more they can do (surgiaclly) and if so, weigh the pros and cons. There may be something they can do, but it may not be worth it...
Marieke
Good luck, it's a tough call, but one you have to make in the end.
For me it was when they told me that there was nothing else they could do. I wanted to be able to reach the top of my head/raise my arm up above shoulder level actively and not just passively. I can sort of by throwing it there or placing it with the other hand but that's it.
I think you should talk to someone ASAP to find out if there is anything more they can do (surgiaclly) and if so, weigh the pros and cons. There may be something they can do, but it may not be worth it...
Marieke
Good luck, it's a tough call, but one you have to make in the end.
Re: another question
Amy:
You've posed a tough and valid question. Looking back, I think that I accepted what I had when I was in my 20's. My life had moved on to college, a career, and family. My arm just didn't seem important relative to the other things going on. I made adjustments that enabled me to do what I wanted to do. Like you, I had to improvise because of the limited range of motion I have. Also, I didn't seek out medical advise and consequently, wasn't aware of any other therapy or surgery that may have helped me.
Forty years later, at Camp 2003, a doctor told me that surgery would allow me to raise my arm above my head. Wow, I could reach up and change a light bulb right handed. However, another doctor looked at me and commented "You seem to be doing OK. Are you satisfied with what you have?" Crunch time.
That is probably the question you need to ask yourself. Can you lead a productive life with what you have?
John P.
You've posed a tough and valid question. Looking back, I think that I accepted what I had when I was in my 20's. My life had moved on to college, a career, and family. My arm just didn't seem important relative to the other things going on. I made adjustments that enabled me to do what I wanted to do. Like you, I had to improvise because of the limited range of motion I have. Also, I didn't seek out medical advise and consequently, wasn't aware of any other therapy or surgery that may have helped me.
Forty years later, at Camp 2003, a doctor told me that surgery would allow me to raise my arm above my head. Wow, I could reach up and change a light bulb right handed. However, another doctor looked at me and commented "You seem to be doing OK. Are you satisfied with what you have?" Crunch time.
That is probably the question you need to ask yourself. Can you lead a productive life with what you have?
John P.
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rachelcasa
- Posts: 729
- Joined: Mon Apr 21, 2003 11:45 pm
Re: another question
John,
Well said. I completely agree with you. I also (I'm sure with many adults) tend to get a bit frustrated with the whole arm thing. However, you have to look and be thankful for that of which you can do.
When I get a bit down and depressed all I have to do is think to myself at least I am not quadriplegic and at least I have my health otherwise and try to look at the positives. Don't get me wrong though, the negatives set in quite a lot but in reality I also know I could have it a lot worse off as some do.
*HUGS*
Hang in there Amy!! Keep up the great work in school too. You will be great at what you do.
Rachel
Well said. I completely agree with you. I also (I'm sure with many adults) tend to get a bit frustrated with the whole arm thing. However, you have to look and be thankful for that of which you can do.
When I get a bit down and depressed all I have to do is think to myself at least I am not quadriplegic and at least I have my health otherwise and try to look at the positives. Don't get me wrong though, the negatives set in quite a lot but in reality I also know I could have it a lot worse off as some do.
*HUGS*
Hang in there Amy!! Keep up the great work in school too. You will be great at what you do.
Rachel
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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: another question
Amy,
I agree with EVERYTHING John said so well. We each have our very OWN "Crunch Time". That point in time will come for you too. It doesn't seem to me that you are there yet, BUT I am glad you are "ruminating" about it. That is better than being in Denial.
It seems like you've got a little "wiggle" time yet. You are very good at making the most of it, Amy.
((((HUGS)))),
Carolyn J
PS...have you taken a "break" from therapy lately? It seems like you are going "full tilt" on everything....
I agree with EVERYTHING John said so well. We each have our very OWN "Crunch Time". That point in time will come for you too. It doesn't seem to me that you are there yet, BUT I am glad you are "ruminating" about it. That is better than being in Denial.
It seems like you've got a little "wiggle" time yet. You are very good at making the most of it, Amy.
((((HUGS)))),
Carolyn J
PS...have you taken a "break" from therapy lately? It seems like you are going "full tilt" on everything....
Carolyn J
Adult LOBPI
Adult LOBPI
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hope16_05
- Posts: 1670
- Joined: Tue Jul 01, 2003 11:33 am
- Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
- Location: Minnesota
- Contact:
Re: another question
Thanks every one in your responses. I am feeling better today, I guess it was just a hard weekend.
Carolyn, you are totally right, I am trying to go full force on every thing, probably not the best option but its the one I have right now. I havent had a real break from therapy in over a year. I cant really have a break from all my therapy. If I take a break from it I lose the ability to do my hair. It only takes a couple weeks to lose the ability to do my hair. I do need a break but I cant have one. So I guess I just need to manage every thing else a bit better.
Unfortunately, there are no surgical options left for me due to a surgery I had when I was ten. I feel like I wasted my one chance because I never had therapy after that surgery. Not much I can do about that now.
I am very pleased with the recovery that I have, I just want more. To do things with both hands with out having to worry that I will be in pain if I do it longer than 10 to 15 minutes.
I will just have to work harder! So thats what I will do, I am not even close to ready to accept that what I have is as good as it gets.
Thanks again,
Amy 19 ROBPI from MN
Carolyn, you are totally right, I am trying to go full force on every thing, probably not the best option but its the one I have right now. I havent had a real break from therapy in over a year. I cant really have a break from all my therapy. If I take a break from it I lose the ability to do my hair. It only takes a couple weeks to lose the ability to do my hair. I do need a break but I cant have one. So I guess I just need to manage every thing else a bit better.
Unfortunately, there are no surgical options left for me due to a surgery I had when I was ten. I feel like I wasted my one chance because I never had therapy after that surgery. Not much I can do about that now.
I am very pleased with the recovery that I have, I just want more. To do things with both hands with out having to worry that I will be in pain if I do it longer than 10 to 15 minutes.
I will just have to work harder! So thats what I will do, I am not even close to ready to accept that what I have is as good as it gets.
Thanks again,
Amy 19 ROBPI from MN
Amy 28 years old ROBPI from MN