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How Do You Define Recovery?


LadyRose

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How do you define recovery?

 

Here is the definition by the merrium-webster web site: http://www.merriam-webster.com/dictionary/recovery

 

 

When I was in the hospital just after having had the C.V.A. (stroke),I was told by the medical professionals that although it was not known if I could/would recover at all, the best chance of gaining recovery is in the first three months post stroke involving intense physical therapy due to something called neuro-plasticity, creating new pathways within the brain. After a month in acute, hospital, rehabilitation (rehab), followed by two months in a rehab, nursing home, then able to walk some with assistance (orthosis equipment and a quad cane), and both, dress myelf (mostly, I still cannot put on my socks) and use the toilet unassisted(provided the toilet was adequately accessible and equipped for my disabilities), I apparently, was considered "recovered" enough to be sent home; however, still having paralysis, poor balance, easily fatigued, and needing to require assistance with many daily basic needs and activities, I most certainly had not truly recovered (at least, not how I imagined and hoped). Here I am, nearly two years post-stroke and post-therapies (which I continued on an out-patient basis once returning home until I reached a plateau in my progress in May, 2014) and still disabled and dependent on my husband and son for so many things (I am so grateful for having the best, most caring, loving and devoted husband in the world! But what happens when he is no longer physically unable to assist me?)

 

Anyway, the point that I am trying to make here is...I had believed that if I followed the rules and program of therapies as I had been guided, than one day, I would regain a more full recovery (no more paralysis, a return to the independent way of living life as I had before, etc.); however, I have since come to the conclusion that the purpose of the therapies, for me, were not for attaining a full recovery, but rather a training in discovering to do things in new ways, or rather, learning how to be differently-abled. Learning to do things one-handed and learning to strengthen my torso and carry my weight differently to enable me to walk and sit without falling over from the dead-weight of my paralysis...which acts like an anchor pulling me down on the left side.

Bottom line...I'm fairly certain that a full recovery is not to be achieved by me, especially given my age and the new fact that the joints on my strong side, unaffected by the stroke, are now starting to wear out and pain me.

I also believe that the damage to my brain was more severe than many of the others of whom I've read about on the stroke support forums http://www.strokeboard.net/. Many there have talked about different sensations felt from their paralyzed limbs than that which I have experienced feeling as well as describing higher functioning therapies than those I have been able to perform...my sense is that they retained some neurological signals from the brain which enabled them to perform repetitive tasks thereby allowing the creation of new pathways in their brains and thus recovering prior functions and abilities, where, I seem to have lost all the neurological connections eliminating the chance to reroute my neurological pathways. I cannot lift my left arm, nor move, nor wriggle my fingers, nor can I move my foot, ankle or toes in any way. The only reason that I am able to walk at all is because (1) orthotics and a quad-cane and (2) I've learned to swing my leg around and forward from my hip, I don't have control of my knee at all, I don't bend it and lift upward the way most people do when they walk.

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Rose :

 

I feel the same way about my recovery & I feel therapy helps only if you have movement, all therapy does is adapt to your new body & learn how to do things differently. Though I feel with therapy & doing your daily activities things do become easier. I don't know it is improvement or you get used to doing things differently. though what I have found over time doing those therapy & using your limbs do strengthen so walking becomes easier

 

Asha

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Hi Rose! Haven't "talked" to you in a while! It is amazing to me how much we share and are a like!  As a matter of fact, I know you don't do Face book, I am on there a lot. I belong to a couple of stroke groups and APS groups. (antiphospholipid antibody syndrome) the blood disease that caused my clot then stroke. I just asked a ? similar to your question.

 

Seems like people are always posting about what they do and I can't do any thing like they are doing! Like going to a park and walking a mile! I do well to go down my back steps and 5 feet to get in my van!

 

My 2 year ann. is coming up also (Aug. 16) and I have been told by 6 doctors what I have now is it, things might get a little better but not much.  I don't bend my knee either, I swing out my leg. I have done ankle pumps out the butt, but without my AFO it still rolls like crazy. The only time I don't wear my afo is from bed to my bathroom, like 50 feet and that is getting harder and harder, my toes are spastic, I have been having my husband or one of my girls dress my lower extremeties  while I sit on the bed.

 

I can lift my left arm, I can open and close my hand, but what good does that do?? It is still not functional and can't really do anything.

 

My left side is still numb, or like I call it--dead. It has no sensation, no cold or hot feelings, anything registers as light pain.

 

I am some mobile but at home I am in my wheelchair most of the time. I wash dishes, sweep the kitchen cook a little, etc all from the wheelchair.

 

I think therapy is just for movement and to get us "adjusted" to our stroke bodies and what we have to live with.

 

Lately I have just tried to work on acceptance and thinking it is what it is.

 

Sorry I couldn't be more help, but I just had to respond because you sound so much like me! 

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Hi Rose! Haven't "talked" to you in a while! It is amazing to me how much we share and are a like!  As a matter of fact, I know you don't do Face book, I am on there a lot. I belong to a couple of stroke groups and APS groups. (antiphospholipid antibody syndrome) the blood disease that caused my clot then stroke. I just asked a ? similar to your question.

 

Seems like people are always posting about what they do and I can't do any thing like they are doing! Like going to a park and walking a mile! I do well to go down my back steps and 5 feet to get in my van!

 

My 2 year ann. is coming up also (Aug. 16) and I have been told by 6 doctors what I have now is it, things might get a little better but not much.  I don't bend my knee either, I swing out my leg. I have done ankle pumps out the butt, but without my AFO it still rolls like crazy. The only time I don't wear my afo is from bed to my bathroom, like 50 feet and that is getting harder and harder, my toes are spastic, I have been having my husband or one of my girls dress my lower extremeties  while I sit on the bed.

 

I can lift my left arm, I can open and close my hand, but what good does that do?? It is still not functional and can't really do anything.

 

My left side is still numb, or like I call it--dead. It has no sensation, no cold or hot feelings, anything registers as light pain.

 

I am some mobile but at home I am in my wheelchair most of the time. I wash dishes, sweep the kitchen cook a little, etc all from the wheelchair.

 

I think therapy is just for movement and to get us "adjusted" to our stroke bodies and what we have to live with.

 

Lately I have just tried to work on acceptance and thinking it is what it is.

 

Sorry I couldn't be more help, but I just had to respond because you sound so much like me! 

With regards to your ability to lift your arm and open and close your hand:

Well, I'm no expert, but I would think that this is enough to allow you to practice meaningful movements and tasks, such as brushing your hair, reaching for, grasping and lifting of a drinking vessel, etc., and by doing this over-and-over ad nauseam,  you can create new pathways in your brain to make the movements second nature, like a child learning new motor skills.

 

I'd be happy to have even those limited movements, at least then I would probably be able to hug my husband and son or at least have some hope that I could do that again with hard work.

 

I'm at the point of learning acceptance too but my husband and son both refuse to believe that there's no more that I can do  and explaining myself to hem only upsets all of us to the point of exacerbation!  I'm so sad about my life as it is. :-(  If there were experimental surgery to repair my brain damage, I'd probably volunteer to try it... What I wouldn't give to just have a little spontaneity back in my life and to give my husband a break from all his stresses.  Currently, I just feel like a waste of space and resources.

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In other types of injuries 'recovery' means for them that they work and work and recover their previous abilities.   Like if they had a bad break to their leg, they would work on that... but notice it was actually their LEG, not their brain.    There is the difference.    And also the fact that an injury to the brain can hit more than just a leg, but affect so many functions.   In Bob's therapy, he certainly wanted to recover as much of the things that were lost as possible, BUT, it's a lot about learning to work with what you have.  I will say that it is thru the learning to do things that we can often stimulate MORE movement - so learning new ways works hand in hand with getting more function.   The recovery is as much emotional/mental as physical.   It is a matter of getting yourself to a place where you can enjoy life again.   Bob can't really DO anything without me.    But we definitely have a good life together and enjoy the days we have.   We still work on therapies at home, and it is the difference between maintaining and possible improving vs going downhill to nothing.   So the mental outlook is just as important as the physical, if a person will 'recover' the ability to enjoy their life.

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SandyCaregiver:  I agree, attitude is everything and I'll be the first to admit that mine is not good..but that's just who I am... however, itdoes seem that you to got the point I was trying to make, that is, full recovery would mean (to me) being able to return to doing everything that I once could do, but I think with brain injury, recovery often means  doing things in a different way and finding pleasure or joy, where one can.  Thak you for your comment!

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I understand because I am at the year mark and I am disappointed that I am not able to do what I did prestroke.  I feel selfish when I am told that I was lucky and others have it worse. That never stops me from feeling disappointed though even if that is true because I would like to be back to normal.  I don't apologize for being grief stricken that my world was shattered suddenly just one day work up BAM gone and I have physical defects now that no matter how I dress the up in words like challenged rather than disabled, the fact is that I don't get to drive the car I love and I don't get to work at the job I love and I can't get down the stairs alone. But sure I celebrate that I don't need the help that others do, and that I am able to walk, and that things that could be damaged and also gone have been left to me.  I guess I do have gratitude but I also have a screaming mean heartache too that I don't silence now because it is part of the reason I keep hoping and keep living with a purpose to recover something more just a little bit more.  Yes Attitude is everything. I have so many attitudes. Just try and catch me on a good one.  But then again even my bad ones seem to be useful.  I have a shadow side of me too and that has to be expressed in a healthy way.  I don't think I will ever look at a picture of myself pre strok e, without feeling that loss ===all the losses that stroke has brought.  Sure there is always some good but honestly I would prefer to be the person I see in the picture.  I think that even accepting that ok this is my reality now ==I will always want to turn back the clock.  I will always want to recover to the point of where I can be her again.  It may not be possible so then I am sad and disappointed.  Then I choose to react with dealing with the second chance I am given and live life's precious moments I almost missed because I know this is time I almost didn't get to have.  I can feel all of these things all at once. I don't have be happy or sad. I manage to do both really well.  I know that it is a balance and I don't have to feel guilty for anything I feel now. I can be complicated.  So I understand. 

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