What this blog is for:
My blog is not to help survivors recover, it is to have the 10 million yearly stroke survivors light fires underneath their doctors, stroke hospitals and stroke researchers to get stroke solved. 100% recovery. The stroke medical world is completely failing at that goal, they don't even have it as a goal. Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It lays out what needs to be done to get stroke survivors closer to 100% recovery. It's quite disgusting that this information is not available from every stroke association and doctors group.
BUT, you are saved by friends you develop like the stroke tribe who tell it like it is but still offer support.
ReplyDeleteThanks Jo
DeleteDean, you just don't know how many times I would have given up up not for y'all.
DeleteWell dunno about my neurologist but my PTs and OTs already said its unlikely we can get you to full recovery. They dont have the tools(protocols) they arent making excuses they just told me bluntly we cant help you. in fact im 27 and they said you might want to brace yourself for a handicapped life.
ReplyDeleteThat said, how do you manage yourself living with one arm? does it work? do you have a job?
The OTs and PTs are not what needs to change, the doctors need to stop the neuronal cascade of death resulting in much less disability allowing the OT and PTs the possibility of using their existing tools to get you quite close to full recovery. My left arm is pretty worthless in helping me do stuff. Being disabled is a state of mind which I refuse to consider. I have a full time programming job.
DeleteLife is good.
How do you program with one hand and not strain your good hand too much? I mean if you do everything with one hand and programmers with 2 hands sometimes already suffer from repetitive strain injury.
ReplyDeleteWell I hunt and peck in typing so you don't get RSI that way. Programmers usually don't need to type very much unless you are doing documentation. We steal code from earlier applications.
DeleteInteresting... I was studying computer science so I guess if I train my left hand to have at least a usable finger I can program with somewhat 2 hands. I just need some index finger stretch and more elbow rotation. I already have index finger flexion and thumb flexion so I have enough function to close zippers. but because of the lack of elbow rotation and wrist its hard to keep these fingers steady for a functional movement. It keeps falling back cause of gravity. though I'm glad that my shoulder works. I was worried because stuff came back really slow. another patient got his entire leg back in 1 month, and his arm came back in the next 6 months, I wish I had that level of recovery, im also 7 months past but with still deficits and I wrote with left now I have to write with right.
ReplyDeleteAnyway have you tried e-stim, like Bioness to get your hand back? Or is it your entire arm that is useless not just the hand?
I don't have a usable finger on my left hand, I can't extend any of them. If I need to hold multiple keys down at the same time and the right hand can't cover them all I put a pencil in my mouth and use that. I have used eStim, got my own Allegro Medical 77715 unit but don't use it anymore. I will have an extremely hard time recovering finger function because that area of the brain is dead and means I somehow need to move control to another area. People who recover early obviously had a lesser amount of damage. My entire arm is worthless, spasticity curls the wrist so trying to carry stuff doesn't work.
DeleteAnd I thought I was unlucky, but you have it worse. I tried manual dry needling so sort of mssage without the needles and also e-stim I barely have spasticity in the arm now I was lucky in that when I lie down my finger spasms go away. So even though Im still paralyzed I have not alot spasticity and can sort of control my arm, though the control gets worser the further down the elbow.
ReplyDeleteMy stroke was in the back of the brain I even had some hemianopsia at first, so I guess I can recover still the motor cortex shouldnt be dead just suffer from learned nonuse. but my PT said its the corticospinal tracts the connections to the spine thats broken. So I need a rerouting of the axons I guess around the dead white matter.
why do you not use e-stim anymore though? How long did you use it before you stopped?
Also about your programming job, does the handicap decrease your earning alot or its not that bad? I am worried because I was not a great programmer before, it took me alot of time to grasp concepts,and now im even slower.
I stopped most if not all specific therapy because work and social life took precedence. After getting divorced and losing my job I had to move to a new area where I knew nobody and getting socially connected requires lots of dinners and drinking. I used eStim maybe 2-3 months. Since most of programming is thinking rather than any physical effort it hasn't decreased my earning potential. Most of my deficits are physical rather than intellectual, although walking and having your bent spastic arm bang into your crotch doesn't do much for you looking smart. Since you need to reroute neurons you might want to look in my index for axonal pathfinding and neuronal sprouting to see if your therapist or doctor thinks any of those might do some good.
ReplyDeleteHmm, your story sounds very inspiring. If you can do it maybe I can do too? One thing I'm wondering though how do you manage your time well enough with a full-time job? Because all the ADLs take up alot of time with just 1 arm. and you are also very active with this blog. How do you find the time? I still do midday naps maybe thats why I feel theres not enough time in a day, do you still take naps? and what aboutfollowing the new developments in programming, like learning a new programming language. Do you even find the time for that? and also like doctor appointments they would mess up your schedule alot because of the job and one cannot drive?
ReplyDeleteI don't do any direct therapy at all because l have a life to live. If something seems like it might be therapeutic during my day I may work on that. Watching movies/TV I open/close the fingers on my spastic hand. I drive so I don't have that problem of time constraints. I haven't seen a doctor in 8 years, they know nothing about rehabilitation, but then therapists don't know anything either. I'm not concerned about new developments in programming, I just need to get thru another 11 years of work and since I have legacy knowledge in COBOL, assembler, mainframe and Smalltalk I can milk those until then since no one is getting trained in them anymore. I drink lots of coffee to force myself awake all day long.
DeleteActually you are not paralyzed. Peter Levine has a good explanation on that. How stroke survivors can be so wrong it hurts them. http://recoverfromstroke.blogspot.com/2009/02/how-stroke-survivors-can-be-so-wrong-it_12.html
DeleteIf you canopen/close your fingers, why do you say your left arm isn't usable like you did earlier? I just discovered I can now close my pinkie too next to opening it, so im expecting it to be usable one day in the future. Is it your spasticity?
ReplyDeleteAnd thats nice, I still have to start my career so Im wondering how well it will go, I guess I should specialize in a language that is here to stay, like C or Java.
Yes, I have bought the book and am moving whatever I have everyday.
Read the Pete Levine article, I have no functional use of my hand.
DeleteWhen I open/close my hand that is with passively moving it with my good hand. Yeah spasticity is stopping me from opening it, I can however somewhat close my hand with all fingers involved, not sure how to get individual fingers to work.
Sohow many cups of coffee do you drink every day and how do you always get the latest updates on stroke?
ReplyDeleteI drink at least 5 cups a day. I created at least a dozen google news feed searches on various search terms and as many stroke related journals as I could find.
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