thephoenix

thanks for your comment Imso guilty of this but Im focused on not falling into the trap of using myr ight hand only. The ' requests' are everything. that's why constrint induced therapy (CIT) where the unfected hand is restrained so it can't be used works. cuz if you're tied up you've got no choie but to try and use the weak limbs and after a week or 2 or CIT studies show those patients recover faster. than patients who did not have their normal limbsrestrained. I'd really go uts if I couln't use my right hand but I've got to get away from using it so much. even if I have to lift myleft arm into position with my right it's worth it. like when my PT used to move my left leg for me...all those steps were still worth it even though I didn't do them on myown. as long as I'm trying & requesting movements of my brain it will come )

hello All, I'm a 38 year old woman who is a stroke survivor. last year at the end of April I had a pretty large right midle cerebral artery stroke. I'm also a vascular(stroke) and endovascuarneurosurgeon. Since my stroke I've one a lot of thinking about neurological defecits and recovery. I initially had a very severe left sided hemiparesis that involved my face,arm, hand and leg. My core strength and trunk muscles on the left were also affected. Initially I could neither sit up nor hold my head up. I'm happy to report that I have regained a lot of my former strength but I'm not finished as I still use an AFO and a cane to walk and I do not have use of my left arm and hand yet. I'm writing because I had a revelation today ). I know now why my arm and hand are lagging so far behind my leg. I still have great difficulty bending my knee when I walk and lifting my toe(ankledorsiflexion)but I can walk 25 inutes on a treafmill and my speed has also been improving I can even walk without my brace and cane for short distances. so, the leg... coming along nicely.... the hand an arm...? not so much. well I figured out why. I simply havent tried as hard with my arm and hand as I have with my leg. When I first stroked I fell inmy bedroom and lay there for about 7 hours. I was nable to sit up and when I got out of bed my left leg collapsed underneath me and I hit the deck where I remained unbtil my husband came home that evening.When I got into rehab, about 1 week after the stroke I still had fantastic wakness of my trunk and leg as well a my arm. A week or 5 days after I got to rehab however my therapis t asked me if I was ready to try walking. I eagerly said"Oh yeah, of course." My first walks required a minimum of three and sometimes 4 people to assist me. One person followed behind me with my wheelchair in case I got too tiredand neded to sit. A second blocked my left knee, keeing it from buckling again once my weight was on it. A third therapist used to slide my left foot forward for me because I wasn't able to do it on my own. I walked like that with a team crowded around me and my first after strokes walks I was a max assist 3-4 person walker. but I still got up and tried and 'walked' everyday. My point is I wan't really able to walk but the drive to stay out of a wheelchair was so great I got up everyday and tried. I must have walked like that everyday for a month before my brain figured out how to bring my left leg forward. Once it figured that out my therapist no longer had to push my left leg forward for me and eventually I was abe to straighten my leg with enough force tht it didn't buckle either so I needed one less person to walk me eventually I became a 'contact guard' patient and could walk with one person who stayed nearby in case I lost balance. By that time i was able to keep my left leg straight, even under the weight of my body, and i was able to slide my left leg forward onmy own. Point is, even though I coudn't walk initially I kept tryng and eventually I was able to walk. Well my brain must have received1000 requests to move my left leg forward before it figured it out. The 'requests' came from me trying to do this thing that I couldn't at the time do. After all those requests, my brain figured out a way to move my left leg and it did Since then I've taken easily 1 million steps. that's a lot of'requests' being sent to my brain and my gait, though still impaired is a lot better tan it used to be and I've got video to prove it to myself {Whenever I get discouraged I look back to those old videos :o0 So I asked myself honestly. why isn't my arm/hand back.? Iv been going to OT and doing my excercises adnd weight bearing reigiously. So what gives? Then I thought about it in simple numbers it took lots and lots of'requests' to move my leg before my brain figured out how.In a single day I ask my brain to normalize my gait with evey step and I take hundreds of steps per day There isn't one movement or action that I ask of my arm with that kind of frequency. And that I believe that is why my arm and hand aren't back. I haven't been sending enough 'requests' to my brain. Recently I've been trying to do more things with my left arm andhand lik open my office door.Everytime I try I get frustrated and give up and use my right hand:o|. because of my spasticity I am not able to extend my arm or open my hand so I hven't been able to open the door. I stopped and thought about the numbers... truth is I know I haven't tried a thoudand times or even a few hundred times so of course my brain hasn't gotten the message, not enough 'requests' being sent. I'm a neuroscientists and I know that neuroplasticity ( the ability of a brain to rewire itself ybypassing damaged ares is real but it doesn't jus happen because we want it to. we've got to send 'requests'. And I mean LOTS of requests. I must have taken'maybe 1000 steps before my brain found a new pathway to enable me to bring my left leg forward.There isn't 1 thing that I've tried to do with my left arm 1000 times and that. I believe is why it isn't back yet. I've just got to stomach the frustration and deal with it & keep trying. My first steps after the stroke weren't pretty but they were and are so cherished by me. I simply kept trying to do something I could not do and my brain eventually figured it out. So Im going to just keep tryng to do things with my arm that I cannot yet do until it figures it out and I know it will because I'm not giving up on my arm or my hand. I'm not giving up on me. I wrote this similar content to aother survivor here and then got up from my desk to go to the bathroom. I tried again to open my office door and although my hand didn't open I got my arm extended away from my body just enough to get my fist on the lever which I then pushed down and then I pulled my door open with my left fist.) I walked to the bathroom with a HUGE grin:o) because Im practicing what I preach and it's working so keep using the parts that don't work. because that's how you will get them to work. If your early walking was as difficult and impaired as mine you'll only have to look back to your own experience and think about it how many steps did you take or try to take befor you were ale to ambulate at your current level and then ask yoursef; have you tried to do anything with your affected aram or hand with that high a frequency..?Ifyou're like me, probably not. Avoiding the wheelchair was a huge incentive and eventhough those early steps were with tons ogf assistanc I kept trying to move my leg fomyself and when I couldn't they'd push it forward so I firmly believe its in the effort of simply trying I couldn't move my leg at first but I kept trying (ie sending requsts to my brain...). My attemps to move my leg are what enabled my brain to find a new way to move my leg ) Hang in there survivors.Im not stopping unti I post a picture of me with both hands in the air, palms open ready to high five all you other fighters ) we survived ! so now lets persist and persevere and high five each other at the end of this long road. As always all my bes wishes, hopes and prayers for your full recovery d patience in the meantime )

hello All, I'm a 38 year old woman who is a stroke survivor. last year at the end of April I had a pretty large right midle cerebral artery stroke. I'm also a vascular(stroke) and endovascuarneurosurgeon. Since my stroke I've one a lot of thinking about neurological defecits and recovery. I initially had a very severe left sided hemiparesis that involved my face,arm, hand and leg. My core strength and trunk muscles on the left were also affected. Initially I could neither sit up nor hold my head up. I'm happy to report that I have regained a lot of my former strength but I'm not finished as I still use an AFO and a cane to walk and I do not have use of my left arm and hand yet. I'm writing because I had a revelation today ). I know now why my arm and hand are lagging so far behind my leg. I still have great difficulty bending my knee when I walk and lifting my toe(ankledorsiflexion)but I can walk 25 inutes on a treafmill and my speed has also been improving I can even walk without my brace and cane for short distances. so, the leg... coming along nicely.... the hand an arm...? not so much. well I figured out why. I simply havent tried as hard with my arm and hand as I have with my leg. When I first stroked I fell inmy bedroom and lay there for about 7 hours. I was nable to sit up and when I got out of bed my left leg collapsed underneath me and I hit the deck where I remained unbtil my husband came home that evening.When I got into rehab, about 1 week after the stroke I still had fantastic wakness of my trunk and leg as well a my arm. A week or 5 days after I got to rehab however my therapis t asked me if I was ready to try walking. I eagerly said"Oh yeah, of course." My first walks required a minimum of three and sometimes 4 people to assist me. One person followed behind me with my wheelchair in case I got too tiredand neded to sit. A second blocked my left knee, keeing it from buckling again once my weight was on it. A third therapist used to slide my left foot forward for me because I wasn't able to do it on my own. I walked like that with a team crowded around me and my first after strokes walks I was a max assist 3-4 person walker. but I still got up and tried and 'walked' everyday. My point is I wan't really able to walk but the drive to stay out of a wheelchair was so great I got up everyday and tried. I must have walked like that everyday for a month before my brain figured out how to bring my left leg forward. Once it figured that out my therapist no longer had to push my left leg forward for me and eventually I was abe to straighten my leg with enough force tht it didn't buckle either so I needed one less person to walk me eventually I became a 'contact guard' patient and could walk with one person who stayed nearby in case I lost balance. By that time i was able to keep my left leg straight, even under the weight of my body, and i was able to slide my left leg forward onmy own. Point is, even though I coudn't walk initially I kept tryng and eventually I was able to walk. Well my brain must have received1000 requests to move my left leg forward before it figured it out. The 'requests' came from me trying to do this thing that I couldn't at the time do. After all those requests, my brain figured out a way to move my left leg and it did Since then I've taken easily 1 million steps. that's a lot of'requests' being sent to my brain and my gait, though still impaired is a lot better tan it used to be and I've got video to prove it to myself {Whenever I get discouraged I look back to those old videos :o0 So I asked myself honestly. why isn't my arm/hand back.? Iv been going to OT and doing my excercises adnd weight bearing reigiously. So what gives? Then I thought about it in simple numbers it took lots and lots of'requests' to move my leg before my brain figured out how.In a single day I ask my brain to normalize my gait with evey step and I take hundreds of steps per day There isn't one movement or action that I ask of my arm with that kind of frequency. And that I believe that is why my arm and hand aren't back. I haven't been sending enough 'requests' to my brain. Recently I've been trying to do more things with my left arm andhand lik open my office door.Everytime I try I get frustrated and give up and use my right hand:o|. because of my spasticity I am not able to extend my arm or open my hand so I hven't been able to open the door. I stopped and thought about the numbers... truth is I know I haven't tried a thoudand times or even a few hundred times so of course my brain hasn't gotten the message, not enough 'requests' being sent. I'm a neuroscientists and I know that neuroplasticity ( the ability of a brain to rewire itself ybypassing damaged ares is real but it doesn't jus happen because we want it to. we've got to send 'requests'. And I mean LOTS of requests. I must have taken'maybe 1000 steps before my brain found a new pathway to enable me to bring my left leg forward.There isn't 1 thing that I've tried to do with my left arm 1000 times and that. I believe is why it isn't back yet. I've just got to stomach the frustration and deal with it & keep trying. My first steps after the stroke weren't pretty but they were and are so cherished by me. I simply kept trying to do something I could not do and my brain eventually figured it out. So Im going to just keep tryng to do things with my arm that I cannot yet do until it figures it out and I know it will because I'm not giving up on my arm or my hand. I'm not giving up on me. I wrote this similar content to aother survivor here and then got up from my desk to go to the bathroom. I tried again to open my office door and although my hand didn't open I got my arm extended away from my body just enough to get my fist on the lever which I then pushed down and then I pulled my door open with my left fist.) I walked to the bathroom with a HUGE grin:o) because Im practicing what I preach and it's working so keep using the parts that don't work. because that's how you will get them to work. If your early walking was as difficult and impaired as mine you'll only have to look back to your own experience and think about it how many steps did you take or try to take befor you were ale to ambulate at your current level and then ask yoursef; have you tried to do anything with your affected aram or hand with that high a frequency..?Ifyou're like me, probably not. Avoiding the wheelchair was a huge incentive and eventhough those early steps were with tons ogf assistanc I kept trying to move my leg fomyself and when I couldn't they'd push it forward so I firmly believe its in the effort of simply trying I couldn't move my leg at first but I kept trying (ie sending requsts to my brain...). My attemps to move my leg are what enabled my brain to find a new way to move my leg ) Hang in there survivors.Im not stopping unti I post a picture of me with both hands in the air, palms open ready to high five all you other fighters ) we survived ! so now lets persist and persevere and high five each other at the end of this long road. As always all my bes wishes, hopes and prayers for your full recovery d patience in the meantime )

I'm going to work on my arm and keep trying to do things I still cannot do. It worked for my leg. It was a long time before my brain figured out for itself how o pull my leg forward. I still remember it. I was getting into my bed and iI used to hook my right foot behind my left heel and pull my left leg u and into the bed but this day I sat down and just knew how to lift my leg into the bed. I thought to mysef. hey I think I can do that when I walk too. I could't wait to show my therapists and when I did they were really excited I went from being a patient that needed for people to walk with and being maximum assistance to being on contact guard which meant the PTs were nearby in case I lost balance but they no longer had to movre my leg for me. had I not kept trying to walk during that time my leg would be unusable t me like my sarm but the wheelchair was great motivation so I kep at it even whe I really couldn't walk without tos of help. So yeah I cannot yet do things with my arm.... Well not that longago I coyuldn;t walk either but I can now so Im just going to get focused and keep trying, What helps me is that Ive got videos of my first walks after the troke and my aboility and strength since then is obvious, glaringly so. I've just got to remind myself that I couln't walk but I kepyt trying and now I can ) Find your motivatuion whatever it is and keep at it. Keep the fauith and know in your heart that you will get better. Just as ou can walk now know you will get better ) know you are always in my prayers. as always all my best wishes for your full recovery and patience for the meantime )

As annoyingly painful as it is I've got to say just keep trying to use your hand. That's what doing and it irks me to no end but I know if I dont make my brain reconnec by tryng to use my hand it never will. Think about this: We all jbw that legs come back before arms right? Why is that? Some say its the weight bearing.. and maybe it is but I think its the effort we put into our legs. walking becomes a huge priority and we do it and keep trying to do it even when we can't My first' steps' safter the stroke consisted of 1 PT blocking my left knee with her knees so it wouldn't buckle when I put my weight on it. A 2nd PT literally pushed my left leg forward by placing her foot behind my heel and sliding my foot forward. Then I'd weight shift, get my weight on my leg and swing through with my norma right leg. I could't walk my first 100 to 1000 steps but I kept trying. now I've tried to open doors with my left hand and I cannot get my hand to open and grab the knob or twist and push but I know that I haven't tried o do it a thousand times yet either.... When I thibk of it like that it's no wonder I can do much more with my leg than I ca n with my arm; i've simply tried a lot harder with my leg because I must have taken a million steps sincethe stroke and that's a million prompts to my brain urging it to rewire. I f I'm breing hones I have to say I haven't tried to do a millio of any movement with my arm or hand So why am I surprised it's not back...? Of course it's not back. this all just means i've got to dedicate myself again to my hand and arm abd try to give them the same attention and input I gave my brain. That is where the keep trying comes in.I didn't want to be in a wheelchair so I kept trying to walk even when i couldn't and eventally my brain figured a lot of things out, not all because my walking is still awkward but I put in lots and lots of effort and I can easily walk 25 minutes on a treadmill non-stop I haven't yet given my hand and arm that kind of attention but Im going to start My leg got mch more stimulative inpput than my arm has received and part of my frustratoin is my spasticity.. I cannot open my hand or extend my arm s it's really hars trying to do anything with it but I still got out of bed and tried to walk everyday even when I couldn't swing my leg forward. I'm not giving up onmy sarm, I'm just going to get really tough and honest wityh myself I cannot expect to get more out of my sarm and hand until I put more into them They kindsa got shafted... I can do squats, bridges and stairs and tons of walking for my leg. Now I've got to get real about what I'm going to do for my arm and hand and I know I haven't done enough. I'm glad to read your positive attitude and pleased that you no longer see your therapy as pointless. When it gets hard;we've just got to work harder.

I initially wrot this to a young survivor friend of mine named Kim who was worried about her lack of return in her face. Kim also is recovering from a left hemiparesis but she's ambulating well with a leg brace and cane and even has some arm and hand movement. She was worried that her face wasn't progressing like the rest of her affected parts . I wrote this to her because I think all of us should be aware of plateau phases in recovery. They can make one feel like it's over but if you know about them you cn keep going an really heed all of the 'don't give up messages " you get from various peopl, invluding me. Never give up ! Hi Kim, After we were texting back and forth the other day I thought about something I probably should hve told you about a long time ago....It may or may not affect you but here goes. In recovery just about everyone will experience recovery plateaus. That's where you're doing your therapy faihfully. You're doing ll of your home excercises but still nothing changes. You see no improvement. ( Im not sure and I cannot prove it but I think that is the time that the brain is actually rewiring itself. Our therapy and excercises make the neurons of the brain reach out to make new connections, bypassing the damaged areas and dead neurons, but the actual making of these new connections and the strengthening of them is what I think is going on in the plateau. It's an important thing to know about because it can lead a survivor to think that their recovery is over because nothing is changing outwardly and they see no imporovements in their abilities despite all their efforts. I first read about this phenomenon in the book Stronger After Stroke. It was a good thing I read about it too because I was in a 4 month long plateau phase. I was at a point where I started to think, "maybe ythis is as good as I'll get...?" but the plateu ended and new subtle improvements continue to be made. Early recovery comes a lot easier than late recovery but as long as you knkow that your efforts are literally changing your brain and that takes time you shouldm't get discouraged. In the beinning of our recovery we make achievements swiftly like how I walked my first steps a week after the strokewhen initially I couldn't even sit up. That was a huge early gain. All of my gains since then have been much smaller but they're still coming so I can dea with small as long as they're still ppositive ).Immediately after stroke we all get brain swelling the swelling or edema is primarily in the stroked/deadarea but it can disrupt neighboring tissue that did't actually strokeby compressing it. Well, when that swelling goes down, which takes days, we see lots of return of function and that easy early returnit can set us up to feel like recovery wont be so bad.... It can give one thoughts like, "I used to be able to relearn things quickly but now a few moinths outfrom the stroke, im trying and nothing's happening... ". that is the plateau. your facial recovery might be in such a period and I point this out to let you kow that plateau's end. No one knows how long a plateau will last but we do know that they end.My longest plateau lasted aoutt 4 months. It was a rough 4 months because I had been trying to move my ankle daily with no apparent success an zero mvemenyt. After that 4 month period I was again trying to move my ankle and then voila! it moved.It was just a tiny weak movement butth same thing happened with my wrist. I had been trying t move it dail for months and I got othing then... it moved just a small bit but enough to let me knoe my recovey hand't ended it hd just plateaud for a while That let me know my plateau was ending and that my recovery would continue. I hope this makes sense. I dont know if I would have kept at it if I hadn't read about recovery plateau's in that book. I was like, "come on... I've been trying to lift my foot for months and got nothing and then one day it moved and I breathed the biggest sigh of relief. I think the plateau's are a cruel joke and though I cant provre it I'll bet that thyey are why some ppl don't recover well. I think they get into a plateau BUT they don't know about this phenomenon so they just JUST ASSUMe Tthey're NOT GOING TO GET ANY BETTER SO THEY stop trying whih of coursemeans they wont get any better but the people that know about this hidden snare can just keep trying anyway and they are the ones thatt make fantastic life-long recoveries. There's something to be said for simple stubborn pigheadedness. So, the moral of my story is no matter how little results you see just keep trying, you're changing your brain, you just can't see the results o those changes yet but they too will come bt only i you prersist/ stay strong. I know this work is hard. Im still typing 1 handed but Im not giving up. Spread the word. Everybody should know about plataeau's so they don't give up on their reoveries.Stay strong and just keep trying survivors ) As always all my best wishes for your full recovey, good health and patience for the meantime )

thanks for posting I have lots of spasticity on my left side and while I've been good about stretching I havent tried any prolonged stretching but I will now ) Best to you and thanks again for posting

Hry Birdie, I'm so sorry to hear how caged you feel but I get it. Stroke sucks big time and in the young folks like us I believe it's particulcrly devastating. I was just about to begin my career after finally completing 7 years of training after medical school and the stroke hits and everything is on hold... I still get anngry that this happened to me sometimes but when I get into that place I stop whate ver Im doing and take a few deep breaths in an effort to calm myself Always always let out the basdd feelings because they are poison that will ruin your progress and rob you of your hapiness. I'm grateful to still have lotsd of indepemdance, I drive myself and I get around town in taxi's h=when I don't want to drive because of traffic or parking considerations... That helps me to feel less burdensome and childlike. Im just staying focused on getting better and I've got plans for my recovery. Havbe you read any of the books written by other stroke survivors like Stronger After Stroke? Its a good book anmd I find it very useful for refocusing my perspective when I get down on the pace of my recovery. It helps me gather p my will and try again. I completely believe in the ability of our brains to recover I've seen it too many times and as a stroke neurologist I've learned the physiology that allows recovery to happen. I have to remind myself not to give up several times a dfay. I know that even though i cannot see coutward changes in my body when Im trying to use my left hand arm or control my distal leg or foot. Im focusing and nothing is happening... Well, nothing I can see anyway, tYou see all our continued efforts and attempt to use our weak parts makes physical changes in the brain that will enble us to relearn how to use our weak parts I know it willhappen it jut taked my continued effort, more patience than I ever knew existed in the world and time. But I can already do things now that I couldn't do months or weeks ago so I know it's happening. There s always HOPE after stroke. ALWAYS Never Give up pn your recovery. I've started an excercise regimine in t gym at my condo to supplemnt my outpatient OT and PT and I believe that too will help me to get back on my feet, without a can or an AFO. I know I willget there. Stay focused and don't ever give up ! Ever! your life is worth it and recovery is real nd achievable, it's no t easy but it is acgievable but onl if we keep at it ) trust me Im a doctor LOL but seriously though trust me.Its a philoophy that has taken me very far I've been driving myse4lf to and from work three days a week since lasy Aug and I live in Manhattan NY and work in New Jersey so I'm talking crossing the George Washington Bridge and using highways.. but Im doing it. I drive entirely 1 handed ( tright) as I still don't have control or udsse of my left hand but I'm working on it still.