thephoenix

Stroke Survivor - female
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  1. thephoenix
    Hello Everybody. if you don;t already know from my blpogs and profile info I am a atroke neurologist who is also a stroke survivor. I was 37 when I stroked last April. I still have a ways to go in my recovery. though, Im greatful to have regaiined much of my former independence. I still walk with an AFO and a cane and I have no real use of my left arm or hand but I may have found a way to get my arm back. I'm really excited about it because as many of you are; I'm pretty tired of living 1 handed in our 2 handed world. Anyway, I'm getting myself into a research project that's happening at the hospital where I work, University hospital of UMDNJ in Newark, NJ. The PM&R folks of UMDNJ have teamed up with these brilliant techno geeks at New Jersey Institute of Technology. They've designed research projects to enable them to better understand neuroplasticity and how it works in recovery after brain injuries like stroke. there are NO MEDICATIONS involved. they're using Virtual ReALITY (vr) TO TRICK THE BRAIN INTO THINKING THE AFFECTED LIMB ( FOR ME, IT'S LEFT) is working AND THAT EENABLES THE BRAIN TO RELEARN HOW TO USE THE AFFECTED LIMB. i'VE DONE SOME RESEARCH ON THIS AND THE'RE USING THE SAME PRINCIPLE AS Dr.S. Ramachandran who first described mirror box therapy for treating learned paralysis. Learned paralysis is what happens after a person has been paralyzed for a long time. After many attempts the brain learns that it can no longer control the affected limb. Once it learns that it kind of stops trying to connect to it and recovery grinds to a halt. If you trick the brain into thinking its controling the limb it will begin again at trying to control it long term. Its the same theory behind mirror box therapy which has been shown to work. I'm currently waiting t hear back from the researchers so I can be evaluATED BY THE pt THAT'S WORKING WITH THE RESEARCHERS. tHE pt WILL DETERMINE WHAT LEVEL OF THE STUDY MIGHT BE BEST FOR ME. tHHEY'RE INITIALLY LOOKING FOR CHRONIC ( MEANING STROKE NOT WITHIN THE PAST 6 MONTHS) SURVIVORS BUT THEY'LL EVALUATE ALL COMERS. tHEY HAD A GUY WHO HADN'T USED HIS RIGHT SARM FOR 10YEARS THEN AFTER SPENDING 2 WEEKS DOING THE INTENSIVE vr RETRAINIG THE GUY ABSENTMINDEDLY REACHED FOR HIS REMOTE CONTROL WITH THE HAND HE HADN'T USED IN 10 YEARS! wELL, iM VERY EXCITED ABOUT THIS POTENTIAL OPPORTUNITY TO GIVE ME MY ARM BACK ) i'LL TELL YOU WHAT i EXPERIENCECD WHEN i WEnT TO THEIR LABS. I t was painless and very cool.tHEY PUT A SPECIAL SENSORY GLOVE ON MY RIGHT HAND. tHEir FANCY CO MPUTER PROGRAMS TAKES POSITION INFORMATION FROM WHERE MY FINGERS ARE BASED ON INFO GENERATED BY THE GLOVE WHiCH IS ON MY RIGHT HAND. tHE COMPUTER DISPLAYS THE mirror image of my right hand on a screen. the mirror image of my right hand looks like my left hand so if I open my right,gloved hand and watch the screen; I see what looks like my left hand opening. I would do excercises with my right hand all the while my brain is getting the sensory experience that my left hand is moving. The NJIT folks have designed video games and robotics to assist. I put my left arm into this robotic arm and I ppayed a video game, while wearing 3-D glasses I had to make these blinking balls intersect and explode. The robotic arm would feel if I tried to lift my arm and it would assist my in extending my left arm as thats still hard for me. I even played a few keystrokes of virtual piano wityh my left hand! It was amazing but I was able to flex my fingers individually to strike the keys. I can't wait to be evaluated and formally admitted into the study.They're in open enrollment now. They will take people with all ranges of difficulty in their arm or hand. I even have spasticity and it is not easy to open my hand because of my high tone but there's a research track with excercises that will still beappropriate for me so Im going for it. I just wanted to share what I think ids a great opportunity for enhancing our recovery. Time committment is 5 days per week/ three hours a day on our camous and this schedule of training o ther machines sad in the VR environment goes on for 2 weeks. So If you can get to Newark and would like to get involved please comment and I wiillpass along contact info for the researchers and teir PT so an eval can be arranged. I think this could be the future of OT with regard to stroke rehab. an it was really exciting to play a few key strokes even on a virtual piano. you can look up mirror box therapy if you'd like to learn more about the theory and principle to their work. As always, all my best hopes, wishes and prayers for your continued recovery and peace and patience for the meantime )
  2. thephoenix
    If you didn't already know I've decided to write a book, a chronicle of my stroke experience and such. I've figured it will have different sections targeting different populations and in each section I will share things that particular group might want to know . There will be something for caregivers of stroke survivors, something for the survivors and this first section is something for my colleagues and that's why I've tagged you...
     
    This will be in the section aimed at interesting stuff I wanted to share with other neurologists. My ghost writer is a lay person ( although she has MS so she gets me on many levels...) so she couldn't give me the kind of opinion I'd like to get from you... Please let me know what you think of this. If you find it interesting or lame :oP Read it at your leisure and let me know your thoughts. Thanks so much. Also, I'd really like to know what you'd like to know but might be too uncomfortable asking a patient... Well, please ask me. I'd like for the book to be a good and entertaining read and I'd like each group to get something useful out of it. I may be too close to get back into my un-stroked brain and think about what I would have wanted to now if I had patient like me So please ask away. and also please forward it to any other clinicians tyyou think might have input or questions they'd like to ask. This section should be relevant to other clinicians (RNs & MDs- primarily neurologists. I've explained a few things that many of you will already be very familiar with but that's because I want all comers to be able to read and hopefully enjoy all sections.. Some things I did not explain but I know the neurologists among you will understand what I mean by extinction to double simultaneous stimuli. Even though I don't know if it's ever been described its the same exact principle as extinction in primary sensory modalities, just with a special sensory modality which I thought was cool/interesting
     
     
     
    I sincerely thank all of you for taking your time to read this and I'll be sending cyber hugs for every response and I'll be doling out real one armed real hugs whenever I get the chance or maybe two armed hugs by then ) ) thanks so much
     
    and now that I've pu t in all the 'a's I missed Im redy for your responses so ak me anything I will not identify you by your question so no need to feel embarassed for asking me anything I dont embarass that easily and its especially hard to make me uncomfortable ) I will share my responses with this tagged group if you're interested in hearing questions and follow up answers
     
     
     
    Kicking Cones and Other Things…
     
     
     
     
     
    After my stroke I have spent a lot of time kicking , or trying to kick things… My initial left sided paarlysis has largely resolved but has left me with a remarkable lack of muscle control on my left side. I can walk with some assistive devices and I can climb stairs but my gait is still abnormal and inefficient which means walking any given distance takes more energy than it would if I walked ‘normally’ Our normal gait is beautifully designed to conserve energy and propel us forward as we walk. Because my gait is abnormal my affected left leg, has to generate more force to propel my body through each stride than it ever had to before the stroke. To fix this, I’ve spent lots of time trying to kick things. I’ve broken down a single stride into many little steps that normally no one thinks about but because my brain/body connection has been disrupted I have to concentrate on every aspect of a single stride. Flex hip, kick lower leg out, heel strike roll onto ball of foot then onto toes and push off lifting the leg with another hip flexion in preparation for the next step. My unstroked brain had this program set and stored and it would fire automatically whenever I decided to walk It would just happen and all I had to think was’ walk’. Well, now, things are more complicated… More complicated but not impossible My therapists have helped me break down the components of my gait so I can work on individual parts with the plan that once I relearn the components I will be able to string them together into fluid movements such as those I used to have before the stroke/ To that end I have spent lots of time kicking cones and other things. In the rehab gym while listening to Eve6’s v Inside Out on the radio I have spent countless minutes and hours trying to kick things. I know once I can kick things my gait will be that much better but I’m not there yet and it’s frustrating. I still walk like half a Frankenstein but I’m walking and there was a time I was bed bound so I’m not complaining I’m just trying to kick things…
     
     
     
    One day I’ll kick this strokes after affects right out of my life and I’ll run again. Of that I am sure. It’s only the ‘when ‘that continues to elude me. I have tried to kick cones, balls and boxes and though I'm not yet fleet footed I’m still trying and will continue to do so until I can kick to my hearts desire ) All in all I'm coming along nicely albeit slowly but I'm so much better now than I used to be so how can I really complain. One last thing I just noticed. Since I type with my right hand only I'm not surprised that I make a lot of typos.. What's interesting is when I make an 'oops I missed letter' typo; it's almost always the letter "a" that gets missed. Of course you know I tried to understand why because I'm still a scientist... So what I'm a brain damaged neuroscientist ...t it's not lost on me that A is the left most letter on the keyboard... I guess neglect cannot be underestimated... It's really mild though. I mean, I drive and have been for the past 9 months. I started driving four months after the stroke. If my neglect was that bad I almost certainly would have crashed by now. I've come to the conclusion that if a patient is really aware of neglect they can train themselves to look left and pay attention. On the road, my game is to make mental notes of the makes and models of cars to my left, it kept me payuing attention and with time, like the improvements in my motor functions my attention has gotten better; except for missing the"A's" I also noticed my neglect when playing Bejeweled after the stroke my scores fell into the 30k-60 k range and they used to be over 300K... Wen I analyzed why I realized I had only been playing the right side of the board but I played until my scores got up into the 6 figure range and I'm convinced that helped my inattention.
     
     
     
    I also understand neglect more fully I think it's a normal part of human function that goes haywire in strokes. Neglect enables us to live in societies communally. When we go to lunch with friends in a busy restaurant we have no problem ignoring conversations going o nin our vicinity so we can focus on the people we are dining with. We all , in a sense, neglect the rest of the room every time we choose to pay attention to somebody or something... Neglect is important we can be in a crowded room and focus in on one thing. I think without it we would all have ADHD because everything would catch our attention
     
     
     
     
    How a stroke can surprise a neurologist… things I didn’t see coming…
     
    I remember laying in my hospital bed charting my symptoms onto the areas of my brain that were involved. Before very long I was aware that nearly the entire right hemisphere was involved It went like this. I am having a hard time looking to the left, that means my frontal eye felds are inolved and that’s a very anterior area on the right side of my brain. From there, I knew I had zero movement on my entire left side, that meant the motor strip was involved, marching more posteriorly I knew I had absolutely no sensation on the left so my sensory strip which lies just behind the motor strip was involved. I knew I was having trouble seeing in certain parts of my visual field on the left which meant the were areasposterior to my sensory strip that were involved and it was involving the optic radiations I still remember thinking of all my symptoms and where those functions lived in my brain realizing,”I’m having a really big stroke.” That was the first time I was really scared but not the last... I also knew I had a small degree of sensorimotor neglect which is a function thst maps to the posterior part of the right hemisphere. As I put it all together the front of my right hemisphere wasn’t functioning. Neither was the middle or the posterior part… This realization came with a lot of fear because I knew that holo-MCA ( whole middle cerebral artery) strokes in someone my age are not infrequently fatal… I remember thinking,” seriously! I might die!? I continued to be incredulous because after all this wasn’t even supposed to be happening to me since I am so young and healthy…”There where other moments where the reality of it all cam crashing down on me but then there were other things that completely took me, the neurologist, by complete surprise. I noticed early after the stroke that I was having difficulty speaking, not language as one might have with aphasia and that my language was spared made sense because language functions are usually on the left side which wass entirely normal…. My speech was affected because, the best I can explain it the part of my brain that coordinated breathing an speaking at the same time was involved and I didn’t know where this function was housed, stroke-surprise#1. I also had no volume when I spoke. Early on much of my speaking was in whisper and I couldn’t speak louder even when I tried and sometimes when I was speaking I would forget to breath so I’d finish a sentence breathless. I noticed this and assessed whether my lungs or heart were why I couldn’t breath but I was sure that wasn’t the case because when I noticed the breathlessness I could take a deep breath and be fine and if it were because of my heart or my lungs I wouldn’t have been able to fix it by smply breathing. It dawned on me that I was simply forgetting to breath I had no idea that this could happen after my kind of stroke. I never heard about it before, never read it in a neurology textbook and I’ve never had a patient complain of it. I think it’s like my walking; instead of things happening automatically at the same time I would focus on the mouth and tongue movements required to make the words and that took so much focus I would literally forget to breath…. The next surprise was my sudden rhythmlessness. In residency I was voted the resident most likely to break out into spontaneous dance during rounds The graduation’ awards’ were cute and silly but I was the official dancer of the group so my sudden lack of rhythm unnerved me. It was just a habit … We could be walking around the ward seeing our patients, a song would pop into my head and I’d do a few discreet dance moves. After the stroke I couldn’t hold a tune, I couldn’t sing along to songs I knew and I definitely couldn’t dance; I couldn’t even sway in time to music It was weird and I didn’t know to expect that. Again it was a defecit I’d never heard of, never read about and no patient ever complained about it to me. I presume that when you can’t sit up you’re not complaining to your doctor about not being able to dance I guess they just filed it under ‘ bigger fish to fry…’ The next thing I didn’t realize would happen was part of my initial neglect. Neglect is usually located in the back of the right hemisphere. I had a touch of neglect but I was still aware of my lleft side so It waasn’t so bad. The interesting thing I didn’t know to expect was that the stroke seemed to erase my minds’ ability to imagine my left side. It’s like when you’re telling a story and you’re setting the scene and you want to relate what song was playing in the background during the setting of your story but you reach down, trying to remember the name of the song but you come up with nothing.. I’d try to imagine doing something with my left limbs and I’d reach down and get nothing It was as though they were simply gone, they no longer existed to my mind… I could neither feel nor imagine my left arm or leg and I stayed that way for the better part of the first year after the stroke I had no idea to expect this. It want written about in any neurology textbook I ever read and none of my patients ever explained it to me. I guess you can’t complain about something if it doesn’t exist to you… The last stroke-surprise I had was impaired hearing Neurologists always assert that hearing loss with hemispheric strokes is virtually impossible because hearing is so critical to survival that it involves large areas of both hemispheres and if a person is to be rendered hearing impired by a hemispheric stroke huge amounts of brain tissue must be lost and those patients would be in such poor shape it would be impossible for them to complain about hearing difficulties.. Well, I didn’t have hearing loss but my hearing was definitely impaired. My husband and I were at home watching American Idol together as is our habit we critique the contestants from our sofa and compare notes. After one performance my husband looked at me waiting to hear my impression of the performance. I do not remember who sang but I turned to him and said,’ugh, that was horrible, it sounded empty and hollow…’ he said, “what!? That was great to me.” I couldn’t believe it. So as the neurologist I thought about itand after quick experiment I realized I was no longer hearing in stereo. This defecit was initially lost on me because as I was examined, and I always paid attention to my defecits when the stroke team assessed me everyday. I lay there charting my defecits mapping them onto my bran and therefore knowing how severely I was affected. Everytime they would rub their fingers near my ears I could always hear it on both sides. That however only meant that the hearing apparatus in my ear, the nerve that carried that information into my brainstem were intact. I already knew my brainstem wasn’t affected so why would I have hearing loss. I never did when they tested me. Yet, here I was not hearing properly and I knew it but didn’t understand it. I then realized that the impairment was not at the level of my brainstem or ear, which it shouldn’t have been since the hemisphere is where my stroke was. My problem was in my hemisphere when they tested me with the finger rub at my ear the sound was appreciated by my hearing apparatus in the ear which then activated the acoustic nerve in my ear that projects into the brainstem. All of those components were normal. After the information enters the brainstem it gets projected up to the cerebral hemisphere where the sound is assessed by my brain for further processing of information like what the sound is coming from, where it is, if its moving ect. I then realized I had left sided neglect of my hearing. It suddenly made perfect sense to me, In a room full of noise I’d have a hard time hearing what an individual was saying Initially this defecit was virtually impossible to detect under normal circumstances bcause my normal right ear and normal left hemisphere have no problem processing sound in my environment. This meant the lack on info coming in from the left side of the world was missing but not missed since I could hear sounds from the right side of space just fine. The neurologist in me devised an experiment to test this hypothesis. I figured I wasn’t digging that particular Idol performance because I was essentially experiencing it in mono instead of stereo like Tim. To sort thisout and test my theory. I plugged my ipod ear buds into both ears and played a song then I tested each ear individually and sure enough I was not fully experiencing the music when my left bud was the only one in and when both were in the sound experience was identical to what I heard when I had only the right bud in I had extinction to simultaneous stimulation for sound It was interesting even though it meant I was more abnormal than I originally thought. I then devised my own therapy to fix this which involved listening to music with the left ear bud only hoping that I could get my left world hearing back online by increasing the stimulation to the system . It worked, several one sided listening session later I could feel when my stereo hearing was restored. I never knew about this potential defecit until I experienced it and I wouldn’t have recognized it because it is the perfect invisible defecit. When you hear the right side of a room it’s hard to recognize that the left side of the room sounds are being lost, thank you American Idol. After lots of time and practice singing along to music I can now sing in time music and I can sway though my dancing still needs work. Its funny the resolution of my unexpected symptoms is outpacing the defecits everyone knew I should anticipate. I cannot help but be fascinated by this stroke even though it’s turned my world upside down. The other surprise was how much the stroke affected my right side. We are tught in medical school nd residency that most primary brain functions are crossed such that the left side f the brain controls movement, sensations on the right side of the body and vice versa with the left. We are also taught about uncrossed fibers but there’s the thinking that they’re not all that important. Well I know now that they are. With my right body being completely normal there are things I thought I would be able to do with my right side only but surprisingly I cannot. I would have thought that since my right leg is ‘normal’ I should be able to hop on my right leg. Well, I of course tried this experiment and could not get and inch off the ground. I’m still not sure why but I have trie it and I simlpy cannot jump. There’s something about the planning of hopping that my brain lost in the stroke. I’ve worked on it but somehow it still isn’t happening and I’m not sure why. I never would have guessed that I’d have so much difficulty doing a right body task but the affects of this stroke continue to surprise me.
     
     
     
     
     
     
  4. thephoenix
    I posted this on my fb for some friends and family. I 'm not sure copying it here will be adequate but I hop so ) Enjoy and keep on keeping on survivors!
    Surviving a Stroke « NJN News – New Jersey Public Television and Radio njnnewspublictv.wordpress.com Dr. Oriana Cornett had spent years studying
  5. thephoenix
    So,I live in New Jersey now; we moved from Manhattan across the Hudson rive to NJ in March. I love it there imensely but its been raining here all week and today it started to rain on my spoul. I'm usually in a much brighter mood but today I cried most of the morning... It was one of those, can't wait to get to my office, close my door and kneel to pray so I can cry afterwards kinds of days.. Weirdest thing I had a great session in OT AND PT yesterday but I woke up as usul with a bum left leg and I lefthand n arm that I still cannot control and use functioally. I was fine when I walked out of my home and got in the car. Somewhere along the drive, and its a short drive, I just felt it coming for me, sadness! A-freking-gain...? Aren;t you sick of seeing me cryiing...? I sure am sick of cryinmg but II kno better than to try and hold it in So I cried and because other than a radio interview I did today I got to be alone in my office, I cried it the H up. I prayed and cried and knelt and sat and cried and I blogged and cried and I talked with a survivor friemd p mine who was worried because Im usually picking her up ... Well, not today. Today was for cryingm just like it's for raining it cnnot be stopped it will bring healing right...? eventually Worry not durvivors I still believe healing is coming for me I'm deeply spiritual and I fully believe Gd has a plan for me nd that plan requires me to take this stroke and help my future patiwnts but here's the kick Im in the best position to really help others dealing with this kind of brain injury but without my hand and arm back Im going to be jobless ome July1.. I only worry now about when it's coming for me. The when is everything now I know I havent had to wait as long as many people here but it has bee just over a year and no matter how you slice it a year is a long time. I'm amazed, awed and inspired by the surivors that have been fighting this fight to get themselves back for years... That these rsiliant urvivors still have joy amd still keep trying give m rl hopwe. If they can hang in there and keep trying of course I can too...Thank you for fortifying me survivors ) If I can give back one tent of what I receive I will be happy )NOw that I got that out. Know I am not going to give up, not for a day a week or a minute I'm never giving up opn my recovery. Well not until Im recovered :oP
  6. thephoenix
    Please don't think the press has gone to my head. I actually missed my first tv interview which aired this passed Monday. I was in my kitxhen trying desperately to prepare dinner...I'm not soo int me; just thought I'd share. Hope you like. It will appear in Pulse Magazine; the next issue I think...
     
    Stroke Shock: When the Doctor Become a Patient
     
    By Maryann Brinley
     

     
    “I remember thinking, ‘I’m in bed in a neurosurgical intensive care unit and I’m not the doctor doing the rounds. I’m a patient and the other patients around me look pretty crummy.’”
     
    A stroke expert in the UMDNJ-New Jersey Medical School Department of Neurosurgery, Oriana Cornett, MD, was two months from completing her seven-year-long, endovascular neurosurgical residency in April 2010. She was 37, had normal blood pressure, no personal or genetic history of heart disease or diabetes and no warning signs of the catastrophe that would alter the course of her life.
     
    Cornett had been so healthy that in Manhattan, where she lived with her husband, they would often run six and a half miles in Central Park. Yet, there she was in an ICU on a Friday evening – after a day in which time had stood nearly still while a cryptogenic stroke played weird, wild havoc in the right side of her brain. Cryptogenic? That means a “big I-don’t-know” kind of stroke, Cornett explains. “It was an M1 occlusion. Sixty to seventy percent of the time, an M1 occlusion in someone as young as I am is a killer.”
     
    Looking back on the experience during an interview in her office in the Doctors’ Office Center, Cornett is upbeat. An optimist, she laughs at the irony of a stroke doctor having a stroke. She has spent the last year working hard to regain movement on her left side and doing stroke research back at work. “I’ve learned a whole lot about having a stroke but I don’t recommend having one.” She props up her left leg on the desk. She wears a brace above her sneaker. Her left hand is a work in progress. “I’ve recovered my face, which gives me a lot of hope because my face was severely affected. My patients used to ask, ‘Am I going to be okay, Doc?’ I would say, ‘I hope so but I don’t really know.’ The stroke has given me a whole different perspective.”
     
    Here’s what happened on that Friday. Cornett had been scheduled to be at a meeting in the angiography suite at UMDNJ-University Hospital at 7 a.m. “I wake up and see that it’s 8:08 a.m. I’m late. I’m never late, especially for this regular conference which was the favorite part of my week. The residents can ask all the questions we normally couldn’t cover in a busy week.” Routinely run NJMS associate professor and program director Charles J. Prestigiacomo, MD, and assistant professor Chirag Gandhi, MD, the Friday morning meetings were “something I loved.” At home, she hops out of bed and hurries to the bathroom. Reaching for toilet paper, her left hand doesn’t work. Then it’s her leg. In the mirror, “my face is all snarly and I think, ‘This can’t be good.’” She falls to the bathroom floor. This stroke doctor isn’t thinking stroke.
     
    She tells her husband, “Something is wrong with me. I can’t walk.” Yet, she refuses to let him call for help, insisting, “I’m the doctor here. I know what I’ve got and it’s not a stroke. Go to work.” He helps her back to bed and she recalls, “I made him leave saying, ‘You know, honey, I think I’ve got this thing called GBS. I’ll be fine.’” She’s not fine.
     
    Meanwhile, she explains, “There is a feature of some strokes called neglect. This is a right brain event. You don’t realize you have a problem at all.” “I’ve had patients with right side strokes who became totally psychotic.” Cornett doesn’t believe that she had complete “neglect” because she was aware that something was wrong but she kept thinking, “I’m just too young and healthy to be having a stroke. It’s got to be something else.” She was convinced it wasn’t life-threatening. Perhaps it was poison from her dinner at a Greenwich Village restaurant the night before. “I wouldn’t know what cocaine looked like. You could have told me it was parmesan cheese. Even some rare or uncommon side effect to a common vaccination was more likely than a stroke for someone as healthy as me.” Her sense of time slows to a crawl. Hours feel like minutes. “My perception of time was way off.”
     
    Two days earlier, she had received a vaccine booster for tetanus, diphtheria and pertussis. Her blood pressure had been low, 104 over 40, but, “Low is normal for me. I got the shot in my left deltoid and by Thursday, there was a little swelling and pain at the injection site so I looked it up and discovered that in rare instances, Guillain-Barre syndrome (GBS) can result.” GBS, which can be life-threatening, will cause slow, ascending paralysis in a pattern totally different from stroke. “I was slurring my words and it had happened fast. A stroke is sudden so my symptoms were completely wrong for GBS.”
     
    For hours that day, while Oriana Cornett was in bed and later on the floor — after falling on the way to get a drink of water — the stroke in her brain destroyed brain cells. As Charles Prestigiacomo explains, with any stroke, “Within minutes, decisions must be made about what needs to happen. Any stop or pause in the chain results in a waste of time and precious brain cells.” At UH, a Brain Attack Team (BAT) is always a pager away from immediate action. The window of time between the onset of a stroke and receiving treatment has opened wider for some patients but when Cornett passed the three, six and then eight hour mark, she lost her chance to receive intravenous tissue plasminogen activator (tPA), intra-arterial medication to break up the blockage, or to undergo an intervention where a surgeon uses probes inside the vascular system to mechanically dislodge a clot.
     
    When she heard her husband’s key at the front door, she was relieved. “What are you doing on the floor?” he asks. “I’ve fallen and I can’t get up,” she answers, adding “don’t make any wisecracks.” So confused about time, Cornett asked for the phone in her purse to let them know she wouldn’t be at work. “I thought it might be 9 in the morning. It was 7 in the evening.” He telephoned UH, described her situation and was told to call 911 immediately. “My husband was mad at me, scared to death and angry with himself, especially there in the beginning when he wasn’t sure if I was going to make it,” she admits.
     
    When the emergency medical team arrived, she told them, “I know it looks bad but I’m a stroke doctor and this can’t be a stroke. Trust me.” At Mount Sinai Medical Center in Manhattan in the ICU, Cornett maintained that disbelief. When a CAT scan came back normal, she said, “I told you so.” Yet, she points out, with any stroke, a CAT scan can look normal for hours afterward. It’s only when swelling develops that the picture changes.
     
    An MRI, more sensitive to strokes, told a different story. “I didn’t know if I trusted what the doctor was telling me. I looked at her thinking, ‘Holy moly, I’ve had more experience than you do. I spent three years studying and looking at strokes.’”
     
    What also ran through her mind was a question quite contrary for an expert in endovascular neurosurgical procedures who was highly skilled at threading catheters into blood vessels. She found herself wondering, “If I really did have a stroke, would I want that tPA? It can cause bleeding. Do I really want someone going into my brain to yank out a clot? Some people die as a result.” This physician who had offered these treatments to patients all the time was thinking like a patient. “Overall I know that people do much better with treatment than without. I even kept telling my husband, ‘Don’t let them stick a needle in my back for the GBS spinal test. I really don’t want that needle.’”
     
    Early the next morning, when Chirag Gandhi sat by her bedside at Mount Sinai, she got it. Her husband had slept on the floor beside her bed.
     
    “How bad is it?” she asked Gandhi. Prestigiacomo, who was away on business at the time and contacted by phone, “couldn’t believe it.”
     
    “You have a sizable infarct, an M1,” Gandhi explained. “The good news is that you probably won’t need a hemi-crani” – the surgical procedure to remove a quarter of the skull.
     
    “A hemi-crani? Chirag, what did you say?”
     
    An artery in Cornett’s otherwise healthy brain had been completely blocked. “I have all the beautiful vessels of a young, healthy woman except for one. Everything, my heart, my lungs, my carotids are fine…except for that one, which was occluded.” It had caused a massive stroke and when the swollen brain has no place to go but down, it can compress the brain stem which controls breathing and cardiac function. She was still in danger.
     
    “Brain herniation can result. You become so lethargic that you can’t keep your eyes open so you slip into a coma and die.” That explained why she had been on neuro-check every 15 minutes. “We had often talked about patients in this way but now we were talking about me. It was so shocking and it was only then that it started to sink in: I can’t move my face. I can’t move my arm. I can’t move my leg. And my husband has tried pinching me and all I can feel is this weird sense of nebulous pain coming from I-don’t-know-where-exactly.”
     
    When the hospital’s medical team arrived in her room, she was mapping her own stroke. “I was registering everything. Sitting there in bed, I thought, this is pretty big. I am experiencing it right here and now.” When asked by the team if she had neglect, she told them she realized she had a problem with her left side. She passed several other neurological tests. Asked to draw a clock, right-sided stroke victims may only draw half the face, trying to squeeze all the numbers onto that side. In a test known as A cancellation, the patient crosses out all the A’s on a page of letters. Someone with neglect can only cross out A’s on the right. Yet, Cornett showed some signs of neglect. She couldn’t move her eyes left and recalls thinking, “I have to remember this because it is fascinating. I had always wondered what neglect felt like. You don’t know your left side.”
     
    When one doctor expressed concern about her morning sleepiness, she responded, “I’m not herniation-tired. I can wake up. I just didn’t sleep well.” Surprised, someone remarked, “Did you hear what she said? She’s not herniation-tired!”
     
    Oriana Cornett was still the doctor. Ten days in acute hospital care and then months of physical therapy in rehab followed. “I loved therapy and walked the very first week after the stroke…with a lot of help.” She recovered her facial muscles and some left arm strength using mirrors. “My left eye had been wide open. My smile was crooked. In the mirror, I would move my right arm and then stare at the left arm to make it move. It was wild.” Describing her deficits in computer circuitry terms, “I liken my problems to software issues. With time passing, I also have hardware problems because my muscles are weak.”
     
    To return to working in the angiography suite, her arm would have to be back to full function. “I loved the work we did but I’m hopeful now about getting back to seeing patients soon. I have a lot to give, especially understanding what they have gone through. Stroke recovery is complicated and we have different levels of problems. Just let me tell you what I’ve learned.”
     

     

     

     
     
  7. thephoenix
    Well it's true. Im gong to be o the boob tube. I just finished a tv interview with a reporter fom WMBC, which is a local Ne Jersey cable news station. As May is stroke awareness month I was asked i it was ok to revisit my stroke story. With me being a stroke doctor who had a stroke at the healthy active age of 37... well, I did the interview today and did some footage of me typing at my desk and walking outside. I'm kind of nervous about seeing myself on tv becaues while my face is worlds better I know it's not how it was pre stroke but whatever it's done I'll b on tv on Monday May 2nd between 5 and 6 pm in NYC the cable chanel is 63 in New Jersey or Jersey CCirty, wher I live it'll be on chane 20 again btween 5 and 6 pm. wish me luck ;o)
  8. thephoenix
    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 )
     
     
  9. thephoenix
    I initially wroet 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 t realized as I had been trying to guide her throug this recovery process there was something I never told or warned her abu so I wrote the following email .I'm reblogging it here becaus I think not everybody is aware of what I discuss but we all should be for very good reasons.All of us survivors should be ware of plateau phases in recovery. they can make one feel like it's over but ifyou 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, Doing all your excercies but still nothing changes. you see no improvement.
     
    Im not sure and I cannot prove it but I think the plateau period 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 having just read about this phenomena I thought..."maybe I'm in a plateau...? I'd better keep trying, just in case ) Well, Im glad I kept trying )My plateu ended and its end was heralded bnew subtle improvements. Early recovery comes a lot easier than late recovery but as long as you kow that your efforts are literally changing your brain and that takes time you shouldm't get discouraged.( I know that's easy to say, I get discouraged to but I refuse to stop tryng) In the beinning of our recovery we make achievements swiftly like how I walked my first steps a week after the stroke when initially I couldn't even sit up. That was aHUGE early gain. ) All of my gains since then have been much smaller but they're still comingI 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 stroke by compressing it. Well, when that swelling goes down, which takes days to weeks, we see lots of return of function and that easy early return it 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 about 4 months. It was a rough 4 months because I had been trying to move my ankle daily with no apparent success an zero movemen t. I was about ready to give up but then... After that 4 month period I was again trying to move my ankle and voila! it moved.It was just a tiny weak movement butth same thing happened with my wrist. I had been trying t move it daily for months and I got nothing then... it moved, like my ankle it was just a small bit of weak movement but it was enough to let me know my recovey hand't ended it had 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. and that's why I'm telling you now Kim, hanh in there Ihad been thinking, "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 prove it I'll bet that thyey are why some ppl don't recover fully. 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 course means they wont get any better but the people that know about this hidden snare can just keep trying anyway and they are the ones that 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 of those changes yet but they too will come but only if you prersistand keep at it. stay strong! I know this work is hard, fustrating and heart breaking . I can't count the number of times I cried while staring down at my toes trying to get them to move but like my wrist and ankle I know someday they will move if I keep sending my brain the 'requests'. Im still typing 1 handed but Im not giving up. Spread the word. Everybody should know about plateau'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 )
     
     
  10. thephoenix
    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 )
     
     
     
     
  11. thephoenix
    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 )