thephoenix

CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! IM SO HAPPY FOR YOU )

I couldn't agree with nancy more. I'm so sorry to hear this but I think you can drop the quotes. What you're having is more than likely a seizure. A person can have a partial seizure and not lose consciousness but believe me their brain is not processing information normally. A partial seizure can then secondarily generalize, meaning the whole brain gets involved and then you'd be unconscious. Just because you recall it and didn't pass out doesn't mean you didn't have a seizure. A partial seizure can stay partial ( in one part of the brain only) of it can generalize( whole brain involved) and unconsciousness ad a result if ehole brain involvement just because some stay partial doesn't mean others won't generalize and there's no way up predict when it'll happen . I'm sorry but its not safe for you to drive. I remember the joy when you got the ability yo drive and I totally get it but seriously imagine you hit somebody... It would really destroy you,not to mention you could hurt yourself. Lease tell your neurologist and give up the keys,at leafy for now. How would you handle it if you had an episode behind the wheel and killed a kid? From what I remember of you ; you'd really be crushed. I haven't been around for a while so to refresh your memory I am a 40 year old stroke neurologist, yeah I get theinsane irony, who had a big stroke at age 37.. I've been back to work so I haven't posted here in a long long time but I got the email notification about your new blog entry so here I am. Stay safe :-)

good for you ) Im glad you're still trying new things

Katrina, my heart is absolutely broken for you I wish I knew the right things to say to make you feel better. I wis I could just make you better so you wouldnt have to go trough thi anymore. I know all too well how heavily disablity weighs on the soul. god hasn't forgotten you but Im not even going to tak about it, You have to come to that reALIZATION ON YOUR Own time I just pray that you eill and that you will not ever give up on yourself I had a revalation ne evening it was about 6 montha after the stroke and I was out later tha I planned to be I had just seen a movie with my sister. I dropped her off and thn has to head back to my place in Manhattan but the un set while we were in the movies... I was nervous because I hve serious issues driving at night. I dropped her off, committed to getting me and y car home and I ghit the highway. I squeezed the steering wheel soooo tight my knuckles hurt I prayed that God would just get me home safeky... then it hit me. I'm alive! If He wanted me he could have taken me when I first has the stroke.... and He didn't. I realized that the fact that Im still here means Im meant to be therefore nothing bad will happen to me as I dive home tonight... We're not here by accidnt... That you firsat survived the stroke, your surgery and now this car accident should only affirm that you are herew because He wants ou here. As I drove I thought" I csant work helping people the way I used to s why keep me alive at all...? Well the answer I came to is that I will find s ither way to reach out to people and help them Though I lan on returning to clinical medicine soon I've started with research for now and I know ythat he's going to make use of ny abilities or else why would my life have been spared? Its because there's something I'm yet to do.... You're going throug Hell right now but just keep going on the end of it, when you get out you'll have the bestest reward just hold tight and stay true to HIm AND YOU WILL GET THERE i KNOW YTIS BECAUSE YOU ARE ALREADY HERE. aFTER ALL YOU'VE BEEN THROUGH. iF EVER THERE WAS A PRECIOUS LIFE IT'S GOT TO BE THE ONRE THAT WAS NEARLY CONDUMED BY THE GIRE ONLY TO BE SNATCHED TO SAFETRY TIME AND AGAIN. i KNOW YOU'RE NOT LIVING THE WAY YOU WANT TO LIVE, iM NOT EITHER BUT YOU WILL AGAIN AS LONG AS YOU DON'T GIVE UP. Dont ever give up Katrina. EVER! YOU SURVIVED FOR A REASON THAT i CANNOT TELL YOU WHAT THE REASON IS DOES NOTHING TO DIMINISH THE FACT THAT THERE IS ONE. pLEASE GET HELP. i LOVE YOU FROM HERE AND i DONT WANT TO HEAR OF YOU EVER HURTING YOURSELF. i KNOW AND i GET YOUR PAIN BUT PLEASE DON'T GO FIND SOMEONE TO TALK O HECK IF YOU WANT WE CANTALK BY PHONEi'LL NOTE YOU MY CELL NUMBER YOU CA N CALL ANYTIME i GET IT. i HAD A CRAPPY DAY YESTERDAY... ITS OVER A YEAR AND i STILL GET THE SUPER SAD iVE GOT TO GET IN BED AND CRY DAYS BUT TODAY IS SOOOO MUCH BETTER. aS LONG AS WE WAK UP EACH MORNING THERES ALWAYS HOPE FOR US TO BE BETTER LET ME KNOW IF YOU WABT MY NUMBER WE CAN TALK, KICK IT OR WHATEVER YOU KNOW UNTIL YOU'RE EELING BETTER LOOK BACK TO YOUR GRADUATION AND ALL THAT YOU'VE ACCOMPLISHED WITH SO MUCH ON YOUR PLATE YOU ARE A FIGHTER DONT EVER GIVE UP PLEASE:O)

I'm very glad to hear of your good news ;o0 I'm also happy to know that you're both hanging in there. It does get better, with time but of course every stroke is different still, I firmly believe in our ability to heal as long as we keep at it )

you probably have some idea but I really needed thise chuckles today.

I finally got around to taking a pic of the mirror therapy to show you the setup. Its a lot easier to understand in a picture so here goes... as long as I figure out how...

I am soooo happy or you both ) Finding ways to keep enjoying our lives is critically important. As you know we are in a realy tough fight but happy days like you two had will remind him exacty what you both are fighting so hard for and it akes it all worth it ) Congratulations and awesome caregiving job )

Brag on Asha. its definitely something to be proud of cngrats to you ,him and the rest of your family )

great blog Asha thanks for writing it. ) I haven't forgotten about you and the study @ UMDNJ/NJIT( your alma mater). I go for my functoinal MRI (fMRI), which is part of the enrollment in the study, this Friday and I should have lots more contact info for you then. the test is scheduled for 3pm so expect a note from me Friday evening. till then, take cae and I look forward to your participation and meeting you in prerson since you always have such positive comments to share here ) Till later ~Ory

Hi Asha. I would try the 'ear bud ipod therpy' I dif which invlves listenng to music wit the left ear bud only for a while then both and then back to the left. The problems you're describing sound like highr sound processing, the wahat where of a sound and maybe if you increase te stimulation to the system by listening just though the left for a little while yo might see a changr. I have n idea if this will work but it cant hurt and it seemed to hlp my hearing problems If you give it a go please let me know how it goes for you... and thanks for reading it and for your feedback ) Best

thank you so much for sharing your insigfts from your experiences wit William. I think you did exactly the right thing for his arm. I'm orry other clinicians weren't more hlpful. I recognize that there's a lot we ont know and part of my grand hope for this book is that other clinicians will learn something from my experience and the experiences of other's I've spoken to so we can do a better job overall. The things I I mentioned in the excerpt as having surprised me really weren't writte n any text I've ever read so how could MDs possiby know... Everybody's got things to learn ) I'm grateful for you tking the time to read and write such insightful comments especially when I know your hands are full. The book is constantly writing itselfd in my mind but I will put fingers to keyboard and crank out some more soon ) thanks so muchll )

thanks ladies. Se I would love to hear more about what you've noticed with Ray. Anything you could offer would be greatly apreciated. My neurologist friends have enjoyed it so far because like me, they had never heard about certain post stroke problems so any more I can add , all the better ) Jeanie I will put double space breaks in when I write the next section ) thanks for reading and giving feedback I really aporeciate it )

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.

WEll for the stress and drama you were hving it's probably a good thing in some ways that yoou'll be done with it. I'm glad you can still look on it as a positive experience overall. It's always better to not be bitter and you certainly seem at peace ) and that's a good thing

thanks so much Jule ) I don't know how to make the little "you rock" smiley face dude but if I did I would cuz I think you rock too )

thanks a lot. I'll try to repost it here again.... drumroll... :oP http://www.wbgo.org/internal/mediaplayer/?journalID=jrnl2011-110527-article1&type=journal

Hi folks I just got the link to my radio interview an here it is...ink http://www.wbgo.org/internal/mediaplayer/?journalID=jrnl2011-110527-article1&type=journal rnjoy ;o)

I had this and other speech problems after my stroke even though speech and language shouldn't have been affected since my stroke was right sided and thy are usually ion the left side of the brain... WWell, i couldn't read aloud in the beginning either and my voice hd no volume. I also was terrible at coordinating breathing with speaking.. My brain forgot how to breath and speak at the same time so I'd got o say a word and suddenly Id be gasping for air It was weird. I had a speech therapist for a few weeks after the stroke but I kept on running my mouth and now it feels back to normal I even gave an hour long speech in front of about 200 people and didn't faulter with my speaking and I was able to read my slides without difficult; it gets better ) Promise, it does get better just keep talking and try singing. Other weird thing I didn' notice till many months after but I ha lost my rhythm. I couldn't keep a beat or sing song ltyrics in timeith the music at all but even that has gottwen better I listened to my ipod and sang, in my head cuz im no singer but no I've got rhythm again. Its so weird the affects I had that I wasn't expecting because as a neurologist I was aleays examining mysef for the usual defecits which I had but these other things I did not expect, like speech problems, lack of rhythm and timing but they got better )