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Didn't I mention I was writing a book..? here's an excerpt


thephoenix

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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 :o) :o) 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 :o) 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 :o) 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.

 

 

 

 

 

 

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Wow, lots of insights there. I could have told you some of them, not because I have them myself but because as an observer of Ray I can say: "he has lost this, he can no longer do that". And as he has had five strokes I guess I should have documented each one as I now cannot remember when he lost a particular talent or movement, I only know what he cannot do now.

 

Oriana, I am sure your book will be a hot item, you write so well and as it is autobiographical people will believe it because you have experienced it.

 

Bravo!!!

 

Sue.

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Wow. This is great. I started reading but I have trouble following line after line with not breaks. Is it possible for you to put more breaks in your writing. I am really interested in reading this post. remembertolaugh, Jeannie :cocktail:

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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 :o) Jeanie I will put double space breaks in when I write the next section :o)

 

thanks for reading and giving feedback I really aporeciate it :o)

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Oriana,

I love it!!! I must encourage you to plow on. This is good.

It was interesting to hear about the hearing ..only in one ear? Wm uses hearing aids and I am not sure if that is a problem. He hates the hearing aids and usually does not use them. He hated them before his stroke. Now I get the lovely job of cleaning them and putting in the batteries and adjusting them in his ears. I don't know how well they work.

I do appreciate any advice that you have on exercises. Kicking I will have William do more.

The lack of energy is the most daunting part of stroke. One good work out for the day and William is wiped out.

I am into pool therapy. I have found that it works well for William.

I learned alot from your excerpt. The doctors do not explain all that much to us in the hospital.

The swallow and speech part was difficult at the beginning. Wm was a right brain ischemic stroke. He did speak in a whisper. I presumed that the vocal chords were affected. He has gotten strength in his voice back. i encourage singing.

I do think that more awareness of the urgency of time is needed. I called 911 instantly and Wm did not get TPA until almost 3 hours later. I asked for TPA and the procedure to suck the clot out. (I can't remember the name of that procedure). They were unawae of it. My son, even called the ER doc and spoke to her. My son was doing his residency in anesthesiology in NYC. He was aware of all of the latest stuff being done in NYC. But, we are in Houston and they were not doing all of that here.

Wm left arm got swollen while in the hospital. I am nt sure why this happened. But, that made it impossible to get any OT. They just said that the arm is swollen and we cannot work with it. I learned that compression would push the fluids back out of the arm and into the major part of his body. I suggested this to the OT, but they were not interested. I brought it up to the doc. He said that that was a possibility. I just took it upon myself to wrap the arm and compress the arm until the fluids were pushed back to where they should be. This got rid of his swelling. I presume that the muscles got too weak to keep everything where they should be. Plus massaging the arm and manually pushing the fluids back up into the shoulder.

Ruth awaiting your next excerpt. anticipating.

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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 :o) 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 :o) thanks so muchll :o)

Oriana,

I love it!!! I must encourage you to plow on. This is good.

It was interesting to hear about the hearing ..only in one ear? Wm uses hearing aids and I am not sure if that is a problem. He hates the hearing aids and usually does not use them. He hated them before his stroke. Now I get the lovely job of cleaning them and putting in the batteries and adjusting them in his ears. I don't know how well they work.

I do appreciate any advice that you have on exercises. Kicking I will have William do more.

The lack of energy is the most daunting part of stroke. One good work out for the day and William is wiped out.

I am into pool therapy. I have found that it works well for William.

I learned alot from your excerpt. The doctors do not explain all that much to us in the hospital.

The swallow and speech part was difficult at the beginning. Wm was a right brain ischemic stroke. He did speak in a whisper. I presumed that the vocal chords were affected. He has gotten strength in his voice back. i encourage singing.

I do think that more awareness of the urgency of time is needed. I called 911 instantly and Wm did not get TPA until almost 3 hours later. I asked for TPA and the procedure to suck the clot out. (I can't remember the name of that procedure). They were unawae of it. My son, even called the ER doc and spoke to her. My son was doing his residency in anesthesiology in NYC. He was aware of all of the latest stuff being done in NYC. But, we are in Houston and they were not doing all of that here.

Wm left arm got swollen while in the hospital. I am nt sure why this happened. But, that made it impossible to get any OT. They just said that the arm is swollen and we cannot work with it. I learned that compression would push the fluids back out of the arm and into the major part of his body. I suggested this to the OT, but they were not interested. I brought it up to the doc. He said that that was a possibility. I just took it upon myself to wrap the arm and compress the arm until the fluids were pushed back to where they should be. This got rid of his swelling. I presume that the muscles got too weak to keep everything where they should be. Plus massaging the arm and manually pushing the fluids back up into the shoulder.

Ruth awaiting your next excerpt. anticipating.

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Oriana thanks for sharing your book with us. I think you may remember I ask you about Larry's stroke which was a "right brain ischemic stroke" that affected his left side. His left carotid artery was 100% blocked and right artery 50-60% blocked. Two surgeons differed on what caused the stroke. Larry's extensive heart tests were all normal. The first surgeon said the right artery was the cause. The second said he didn't think so and said it might have been caused by something in the brain. So far, no change, no surgery. As some have said on this board, the cause of their strokes was not determined.

 

I copied and pasted your post to Word and read it that way. I can then enlarge it and space it out.

 

Keep up the good work. :Clap-Hands:

 

Julie

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hey Orianna:

 

great blog. I learnt few things from this blog. I also have hearing problem in my left ear.the problem is my hearing is fine, but I can never identify where the sound is coming from, is it from above, below,left or right. I can never figure that out.so if I am calling my family & they answer back, I can never tell where exctly sound came from. can you suggest any therapy I can try to fix that problem

 

Asha

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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 :o) Best

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Oriana excellent & I know from our personalconversations you have the gift of empathy withan ecellenytability to teach )& bring understanding.

 

one of my biggest complaints was not being recognized as having the extent of damage I have.

 

I really had no idea what wasgoing on with me & why I was in hospital with staples & bandages on my head . my family & close friends were all outside of Calgary by 3-4 hours-- by myself I figured I must have had a heck of a vehicle wreck - as I remembered nothing about my brain surgery & ICU for those few months. did not remember an accident - bur =t what else couls it be first thing I asked my husbandon his next visit was:did I total my (nearly new) 4-runner? of course he had no idea if about what I was talking.

 

 

my request would be to remind/ advise clinicians to remember no two strokies are the same and to ensure each patient understands to their best ability just what has happened to them & why they are there.

 

 

I had a nurse forcibly throw my pressure glove @ me and insist I put it on myself I told her I couldn't but she kept at me - sating it would be good for me. I drew a phy PT into theproblem & he told her - not a chance it usuallt toojk 5two therapists to get it on. she then got out of my face

 

of course after the fact I think of what Ishould have said. think qbout it - iot would be like trying to p7t one hansput a condom on a flacid penis wioth one hand.

 

I rhihk your advive is vverygterat! that your advice is remarkable & helpful

I'll wtite more latewr gotta go now - I'm fallingf askeeo ih

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Dear Oriana,

Good work! I think your book is much needed. You write very well and with personal experience to give as examples, you have a winning formula. I,too, have left sided neglect, not severe, but there. And like you I began driving 3 months after stroke, but I live in a small town, so traffic is not bad. The letter a eludes me also at times. For some reason right after the stroke, my hearing was enhanced. Everything seemed noisier, its getting more normal now. I can hop, skip,kick and dance--but for several months qafter stroke my left armwould not swing naturally when I walked. It does now. Also I have vocabulary, but muscle weakness in face so talking tires me out (what a bummer!) And like you I must remember to take in a breath. Weird what stroke does. Did you get into the cliniclal trial you tested for? I am researching a saebo for hand and a bioness 200. My index finger and thumb on my left hand are recalcitrant. I want to play the piano again! I am determined to recover as much as possible--we cannot give up or give in. Keep up the good work--I know you will continue to recover yourself and help and inspire others in the process. Bev

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