thephoenix

thanks so much for your comment Lesse and your very insightful and thoughtful quesions. Survivors often are completely unaware of their left sides, when the neglect is severe. I've seen people deny their own limbsand sometimes the limb isn't fully plegic, which means no movement whatsoever. they o so deep with the ognoring of their left side that they don't ove it, simply because to them it isn't even there... Its crazy the stuff that happens inside the human brain, healthy and otherwise. I have had patients that initially look like they have zero movement on their left sides only to find out that when I really work hard o draw their attention to their left hand or any left part to find that they can in fact move.... Its weird but ppl can have decent muscle strength but ignore the left side so completely that they don't move it... I watch myself walk on the treadmill too ) OMG Queens; we are the champions would be so awesome to walk to ) and Ive got it on my ipod... I can haer my next walk ) I used to think about the beauty of my stride when I'd run in Central Par. I always thought the way wew move is a beautiful thing. An amazemrnt of evolution and honing of structure and function. I used to run with my iipod earbuds in my ear but most of the time I wouldn't even turn on music or my podcast I'd just run and listen to the sound of my sneakers crnching on the path. I miss that feeling... the breeze in my face, generated by me propelling myself through the world... Those were good says.. My longest run 6.5 miles was just like that just quietly appreciating that my body could run because I wanted it to... How's this for irony; when I stroked the hospital and affiliated rehab hosp were directly across the street from where we used to run in central park. I shed lots of tears looking out those windows as I'd watch rurnners flit by from my wheelchair... Well Im walking so it's not all bad but I wont be satisfied till I can run again. But as I know I don't intend to give up I know I will run again ) For now I'll stroll on the treadmill and think about the beauty of a single step, while rocking out to some Queen ) We will get there )

Yeah neglect is one of the neurologists biggest fascinsations because ive had white people tell me their arms were mine and when I'd say but what color is my face? They'd say,"brown." I'd ask well isn't it strabge then that I should have a white arm? They'd just look a t me, srug their shoulders and say something like,"it's strange but that's just how it is apparently After seeing it so many times as a resident then fellow and beyond it always intrigued me but now I get it. I think neglect is an important part of human life. Not that profound neg;ect helps anybody but we are social animals. I explained it this way when /i gave my first talk. I told the audience,"you're all paying attention to me;and I appreciate that.If you heard a loud crashing sound in the hallway. you'd take mental notice and even tryto sort out what it probably was but you wouldn't feel the need to leave our chaur to go investigate it because you've decided to fgivre me your attention. That anility to ignore components within our space is an important part of hoe we llive in communities. When you go t a restaurant and the couple sat ythe next table over starts arguing; you might notice it but you mostly ignore it to give them privacy and becaues we were all taught to mind our business and not pry. We have to be ble to ignorcertan stimuli in order to finish a conversation without leavbing our seats to check out new stimuli as they come our wayNegect is just an'overdose' of a normal humn function; ignoring stuff we deem unimportant. The brain is amazing and its why I became a neurologist in the first place. Neglect was oneof the featurs that made me feel like I've got to understandthis organ... Its so wicked cool So to hve had milf neglect... Even though strokes really blow it was still amazigly fSCINAING TO ME mY NGLECT WAS VERY MILD AND i THINK THAT S WHY iVE BEEN ABLE TO RECOVER MOST OF MY EARLIER ATTENTION DEFECITS. i LIKEN IT TOJUST NOT BEING SO INTERESTED IN WHATS GOING ON ON THE LEFT SIDE. tHE SAME WAY NORMAL PEOPLE AREN;'T ALWAYS TURNING AROUND TO SEE WHATS BEHINFD THEM... THEY KNOW THERE'S SPACE BEHIND THM AND SOMETHING COULD BE THERE BUT THEY'RE JUST NOT PARTICULARLY CURIOUS OR INTERESTED IN WHATS GOING ON DIRECTLY BEHNFD THEM wELL, INITIALLY THERE WAS NOTHING PARTICULARLY EXVCTING GOING ON ON MY LEFT SIDE... iTS FASCINATING TO ME i AM HAPPY O SAY THAT LIKE MANY OF M OTHER PROBLEMS THE NEGLECT HAS FADED CONSIDERABLY THOUGH ITS NOT COMPETELY GONE. bEST OF LUCK IN YYOUR RECOVERY AND THNKS FOR YOUR COMMENTS )

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.”

My husband and I did another tv interview tody. It will air on NJN (New Jersey Network which is basically New Jersey public radio tv and radio station... It was longer than the first piece and Im glad it included my husbandand one of my work colleagues ) who is a great guy and a fatastic neurosurgeon ) Even the reporterdidnt know the air date but I will update here so I can let you folks see it i you're interested. They focused mainly on my story nd whats it like when a stroke doctor strokes... But I also put out the message that time is brin and the importance of getting help immediately. My final message, although I cried while delivering i,t was that stroke survivors have good reason to be hopeful because recovery is real;i t's hard but it's achievable )

Ok so my tv interview aired yesterday and guess what..? I totally missed it. :oP I was busy trying to bake a chicken and I was stuck having a terrible time getting the innards bag out of the chickens body cavity with 1 hand. I tried to use my left hand to hold the chickem while my right hand pulled the bag but come on its raw chicken a .k.a. very slippery. I fought and fought with it for at least half and hour then before I knew it it was 5:45; my interview aired at 5:00pm and when I turned to the station I was no where to be found. One of my work colleageues wrote me and said I did a great job but I still haven't seen it so I can't say...:oP I have aother tv interview with my mentor and also my husband today they're coming to my office today it will air on NJN New Jersey network which is basically New Jersey Public tv and radio. As for the first interview tyou can try going to www.wmbc.com type in your zipcode in the uper right hand corner of the page and it'll show you your local listings and maybe you can catch it on a rebroadast, I'll post when the NJN interview will air as soon as I meet the reporter and get to ask him or her. Anyhoo. it's so me btw to be so unabsorbed with myself that I missed my first ever time on tv.Its a true glimpse into my personality ) I don't tske me too seriously. Anyway hopefully this interview goes well ;o) Keep fighting the good fight it will pay off in the end ) As always all my best wishes, prayers and hope for your full recovery, continued progress and patience and peace for this loooong meantime )

beautiful Mantra ;o)Love it and Im glad it stayed with you it's a keeper ) when I was still in inpatient rehab. my mantra was Ory, cry as much as you need to but laugh mre than you cry ;o) I did that and it worked. my smile was the first thing to return to nearly 100% normal. I think it was all the laughing I did and still do )

Well. the reporter actually gave me the incorrect air date. The interview should air tomorrow, Tuesday May 3rd on WMBC between 5 and 6 pm. Good luck finding it. It was a very brief interview.. I wish I had more time to share a few things but such is time... I guess my 15 minutes are fast winding down. )

LOL at Rachel... sure anytime do you have an infant or young child you'd like me to sign ? LOL I jk of course but thanks all for the encouragement

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)

So many congratulations to you!. That Monster helped your gait, balance and stamina is awesome. It sounds like you have a great set of goals for yourself and goal setting is hugely important. I'm planning to teacj myself to run by the end of the summer ) Iused to be able to run 6.5 miles in NY's Central Park befotre the stroke. I havent run in a long time but I'm going to this summer I'm reading this great book Teaching Me To Run by Tommye K. Mayer. Tommye is a young woman who had a bleed, right brain so she had a left hemiparesis but yers after the stroke sge taught herself to run ) I figure Ill follow her methods and give it a go ) Its a good book and a fun read ) congrats so Kudos to you for that and so much more. you are well on your way ) I also drive but Im going to get formally evaluated at a rehab place near me that doesthese kinds of evals in survivors wit the assistance of a local driving school I'm sure I'll pass since I've already been driving a lot for the past 8 or 9 months... but I have to have my doc write a letter that Im ok t drive and though I know I can do it dsafely as I have been doing it safely for months I dont want to put her into an awkward situation of having to attest o something she has no knowledge of... My license wasnt revoked or anything I just had it for the ten years and it expired ut to renew it I know the hoopsd will have to be jumped through so I'm ready to jump... Beast of luck to you and I wiash you continued success on your recovery ) thanks for updating with our positive news )

Hi Lydia, Like everybody else I amsrry to hear you had another stroke. Wit the silver lining being that you do not sound asthough you've los much functionality. Still, I'm sorry you're having to deal withall f this again ad I hope it recovers speedily )

Great blog ) It was like a good movie... it'll make you laugh... it'll make you cr; although I only cried a little. I mostly just related completely. I've been having a bit of a rough dy and I think to cope I've been shoving my real feelings into a quiet corner in my brain whil focusing on putting on my "I'm ok face. Well, sometimes I'm not ok and I need to cry a little... just a little so it does't get to overwhelm me. After a few good boo hoo's I can usually pull myself together to face whatever I have to fac fir the day. thanks fir posting you enabled ne to face my stuff and let the stupid cry out already. If you've seen my blogs here befe=re you'll know I;m usually hopeul and very positive. I'm still hopeful and positive but I am alsp o tired of living like this I'm disappointed that my 1 yearanniversary is coming up and Im not further along I'm sure I've been in a plateau for a while andit's really trying to break me but I'm no wuss so I'm not going to let it. I'm convinced I will recover to very near normal I'm just not convinced that this recovery will come in tim to save my job/career/ sanity. Gotta ball a little and get over myself.. but thanks fir writing.I've been there and I canrelate. Its so hard facing all of our stuff but I hope you're proud of doing what you want to do amd not being further parayzed by the fear. that's a great thing and it takes real guts. you are no wuss )

thanks for updating us on your progress ) I'm sooooo happy for you I would never dream of stealing your thunder but I really do feel ;ike your victory is my victory and a victory for all of us as you've shown that the hard work we are all doing really does pay off. It may pay in small steps and small increments but they're small positives and thats what really matters in my book. Im so glad you kept at it. I remember not toO long ago you were feelling discouraged but things have started to turn because you hung in there, no matter how frustrating it was to not be where you wanted to be. you hung in and should be an example to all of us that when we get down or discouraged about our slow pace we've just got to hang in and keep trying anyway. So Happy for you ) YAY!!!!!!!!!!!!!!!

thanks so much for wwriting Jeanniebean. I'm with you what I see in my head regarding my recovery I believe is Gods' message to me that I'll be O.K. ) I know for that reason that I will get better and I will operte again and I will bring my message of hope and healing to as many stroke patients as I can reach and I will bring thhat message to other physicians because since we are in the same club I know they'll listen to me and then they too can give the message of hope and healing to their patients You see, it's a big plan He has for me and in order to do it I've got to be well and alive. tThat's why Im not afraid when driving anymore because I know He has work for me to do yet an He ill see that Im well and safe in order to do it ) pleased to meet you )

I think Im in a plateu phase too but Im just going to call it that and put away my kleenex cuz there's no way my recovery is finished ) I'm sory about your lost time McDube I dont think doctors know enough about our recovery and the brains true potential to heal. I know I only really learned about it during recovery from my own stroke but I sure an going to spread the wordto anybody that will listen. There is Hope after stroke and recovery continues as long as wed o. Im happy to hear you were able to toss the brace and cane :io) thas fantastic! Imhoping to shed mine before long too ) thanks or writing )

Hi Amanda, Thanks for posting. You definitly hit te nail on the head for lots of us I'm guessing. you certainly did for me. I have a friend who survived a left MCA stroke at the ag of 21. She still struggles with aphasia but is improving. She fully recovered er motor functions and now walks witout a cane or brace having a vey normal appearing git. She looks so good in fact it throws people off when she annoy find a word due to her aphasia. Everybody expects tat she's as 'normal' as everybody else but ince she isnt she has to deal with the stress of cluing people in to the notion that she still has difficulty with some things. Ad for me, Im still walking with a brace, a quad can and a spasic left leg that refuses to bend when asked. So its obvious to anybody that sees me walk that Im not normal. I told her I was sirry that she had to deal ith the expectations game. I told her that because of my gait , if I don't face plant constantly I get high fives and kudos but because she looks so normal; nobody sees when she struggles and that makes her feel isolated. At least you're here where you can share these things with people that get it, I too know hat my recovery will be a life long process but I sure am hoping the motor stuff will get better sooner rather than later. I agree with Asha adapting to and loving the new you isn't always easy but I'm sure it will help you feel peaceful and happy when you get there. Wishing you peace and happiness and god health too )

Thanks for writing Henry ) I hadn't heard of the fastest trial but I ill look it up. Please continue to post especially if you find it's helping or there's something that could be practiced by us other survivors. My best of luck for your continued recovery

Recovery is definitely the hardest thing I'll ever do. That's the bad news. The good news is I'm already doing it ansd have been for the past year. After this, nothing will ever be 'really hard' or impossible because I've already been facing impossible everyday for this past year and everyday I get out of bed, get dressed and go on with my lifr. nothing will ever be harder than that! If you find the pill let m know cuz I'll buy 100. 1 for me and I'll keep the rest for family, friends and my future patients because this is really hard and I hate knowing there are so many of us struggling. I feel your pain but I've got to remind you.:You're not working for nothing. You're fighting to reclaim your indepenndence and your life and that's worth all your hard work So even though it sux, keep at it. However a recovery vacation is not a bad idea either.I think it's good to stop focusing on all our stuff for a little while and simply have fun. We're still alive and joy should be a part of that life. Kudos to you for traveling on your own. Its scary but you faced it down and conquered it .That makes me proud in a cyber world stroke supporting survivor friend. I have another survivor friend who will not leave her home without her husband. She ambulates with a cane and an AFO and she can physicaly walk out of her home and get into a friends car but she mentally is too afraid. OI get that fwear but it's like 0aralysis all over again. I dont ever want to be paralyzed again so I refuse to let my fear paralyze me. I simply refuse. I told her she would probably surprise herself with what she could accomplish if she could manage to try and I tyhink one day she will; when she's found a way to manage her fears. I don't judge her for this, I totally understand it I was scared to death the first time I drove my car after the stroke... But I took some slow deep breaths and calmed myself and I did it. Now I stil l limit my driving to daylight hours, familiar places and good weather driving days but I also take taxi's to and from OT and PT by myself. It makesme feel great& independent and I love that so believe me I totally get and apreciate your joy at traveling alone on the bus.You're already doing hard and scary things. you should be feeling really proud of yourself. I had a get real Ory talk with myself one day. I had gone to the movies with my sister and my son. We caught a taxi dwntown oto the theater, got out and eventually went to see our movie. I didn't need any help going down the stairs, walking to the curb or getting into or out of the car I did all these things to get into my husbands car tons since the stroke So it hit me one day, why can't I just get into a taxi by myself? The only real reason was my frear at being alone that and the what if's.... Whsat if I fall...? What if I hav to open a door...?Well I fortunately haven't had falls at all and when I was an inpatient my pt taught me how to get up off th floor, if I did fall one day. So I knew, worse case scenario, even if I fell I could get up without help. Iprayed and ignored all the what if's and I decided Im sure I can call a taxi, walk out to meet it and open the door. I can tell the driver where Im going and go. So I did. It did worlds for my self esteem and now, the more I do it the more like 'me' I fel and that's great ! I celebrate you for taking that trip ) that was brave )You've got lots of fight in you. use it to carry you through all of these difficulties. Just be patient with yourself and do't expect to rush the process, no matter how much we all wish we'd just be better already it's going to take time. I used to feel like, "come on I became paralyzed in an instant for no good reason, why can't I just get better in an instant but... no such luck. My 1 year anniversary is fast approaching and I'm stressed about not being further along than I am | but all I can do is keep at it I beg you to do the same. Take more safe travels alone, it'll help you feel independent and good about yourselfand that will hopefully refill your tank to keep at it. Can you try telling your therapists that you'd like some privacy during your session. I hate being eyeballed wrecklessly but it happens all the time | I just ignore them but I always think," go ahead get an eyefull. If you had to deal with moving through the world in my body, you'd probably stay home and hide. But I'm not hiding punk!@" and I do say punk in my head because it makes me chuckle. The staring is seriously rude and annoying so other than ignoring them I mock them in my head and laugh to myself. Just know you're not struggling alone I'm struggling with you and lots of other folks too and all the blood, sweat and tears you're losing in this fight will be worth it in the end. Stay up and if you need a recovery break, take one ) Preferably one that requires a short bus trip ) please kee in touch

SO I SAY JUMP AWAY )

well, your post was completely succinct . I get no sense of the'new rambling oyou" as yo put it. Your entry was completely clear andif you write your homily likeyou did that post,I'm sure you'll do just great. I was aed to be akenote speakrer at my workplace because it's not so commonthat a young healthy stroke doctor winds up having an unexplained massive stoke.I was asked to discuss my experiences nd I knew that when I said yes that tere would be lots of tears and there were but when you speak from your heart the people will uderstand no mstter how much you cry or tutter. they'll be right there with you. The room was filled with nurses; a few that I used to work wth. they viited me when I was in the hospital, sent flowes ad cards and pryed for me in person, over the phone with me and in their churches.There was such an outpouring of love I would get emotional thinking about how grateful I was to them for just supporting me so much, enter mor tears. Well I rsined myself to not look at the nurses I know thinking if I did I would definitelyspew tears and sob like a baby. In the end, I stood for the hour and gave my talk which was full of chuckles and quite few tears. there were ome slides I couldn't even read because the content made me too emotional But you know what, it didn't even matter thaI was crying like a baby I wasn't embarsassed one bit,mostly because everybody was crying with me I got tons of hugs and handshakes from people I hadn't yet met and it was cathartic and healing for me. I didn't feel ready but Im so glad I did it, One of my messages for the nurses that take care of brain injured patients is that i's ok for them to give teir patients hope I told them how two of the nurses did that for me when I was in the hospital and I related how I thought we didn't always do the best job of giving our patients hope because we're so scared of giving false hope we stay extremely vague when it comes to their recovery. Its somethingIm goingto change about my practice when m seeing patients again and it meant a lot to me that they get that point. I was afraid it would be lost in all of my sobbing. But it wasnt I had teary eyed nurses whom I'd never before met come up to me and say,"I'm going to do better. I'm going to tell my patients there is hope after stroke and that they can recover.if they're willing to put in the work.The two nurses tat gave me my first glimmer of real hope were named Mercy and Faith )whenI met them after they introduced themselves I repeated their names and said "oh Mercy and Faith good cuz I need both" I'm sure if you find a message you want to relate to the congregation and you speak from your heart you will be fine. If the emotions come, let them come as long as you're being yourself and relating something of grat importance to you let the tears out.I've since been invited to speak at three other hospitals and 2 support groups in the area. Soma previously severlyaffected patient who is recovering and they left with a bit of a different sense of their patients potential outcome and that oes my heart good because Mercy and Faith helped me tons by not being afraid to be positive and I was grateful that more nirses will now be out there doing it for their patients agood came from all my tears and Im sure a lot of them will approach their patients with a sense of hope. They don't often get to see people after or during recovery. they see them at their worst ad their outlook becomes shifted to a negative view of stroke outcomes because that's all they see. I was there to represent the possibility of recovery for their patients. Find a message in your homily that means a lot to you and tears or no tears youll be great )

Sorry Linda I just saw your question. The name of te book is Stronger After Stroke. its written by a lay person but as a neurologist I felt it held water and was quite accurate and very encouraging I'vre read it 2-3 times ) I forget the autors first name but I remember hi last name is Levine. Best

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 )

I'm glad he agrees o try it when I pened my office door I really could have fainted ) I practice what I preach and I know how hard and annoying it is but Im committed to it )It's like modified constraint induced therapy and studies showCIT works so I figure I'd rather be extrememly annoyed for a few weeks to months than live 1-handed for the rest of mylife. I'm only 38 so that's a lot of life yet to live and I'm not so interested in staying like this ) Nag on )he'll thank you later and give you two high fives too ) Best