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.

o Im sittin on the end of the chaise part of our sectional sofa. both of my feet are planted on the floor. I then put the all mirror standing up on the floor between my knees with my left ( affected leg) on the back side of the mirror and out of sight unless I lean left. When I lean right and look down I seemy right leg and in the mirror I see the reflection of my right leg which looks like my left leg. I know my left leg is behind the mirror but it is important that when doing this therapy you're not looking at the affected leg only the reflectinon of the good leg. you want your brain to believe its in control of the affected limb again so you dont want it getting the negative feedback of looking at an immobile limb So , I then slid my feet forward, extending both legs. that part is easy to do, even wiht my left leg; it wasn't always easy but I hve decent quad strength now{ key word being now} and flexing my left knee has been my real problem, and still is. The next part is where the mirror magic happened. I started to slowly bend my right knee thus sliding my right foot back towards my body so my knee would bend further. I looked in the mirror as I did this and it looks like Im bening both knees. I 'm figuring behind the mirror, where I can't seeit my left leg is still stting stillextended, unaffected by my mind thinkinh bend your legs Ory but then my left knee started to bend! It wasnt strong or full range but it wa more knee flexion than I usually get! I got to about 90 degrees at my knee! So I just kept looking in the mirror enjoying the positive reinforcement of seeing what looks like both of my leg bending to my command and when I looked at my real left leg I got to see it bending too, enter even more positive reinforcement. ) In that position I also tried lifting my toes and flexig my ankle. Hey, its a start ) and its painless, free and harmless so why not; I'll be dong it again tonight )

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 )

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.

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 )

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

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 )

thank you all so very much for your kind comments ) Asha I have not forgotten about you. The researchers already know that I've been in touch wwith a NJIT comp sci alum so they will be expecting you but these science oober nerd types are so busy they're slow to get back t me regarding what contact info I should give out but I definitely have not and will not forget about you )( :oP Guess its time to update my profile pic, thanks guys ) I dont have to tell you how nice it is to receive a compliment after your face, body and so much of you has changed ) Gotta dash Im off to get my walk aide, I will post more about that later because think its going to be great. I will definitely update you all about how it goes ect. Bev,opening and losing your hand is great, Im still working on that but Im going to keep doing my at home mirror stuff until the study dudes come through. Hows the CEA vs stent situation goin? Good I hope )

No need to apologize Lynn. Im sorry our neighbor seems to be such jerk. I sincerely hope this all works out quickly for your family and that all of his 'issues' whatever they may be quickly get resolved. ) take good care and try to enjoy this pleasant turn in our recently crummy weather )

That's a beautiful thing. I totally get the annoyance of stroke saturating every aspect of our lives. I'm there too and I hate it but Im still physically impaired so its constantly reminding me... Every time I try to do something and can't... it's there but some day ... someday it wont be... and I can't wait for it. Thanks for sharing. That was a really wonderful thing Sam has done. Just wonderful )

o Im sittin on the end of the chaise part of our sectional sofa. both of my feet are planted on the floor. I then put the all mirror standing up on the floor between my knees with my left ( affected leg) on the back side of the mirror and out of sight unless I lean left. When I lean right and look down I seemy right leg and in the mirror I see the reflection of my right leg which looks like my left leg. I know my left leg is behind the mirror but it is important that when doing this therapy you're not looking at the affected leg only the reflectinon of the good leg. you want your brain to believe its in control of the affected limb again so you dont want it getting the negative feedback of looking at an immobile limb So , I then slid my feet forward, extending both legs. that part is easy to do, even wiht my left leg; it wasn't always easy but I hve decent quad strength now{ key word being now} and flexing my left knee has been my real problem, and still is. The next part is where the mirror magic happened. I started to slowly bend my right knee thus sliding my right foot back towards my body so my knee would bend further. I looked in the mirror as I did this and it looks like Im bening both knees. I 'm figuring behind the mirror, where I can't seeit my left leg is still stting stillextended, unaffected by my mind thinkinh bend your legs Ory but then my left knee started to bend! It wasnt strong or full range but it wa more knee flexion than I usually get! I got to about 90 degrees at my knee! So I just kept looking in the mirror enjoying the positive reinforcement of seeing what looks like both of my leg bending to my command and when I looked at my real left leg I got to see it bending too, enter even more positive reinforcement. ) In that position I also tried lifting my toes and flexig my ankle. Hey, its a start ) and its painless, free and harmless so why not; I'll be dong it again tonight )

thanks everybody for you insights and kind encouragement. Today is a much better day ) Yesterday was weirdbut its over and Im not upset with myself for crying a lot in the end it felt better getting it out. In the end I think I managed to cry just enough to get through my radio interview without too much sobbing. It will air next Friday on WBGO which is a Newark based jazz station on cchannel 88.3 AM in the NY NJ area. TTim and I will be on tv, channel 13 at 6pm or on NJN whi vh is New Jersey Network, you'fd have to google NJN and check your local listings... if you're interested. I didn't really say anything groundbreaking. I save all my groundbreaking for other survivors and caregivers LOL :oP Oh, the mirror therapy I did last night...So Im sittin on the end of the chaise part of our sectional sofa. both of my feet are planted on the floor. I then put the all mirror standing up on the floor between my knees with my left ( affected leg) on the back side of the mirror and out of sight unless I lean left. When I lean right and look down I seemy right leg and in the mirror I see the reflection of my right leg which looks like my left leg. I know my left leg is behind the mirror but it is important that when doing this therapy you're not looking at the affected leg only the reflectinon of the good leg. you want your brain to believe its in control of the affected limb again so you dont want it getting the negative feedback of looking at an immobile limb So , I then slid my feet forward, extending both legs. that part is easy to do, even wiht my left leg; it wasn't always easy but I hve decent quad strength now{ key word being now} and flexing my left knee has been my real problem, and still is. The next part is where the mirror magic happened. I started to slowly bend my right knee thus sliding my right foot back towards my body so my knee would bend further. I looked in the mirror as I did this and it looks like Im bening both knees. I 'm figuring behind the mirror, where I can't seeit my left leg is still stting stillextended, unaffected by my mind thinkinh bend your legs Ory but then my left knee started to bend! It wasnt strong or full range but it wa more knee flexion than I usually get! I got to about 90 degrees at my knee! So I just kept looking in the mirror enjoying the positive reinforcement of seeing what looks like both of my leg bending to my command and when I looked at my real left leg I got to see it bending too, enter even more positive reinforcement. ) In that position I also tried lifting my toes and flexig my ankle. Hey, its a start ) and its painless, free and harmless so why not; I'll be dong it again tonight after Im done with ton'is excercise homework ) Toni's excercie homework will require m to lay down on the floor or a bed if more easibile on my stomach. I will then bend my knees like Im trying to do but kicks. I already know this will be tough given my knee eding difficulties butnothing ventured... Lesse, I think you might be on to something about maybe getting lower ater a day of gains.. I had a great OT session on Tuesay; I was able to etend my left arm fully whivh I usually cnnot do ) and then Wednesday hit me like a ton ofbricks. Maybe I was coming down...?

Been doing mirror therapy. I will detail my experience wit it last night below ) be right back

I did a radio interview todat with WBGO which is an am jazz radio station in Newark,NJ It should air Friday, 25th idk the time sorry I'll b able to provide a link to the broadcast when hthey send it to me so you can hear it online on their website...

you are all very welcome . They haventpublished yet so there is no trial name or anything and since it's nota drug trial it probably won't have a zippy acronym name butwhen I find out how it can be searched I will post an update. Interestingly they are doing brainmappingandppl with motor defecitsare showing activities insensory areas of the brain which I thinkis pretty cool. Myensation was completely knocked out @ firstbut it recovered thoughits still not normalbut I kno my brain has to be able to feel te position of my joints in order to accurately move and manipulate them.so if it improves my joint position sense, all the better :-)