thephoenix

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 )

I posted this on my fb for some friends and family. I 'm not sure copying it here will be adequate but I hop so ) Enjoy and keep on keeping on survivors! Surviving a Stroke « NJN News – New Jersey Public Television and Radio njnnewspublictv.wordpress.com Dr. Oriana Cornett had spent years studying

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

So,I live in New Jersey now; we moved from Manhattan across the Hudson rive to NJ in March. I love it there imensely but its been raining here all week and today it started to rain on my spoul. I'm usually in a much brighter mood but today I cried most of the morning... It was one of those, can't wait to get to my office, close my door and kneel to pray so I can cry afterwards kinds of days.. Weirdest thing I had a great session in OT AND PT yesterday but I woke up as usul with a bum left leg and I lefthand n arm that I still cannot control and use functioally. I was fine when I walked out of my home and got in the car. Somewhere along the drive, and its a short drive, I just felt it coming for me, sadness! A-freking-gain...? Aren;t you sick of seeing me cryiing...? I sure am sick of cryinmg but II kno better than to try and hold it in So I cried and because other than a radio interview I did today I got to be alone in my office, I cried it the H up. I prayed and cried and knelt and sat and cried and I blogged and cried and I talked with a survivor friemd p mine who was worried because Im usually picking her up ... Well, not today. Today was for cryingm just like it's for raining it cnnot be stopped it will bring healing right...? eventually Worry not durvivors I still believe healing is coming for me I'm deeply spiritual and I fully believe Gd has a plan for me nd that plan requires me to take this stroke and help my future patiwnts but here's the kick Im in the best position to really help others dealing with this kind of brain injury but without my hand and arm back Im going to be jobless ome July1.. I only worry now about when it's coming for me. The when is everything now I know I havent had to wait as long as many people here but it has bee just over a year and no matter how you slice it a year is a long time. I'm amazed, awed and inspired by the surivors that have been fighting this fight to get themselves back for years... That these rsiliant urvivors still have joy amd still keep trying give m rl hopwe. If they can hang in there and keep trying of course I can too...Thank you for fortifying me survivors ) If I can give back one tent of what I receive I will be happy )NOw that I got that out. Know I am not going to give up, not for a day a week or a minute I'm never giving up opn my recovery. Well not until Im recovered :oP

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 :-)

I'm sorry you're having such a hard time at work. I'm with you, also a Christian and we both know God doesn't like ugly. We all have lessons to learn; apparently she didn't learn much from her husband's stroke and that's a shame. You would think a caregiver would be mor understanding. All I can say is keep at it with your positive attitude. Pray on it and let God do the rest I bet she'll be surprised when her bill comes due. And with you I could't wsh anything as awful as a stroke on anybody but vengence is not ours and He doesn't forget who's got what coming. Just stay positive as you already are; I can hear your positive tone throughout what you wrote and that lets mre know you'll be ok Its only after having my stroke did I finally understand the phrase" there but for the grace of God go I.. Now I know I've survived by the grace of God. that same grace is what enables me to still feel so happy even though I have more difficulties than I ever ha bfore. That same grace is blessing you; I can tell by your pleasant tone. Even in this situatin where an unyhappy bitter person is trying to make you suffer... you're covered by God's grace in that you canspeak humorouly about her and the situation and stay positive which I know is not always so easy. hang in mayGod continue to bless and keep you )

forgot to ention. One ket tenet to retraining the brain and defeating ou learned paralysis is that you've got to keep the affected limb out of view. Whrn i do my mirror therapy at home my arm is behgind the mirror so OI can't see it. you want the experience to look as much like your affected limb is moving so don't look at your real limb- that will only reinforce the learned paralysis this therapy is designed to overturn Get those mirrors out survivor. You can find a simple contruct of a mirror box by going on youtube.com type in mirror box therapy and you'll see there are bunches of videos with ppl that mad thir own boxes and the excercises ythey do. It was first used for phantom limb pain then a didssease call regional sympathetic dystrophy, a very painful condition thsat can happen fter severe nerve injury. Its got a clear role in the stroke survivors but not everybody is aware of it, hence Im talking about it and encouraging it. Its free and safe and also invlvves no cost to you and requires no mdication or procedures. Just a mirror your good hand or arm , time and patience ) and most of us have those things. I'll try to post a pic of me doing it when I fget home so my crude techique is clear )keep on keeping on survivors )

jule I forgot to say Kudos to Larry on the hand opening. Once is a start and it should tell you ythe hardware (nerves, muscles) in the hand are still intact and functional. Now you've just got to update the software (brain and its ability to control the hand but Im very happy for tyou both that he was able to open his hand. I've been trying to do that for months and sao far Im getting nothing... I also get botox but still have so much tone I've never been able to fully open my hand under the power of my finger extensors but Im not giving up either )

) I'm excited about it tooo ! I've been stalking the researchers about when I can startfor now I have the university email address of the Physical therapist that will d o the initial eval. I met him last week but do not have his phone number yetr as soon as I hear back from hi I will blog his contact info.Jule, I totally understand the distance is no small thing if you're not in our area but maybe your husband can try some mrror therapy on his own, or with your help at home. I started doing some mirror therapy on myself after meeting with the researchers and all the data that says it works indicates you need about 2 goiurs per session. And we should do daily sessions for two weeks. I'll describe what I did and maybe Larry can try doing the same thing... I sat on the floor with my back leaning against our sofa. I took a wall mirror that we had not yet hung, we moved in March...I tuck the mirror under my left arm and lay my arm on the floor behind the mirror. The mirror I was using is pretty big, itss a wall mirror and is probably a square of 24 inches by 24 inches. It just fits under my arm and the bottom is supported by the floor the I rest my right hand on my lap. I look down into the mirror and it look like my left hand since the left is the mirror image of the right. I then opened and closed my hands multiple times while looking at the reflected (my fake left hand) in the mirror. Its kind of trippy since Im so un used to seeing y left hand move and it really does give you the feeling that my left hand is moving which was weird but good. the benefit to OT and the study is they have creative ways to make thids relearniing more engaging. I only lasted an hour fifteen minutes before the sheer boredom got to me nbut I'm going to keep at it an I'll set shorter timed goals to build up to the two hours. Also a good idea is to set up the mirror trraining and watch a movie at the same timt make the time pass. Since I did that I've been abletttro imagine mny left hand doing things which is something I couldn't do before. Its so weird but I lost the ability to iagine my left side moving normally but just a short while with the mirror and I can visualize doing things with my left hand. I still cannot do those things but that I can visualize doing them makes me thinbk my brain might be getting reqcquainted with the notion of hving left sided appendages. you know hhat they say the first step to fixing a problrem is admitting ytou have one well maybe my brain is now admitting I have a left arm and leg and as such is imagining uses for the,. While on the floor I did the same thing with flexing ands movng my knee and ankle... Still no controlled movement on the left but Im still going to try and Ill do more mirror therapy tonight... Best of luck and I will update everybody asap ) till then get out your mirrors and give it a shot ) it can't hurt and it may help so I'll be in the mirror )

I'm so glad you're in the area I will pass along that info asap. I too have spasticity and I stll get botox for it but Im not due for my next round till July. They didm't have the robotic arm thing when I was there but It would fit over my hand like an exo-skeleton, if you can imagine the arm in the teinator from the moves. Well my fingers were placed into loops on the underside of the robotic. The robot frame would then keep my fingers extended while I flexed my fingers individually. It was so exciting. I hadn't flexed my pinky in over a year at that time so you can imagine I could have cried ) Im so glas you're close those NJIT folks are crazy brainiacs and they were all very friendly ) I have a very similar situation although it sounds like you might have more arm movement than I do so far but my hand is always fisted. Im still tryng to just open it everyday... We'll get there ) I will get right back to you as soon a I get the PT guys contact info )

I have an interesting relationship with my AFO . I love it and then some days I just refuse to wear it. My therapist gave me the ok to wear it one day on, one day off. So thats what I do. I don;t wear it al all in the house but I do go outside without it and I sometimes work o without it. Mine is custom fitted and srticulated at the ankle so my ankle can flex as Im walking; the olde ones didn;t have that articulation and the ankle wouldn't be ranged at all. I've read what Peter Levine said about AFO's and I agree but only in paart. Wearing my AFo helped me drasticALL INCREASE THE LENGTH OF TIME i COULD WALK AND THEREFORE INCREAED MY DISTANCE. bOTH OF THOSE THINGS ARE WHY iM ABLE TO WALK WITHOUT IT JUSST USING MY CANE. IF i NEVER HAD MY afo i DOUBT i'D BE ABLE TO WALK OR WORK OUT WITH THE STAMINA i HAVE NOW. THE THING i DID THOUGH TO ENCOURAGE MY BRAIN TO RELEARN HOW TO CONTROL Y ANKLE IS TO GIVE MYSELF LOTS F afo-LESS TIME. I think walking with it a lot helped me walk better in general and I think thats why my walking is continuing to improve becaues I've built up ,y stamina greatly but I needed the AFO to buil it noew that I have stamina though I do walk without itas often as I can bear. I even worked out in our gym without it this weekend. I did 20 minuteds on the elliptical glider ( my longes t time yet. I lifted weights and then I walked for 35 minutes on the treadmill at a pace of 0.8 with an incline of 2.5 LL WITHOUT THE BRACE. i THINK ITS IMPORTANT TO NOT GET TOO CAUGHT UP IN COMPENSATIONS CUZ IF WE STAY COMPENSATING WE WONT MAKE OUR BRAIN HEAL AND RECONNECT SO i'M AN afo FAN BUT ONLY SOMETIMES ) Best, may we ll just keep the faith an trust and know we can heal and we wll heal as long as we keep trying to heal ) Believe me Im tired but Im still trying; it hasn't been as long for me as its been formany of you but a year is a long time still and th first year is especially roller coaster-ish... but lets just hang in together :)

Hi Katrina, I don't know where you are but if you're in the NY NJ area I hae news and maye somre free OT or you. Read my latest blog; its about a research study Im getting into that has a lot of promise in helping me recover my hand and arm They're not working on leg, gair, baance orstairds but I'd love to have my arm an hand back immediatly. there are no drugs, pills injections or anything like that. Its free and the need stroke surviving participants. I'm waiting desperately for them to email me ad tell ,e whwn I can start. I really think it can help me. and possiblry many others. they're using technology to help us with out arms and hands and its totally free for participants. You only have to figure out how to get yourself to the csmpus; which I know isn't always a small or easy thing but if it csan be done I really think this project will be worthit So read m lastest blog for more details and let me know if you're interested. And that goes to anybody who is still working on recovering their arm or hand who is reading this. If you can get here, yo;'re welcome too ) The mAIN ARM OF THE STUDY IS TAKING CHRONIC STROKEE'S SO YOUR STROKE DOENT HAVE TO BE RECENT AT ALL. mINE WAS 1 YEAR AAGO AND i'LL GET IN AFTER MY EVAL WITH THEIR pt.tHEY HAVE A HUY IMN IT THAT STROKED 10 YEARS AGO AND HE GOT DOME AMAZING RECOVERY AFTER 2 WEEKS! I'm vey excited about this project and I believe it will help me and may hlp many f you too ) So pleasae read the blog and let me know ) Katrina, keep fighting. Don't ever give up. Wgen I read about you lifting the laudry basket I alost cried with joy. I kep thinking yup, someday that wll be me too I'm just going to keep at it )

Hello Everybody. if you don;t already know from my blpogs and profile info I am a atroke neurologist who is also a stroke survivor. I was 37 when I stroked last April. I still have a ways to go in my recovery. though, Im greatful to have regaiined much of my former independence. I still walk with an AFO and a cane and I have no real use of my left arm or hand but I may have found a way to get my arm back. I'm really excited about it because as many of you are; I'm pretty tired of living 1 handed in our 2 handed world. Anyway, I'm getting myself into a research project that's happening at the hospital where I work, University hospital of UMDNJ in Newark, NJ. The PM&R folks of UMDNJ have teamed up with these brilliant techno geeks at New Jersey Institute of Technology. They've designed research projects to enable them to better understand neuroplasticity and how it works in recovery after brain injuries like stroke. there are NO MEDICATIONS involved. they're using Virtual ReALITY (vr) TO TRICK THE BRAIN INTO THINKING THE AFFECTED LIMB ( FOR ME, IT'S LEFT) is working AND THAT EENABLES THE BRAIN TO RELEARN HOW TO USE THE AFFECTED LIMB. i'VE DONE SOME RESEARCH ON THIS AND THE'RE USING THE SAME PRINCIPLE AS Dr.S. Ramachandran who first described mirror box therapy for treating learned paralysis. Learned paralysis is what happens after a person has been paralyzed for a long time. After many attempts the brain learns that it can no longer control the affected limb. Once it learns that it kind of stops trying to connect to it and recovery grinds to a halt. If you trick the brain into thinking its controling the limb it will begin again at trying to control it long term. Its the same theory behind mirror box therapy which has been shown to work. I'm currently waiting t hear back from the researchers so I can be evaluATED BY THE pt THAT'S WORKING WITH THE RESEARCHERS. tHE pt WILL DETERMINE WHAT LEVEL OF THE STUDY MIGHT BE BEST FOR ME. tHHEY'RE INITIALLY LOOKING FOR CHRONIC ( MEANING STROKE NOT WITHIN THE PAST 6 MONTHS) SURVIVORS BUT THEY'LL EVALUATE ALL COMERS. tHEY HAD A GUY WHO HADN'T USED HIS RIGHT SARM FOR 10YEARS THEN AFTER SPENDING 2 WEEKS DOING THE INTENSIVE vr RETRAINIG THE GUY ABSENTMINDEDLY REACHED FOR HIS REMOTE CONTROL WITH THE HAND HE HADN'T USED IN 10 YEARS! wELL, iM VERY EXCITED ABOUT THIS POTENTIAL OPPORTUNITY TO GIVE ME MY ARM BACK ) i'LL TELL YOU WHAT i EXPERIENCECD WHEN i WEnT TO THEIR LABS. I t was painless and very cool.tHEY PUT A SPECIAL SENSORY GLOVE ON MY RIGHT HAND. tHEir FANCY CO MPUTER PROGRAMS TAKES POSITION INFORMATION FROM WHERE MY FINGERS ARE BASED ON INFO GENERATED BY THE GLOVE WHiCH IS ON MY RIGHT HAND. tHE COMPUTER DISPLAYS THE mirror image of my right hand on a screen. the mirror image of my right hand looks like my left hand so if I open my right,gloved hand and watch the screen; I see what looks like my left hand opening. I would do excercises with my right hand all the while my brain is getting the sensory experience that my left hand is moving. The NJIT folks have designed video games and robotics to assist. I put my left arm into this robotic arm and I ppayed a video game, while wearing 3-D glasses I had to make these blinking balls intersect and explode. The robotic arm would feel if I tried to lift my arm and it would assist my in extending my left arm as thats still hard for me. I even played a few keystrokes of virtual piano wityh my left hand! It was amazing but I was able to flex my fingers individually to strike the keys. I can't wait to be evaluated and formally admitted into the study.They're in open enrollment now. They will take people with all ranges of difficulty in their arm or hand. I even have spasticity and it is not easy to open my hand because of my high tone but there's a research track with excercises that will still beappropriate for me so Im going for it. I just wanted to share what I think ids a great opportunity for enhancing our recovery. Time committment is 5 days per week/ three hours a day on our camous and this schedule of training o ther machines sad in the VR environment goes on for 2 weeks. So If you can get to Newark and would like to get involved please comment and I wiillpass along contact info for the researchers and teir PT so an eval can be arranged. I think this could be the future of OT with regard to stroke rehab. an it was really exciting to play a few key strokes even on a virtual piano. you can look up mirror box therapy if you'd like to learn more about the theory and principle to their work. As always, all my best hopes, wishes and prayers for your continued recovery and peace and patience for the meantime )

Hi Kelli, My first inclination was to just say, yup stay away. He sounds like a not very niceperson though I know I'm only getting your side... Still, it seems like a pretty jerky thing for him to do I know people can't begin to understand all the changes a stroke survivor has to deal with but still most people seem rto be able to mudster more compassion than this dude. As I read the posts. I was like." yes, just stay away. Who needs more drama when waking up and getting through the day is enough drama for us already but then I read Lydia's response and although I also gree with Merichsens comment I think Lydia is right it's worth a shot and if he's still unble to be nice then bounce. Don't stress yourself, Our emitoions are much more tangled, confused and intemse after stroke and you don't need his negaytive energy. You can and may have to be the bigger person nd try to work it out but if he still behaves hurtfully, du,p him and up him fast _{ Sorry its a quote from amovie I like... } Sonny said that to C in the movie A Bronx Tale... I may watch too much tv LOL Good luck and cry here with us wheneer you ned to but the adult thing to do is what Lydia suggested although the kid in me wants to kick him in the shins on your behlf but that's probably not the most appropriate course of actiion ) Best, take care

PS.I just realized I misunderstood your question about full hemiparesis and rigt and left neglect together... For a long time neurologists didn't believe or weren't sure that right sided neglect happened at all but thats really because right sided neglect would imply a left hemispherelesion and left hemisphere lesions often are associated with ahasia and when a person can neither speak nor understand it's virtually impossible to tell if the have neglct. I'm pretty sure that the docs that tought right neglect didn't exist were wrong and it was probably just our inability to detect it due to concommitant language defecits... we can't test for it and therefore we can;t find it. I've never seen a person with bilateral hemispheric damage that severe that was awake enough for me to talk to and evaluate for neglect. y bilateral brain injury patients like gun shot wounds ot traumatic brain injuries such as motorcyle or car accident voctims are usually unconscious and therefore neglect is impossible to asess... That being said I wouldnt be shocked if it exists someh=where....