hi pheonix:

 

could you please send me or give me contact info, so that I can sign up for this study too, I am in NJ & NJIT Computer science Alumni. Thank you so much, your blog has given me so much hope for my left hand which is very spastic, so even though I have movement in shoulder & elbow because of my hand, I can nt use my left hand.

 

 

Asha

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 )

hi this is exciting news I would love more info as far how I can also sign up for this study I struggle so much with not being able to use my left hand I have to depend on other people to tie my sneakers thank you for any info you can give me

Thanks for sharing Oriana and best of luck with this therapy. I would love for my spouse to have this kind of treatment. We could not afford to travel there but maybe someday we can have the same treatments here. Larry's left hand and arm do not move much. His left hand is more relaxed due to the Botox now but it is usually clenched. He opened it once after taking a shower so I could dry it and that was a first. His left arm moves back but he cannot move it forward. Keep us posted as I am excited for you. :bouncing_off_wall:

 

Julie

) 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 )

Thanks for sharing Oriana and best of luck with this therapy. I would love for my spouse to have this kind of treatment. We could not afford to travel there but maybe someday we can have the same treatments here. Larry's left hand and arm do not move much. His left hand is more relaxed due to the Botox now but it is usually clenched. He opened it once after taking a shower so I could dry it and that was a first. His left arm moves back but he cannot move it forward. Keep us posted as I am excited for you. :bouncing_off_wall:

 

Julie

 

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 )

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 )

My husband (two hemorrhagic strokes 2009) left arm, left hand desensitization and other deficits said, AFTER I READ YOUR BLOG/POST TO HIM:

 

"I think it's exciting and I look forward to hearing more about the progress and intricacies.

I don't know if it applies to me since I'm not as damaged as many; my problems are more in the arena of desensitization.

But who knows what benefits can come out of talented scientists trying this approach. Thank you for telling us."

 

 

And thank you from me too,

Rachel

I am excited for who ever can benefit from this clinical research. I a firm believer of clinical research. I myself do not need this clinical research. But I have friends that could and would like to know the formal clinical research name please. I want to check the data basis.

I was in a clinical research fo r a robot arm, for fingers and forearm. It was the last thing I needed was my fingers and forearm. I could not pour a cup of coffee from a pot of coffee. I had success at the end of the time period. And your right commitment is the key and finishing the program. Thank you for the info. remembertolaugh, Jeannie :cocktail:

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 :-)

Looking forward to updates and any links when they become available. Best of luck with this.

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

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 )

GENIUS!! I am so hopeful for you and your techo-geeks. This sounds wonderful. Anything that can be healed naturally without Medications (and their potential side effects) is always a bonus. Good luck and we'll be thinking of you!

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 )

I finally got around to taking a pic of the mirror therapy to show you the setup. Its a lot easier to

 

 

 

understand in a picture so here goes... as long as I figure out how...