Mare I would totally try it on Frankie!!! I found that machine amazing and I know Kath did too as she has already ordered her unit. I am going another route to try and get mine. I am in touch with my OT at home and she is working on it for me but if I cant get it through her I am going to call my doctor and have him help me out because it is way too cool to pass up!
I am curious if it can be used with e-stim? I will have to check that out, stim my weak muscles and put the sEMG on my over compensators.
Will keep you posted.
Hugs,
Amy 20 Yeard old ROBPI from MN
Myotrac for use in BPI
-
hope16_05
- Posts: 1670
- Joined: Tue Jul 01, 2003 11:33 am
- Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
- Location: Minnesota
- Contact:
Re: Myotrac for use in BPI
Amy 28 years old ROBPI from MN
-
F-Litz
- Posts: 970
- Joined: Fri May 26, 2006 6:53 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
- Location: Ambler, PA
Re: Myotrac for use in BPI
How will parents learn how to use this machine - how to choose the muscles...etc. What to make work what not to?
(a.k.a. will you be writing a book about this?)
(a.k.a. will you be writing a book about this?)
Re: Myotrac for use in BPI
We are writing the book together, I guess 
Check out the forum!
Kate
Check out the forum! Kate
Re: Myotrac for use in BPI
I'm pretty sure it can't be used at the same time as e-stim, as the e-stim would totally overwhelm the electrical pickups of the machine. sEMG triggered estim works because the sEMG part is first, and then e-stim kicks in.
BTW, there ARE implantable systems that have a pickup on the nerve, to detect when a nerve signal is being sent, and then they can either stimulate electrodes in the muscle or "amplify" the nerve signal further down. But they still need to be separated in space, otherwise you have a feedback problem sort of like having the microphone right next to the speaker...
Kate
BTW, there ARE implantable systems that have a pickup on the nerve, to detect when a nerve signal is being sent, and then they can either stimulate electrodes in the muscle or "amplify" the nerve signal further down. But they still need to be separated in space, otherwise you have a feedback problem sort of like having the microphone right next to the speaker...
Kate
Re: Myotrac for use in BPI
I didn't mean my reply to Francine to be flippant! It's just that I went out and bought this machine with one concept of how it would be used, but that was completely turned on its head by the experiences of the adults and older kids who tried it, who could communicate and interact as they used it. I think it will be a learning experience for all of us who are using these devices or similar ones, which is why I wanted to try to gather our experiences together in one place.
I don't think there really is a guidebook on these techniques. The very fact that adults at Camp could use Joshua's gadget to reconnect with muscles thought to be deinnervated for decades turns so much of the "common wisdom" about this injury completely on its head! I can't wait to continue to follow the experiences of others using this technique, I have a feeling many more relevations are in store.
Kate
I don't think there really is a guidebook on these techniques. The very fact that adults at Camp could use Joshua's gadget to reconnect with muscles thought to be deinnervated for decades turns so much of the "common wisdom" about this injury completely on its head! I can't wait to continue to follow the experiences of others using this technique, I have a feeling many more relevations are in store.
Kate
Re: Myotrac for use in BPI
And just to let you know... you CAN use it on kids! Kate and I put it on Juliana (who will be 8 in a few months). We had been told by more than one doctor that they thought her biceps might be ruptured. But that certainly they were not working. She has(had?) all kinds of ways to compensate for the lack of internal rotators and lack of biceps. Well, don't you know.... Juliana got those biceps to fire!! She also got her tongue to wag a bit... but that only helped to make me and Kate laugh (Juliana too!). Even without our machine, she is trying to practice this movement. We are not at all ready to add resistance as the movement is so new for her. But she "made the yellow light come on."
Kate, just so you'll know. We were at a friends house yesterday and I told Juliana to show the mom (who is a friend of mine) her new "trick". She started to cry! How can you do that? she wanted to know.
Years ago my kinda crunchy therapist told me that biofeedback would be the way of this injury. I sort of thought she was nuts, but went along with it. Well, she was right!
Dr. Kozin told me once that he thought it would be the parents who really made the breakthrough on this injury. If we work together, we might be able to do that.
claudia
Kate, just so you'll know. We were at a friends house yesterday and I told Juliana to show the mom (who is a friend of mine) her new "trick". She started to cry! How can you do that? she wanted to know.
Years ago my kinda crunchy therapist told me that biofeedback would be the way of this injury. I sort of thought she was nuts, but went along with it. Well, she was right!
Dr. Kozin told me once that he thought it would be the parents who really made the breakthrough on this injury. If we work together, we might be able to do that.
claudia
-
F-Litz
- Posts: 970
- Joined: Fri May 26, 2006 6:53 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
- Location: Ambler, PA
Re: Myotrac for use in BPI
Kate, I didn't think your response was flippant. I just know that after 9 years in various therapies with over 30 therapists, I think that maybe 2 of them might understand what you are doing here and the others won't.
I think that the adults with OBPI will play the biggest role in teaching us moms what we have to do with the kids and that it's going to be extremely individual to the child.
And even with what I've learned over the years, I'd have to really dig in to figure out where I would have to start with Maia. It's not something we just stick on and turn on and walk away from.... It will require a great deal of commitment and education. I'm excited about it and scared at the same time - will I be able to understand it? will we be able to figure out what the "right" thing to do on Maia will be? I hope so.
Maybe we need to have another gathering like what you just did with the adults to investigate some more. Maybe the manufacturer will fund you also so that you can do more work with this.
I think that the adults with OBPI will play the biggest role in teaching us moms what we have to do with the kids and that it's going to be extremely individual to the child.
And even with what I've learned over the years, I'd have to really dig in to figure out where I would have to start with Maia. It's not something we just stick on and turn on and walk away from.... It will require a great deal of commitment and education. I'm excited about it and scared at the same time - will I be able to understand it? will we be able to figure out what the "right" thing to do on Maia will be? I hope so.
Maybe we need to have another gathering like what you just did with the adults to investigate some more. Maybe the manufacturer will fund you also so that you can do more work with this.
-
Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Myotrac for use in BPI
This is what makes this experiment so exciting for us adults that have had so little information before Kate shared Joshua's Myotrac (YES!Amy, Marieke and Kate I finally have it's name right in my mind..lol)with us at Camp. Learniong by trial and error then documenting as we go along IS realy exciting and I know will be of tremendous use for our BPI children...any writing a bok as it goes along...well that's frosting on the cake!
YOU GO GIRLS!!
Next Camp 2009 will twice as exciting amd Ryan will have and own his own Segway by then too!! heh, heh...
HUGS all around,
Carolyn J
YOU GO GIRLS!!
Next Camp 2009 will twice as exciting amd Ryan will have and own his own Segway by then too!! heh, heh...
HUGS all around,
Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
Re: Myotrac for use in BPI
Fran,
I really don't think it is too tough to use on kids, especially Maia's age. I would start with her the way I started with everyone... by asking "what do you want to do but can't?" or "what muscle do you want to work on?". Most of the kids said they wanted to flex their arm like doing a biceps curl (without the elbow coming up and out), reach overhead, or reach out to the side. From there at least the beginning part is simple. Put the triode electrode over the muscle and ask her to try the movement. Chances are, she won't be able to turn on the machine (ie can't activate the muscle) when trying to perform that movement. From there the adults discovered all sorts of "tricks" to get the muscle to fire. Once the muscle starts to fire in the position she wants, she continues to try the movement but with an emphasis on making the machine light up instead of moving the arm (which engages all the different compensatory muscles).
The main problem the kids had is that they got easily frustrated right off the bat when they could not get the muscle to fire immediately. They tended not to "explore" with their arms (and brains) to "find" the muscle in the same way that the adults easily tried all sorts of things. Most of the younger set just kept trying one thing and would get more irritated (like, if this doesn't work, I'll just keep trying the same thing harder and harder until it does!!) One of the most important role of the older users is to help the kids understand that the initial "find the muscle" phase can be very frustrating, and to give them support that it is like that for everyone.
Once the muscle is "reconnected" and under voluntary control, if the focus remains on lighting up the machine, the right muscle is worked and strengthened. So many of the exercises we've been doing with Joshua strengthen his compensatory muscles as much (or more!) than they have been strengthening the ones we want. But now that we can shift his focus to "lighting up the machine" he is working those muscles specifically. The adults at camp taught me a very valuable lesson about this, though... working this focused on muscles which haven't been used much is VERY fatiguing and you don't want to do too much at a time.
I have not used the term "miracle" very often in my life, but I witnessed some this weekend. It was astounding what some were able to accomplish - actually developing enough control to flex arms under gravity that had never performed that movement before. It was incredible!!
I am working on getting pages set up on the new forum that show where to put electrodes for the different muscles and what movements to try, etc etc. I got information overload last weekend and I need to get it all down in writing!! I don't want to overwhelm the new board, though, because this is NOT about me. I make no money from this, have no connection to the manufacturer, and in fact I'm thinking about promoting the board to paid status to get rid of those annoying ads (at my own expense).
I just could not wait another 2 years to get feedback from the adults who are going to work with this device and teach me! It isn't as good as being together in person, but hopefully through words, pictures and video we can make a lot of progress in the next 2 years and really WOW them at camp 2009!
Kate
http://bpisemg.proboards102.com/index.cgi
I really don't think it is too tough to use on kids, especially Maia's age. I would start with her the way I started with everyone... by asking "what do you want to do but can't?" or "what muscle do you want to work on?". Most of the kids said they wanted to flex their arm like doing a biceps curl (without the elbow coming up and out), reach overhead, or reach out to the side. From there at least the beginning part is simple. Put the triode electrode over the muscle and ask her to try the movement. Chances are, she won't be able to turn on the machine (ie can't activate the muscle) when trying to perform that movement. From there the adults discovered all sorts of "tricks" to get the muscle to fire. Once the muscle starts to fire in the position she wants, she continues to try the movement but with an emphasis on making the machine light up instead of moving the arm (which engages all the different compensatory muscles).
The main problem the kids had is that they got easily frustrated right off the bat when they could not get the muscle to fire immediately. They tended not to "explore" with their arms (and brains) to "find" the muscle in the same way that the adults easily tried all sorts of things. Most of the younger set just kept trying one thing and would get more irritated (like, if this doesn't work, I'll just keep trying the same thing harder and harder until it does!!) One of the most important role of the older users is to help the kids understand that the initial "find the muscle" phase can be very frustrating, and to give them support that it is like that for everyone.
Once the muscle is "reconnected" and under voluntary control, if the focus remains on lighting up the machine, the right muscle is worked and strengthened. So many of the exercises we've been doing with Joshua strengthen his compensatory muscles as much (or more!) than they have been strengthening the ones we want. But now that we can shift his focus to "lighting up the machine" he is working those muscles specifically. The adults at camp taught me a very valuable lesson about this, though... working this focused on muscles which haven't been used much is VERY fatiguing and you don't want to do too much at a time.
I have not used the term "miracle" very often in my life, but I witnessed some this weekend. It was astounding what some were able to accomplish - actually developing enough control to flex arms under gravity that had never performed that movement before. It was incredible!!
I am working on getting pages set up on the new forum that show where to put electrodes for the different muscles and what movements to try, etc etc. I got information overload last weekend and I need to get it all down in writing!! I don't want to overwhelm the new board, though, because this is NOT about me. I make no money from this, have no connection to the manufacturer, and in fact I'm thinking about promoting the board to paid status to get rid of those annoying ads (at my own expense).
I just could not wait another 2 years to get feedback from the adults who are going to work with this device and teach me! It isn't as good as being together in person, but hopefully through words, pictures and video we can make a lot of progress in the next 2 years and really WOW them at camp 2009!
Kate
http://bpisemg.proboards102.com/index.cgi
-
Taneesha
Re: Myotrac for use in BPI
I was talking to my daughters therapist about it and she thinks it is a wonderful idea. I think we might get one. They have one that is used at the therapy clinic and it connects to the computer so kids who use it can see different types of things instead of lights and sounds such as if they make the muscle fire, a picture (Dora, fish, etc) will move. Is this a machine that can be hooked up to a computer? Thanks for providing this information, Kate. Our therapist hadn't thought of using it because my daughter is only 6. I told her about your son using it, and she is all for it. Thanks.