United Brachial Plexus Network, Inc.

Mare,

Right now, yes it is mostly the same people. But the posts on UBPN are all going to drift lower and lower and new people won't follow the same way. Even if you just cut-and-paste, like I said it is more of an "archive it all in one place" than anything. If you don't feel comfortable giving specific instructions or descriptions of what you are doing with Frankie, that's fine and understandable. Hopefully, though, what you write will give future therapists ideas and ways of thinking about it which will help other parents (and adults) with their own therapy. Even if the primary "take home" message from your own experience is that you really need to search out a qualified therapist who will work with you - that is valuable information, too.

The whole concept that biofeedback can be used to dramatically change motor patterns for BPI is really big! Even in clinics which have had sEMG units, I haven't heard of it being used in this way. It hasn't occurred to many therapists to even try it. That's why I created the sEMG site. Having all the testimonials in one place is a powerful thing and will provide (hopefully) a valuable reference for future parents and therapists.

http://bpisemg.proboards102.com/index.cgi

Kate

Kate
I just tryed to copy and paste it and it worked till I hit post then it said error wrong key entered I really suck at this if you want to copy it you can or I will keep trying if you help me I went to user experience and hit new thread then copied it to message and hit post thats when I got the error message

Mare,
ALWAYS hit "control-C" before posting anything! That way you have it copied if something dies. I regularily get "logged out" somewhere in the middle of typing something and I used to lose stuff all the time.

Tell me what you want to do. I can just do your thread for you and cut-and-paste everything you've posted here or help you... let me know!

Kate

It won't let me log in now and I tryed to register again and it said the name was already taken the message copied but it won't post if you want to copy it you can
Mare

Mare, you already have a username there. Email me and I'll get the password sent to you (I tried sending it to the email you used to register but I don't think you are getting those!)

Kate

Ok Kate I reregistered and got through I posted it under user experience and will continue to post under that. I truly am sorry about my other posts and will try to be more helpful sometimes I tend to get cranky with all this pain I now know what all of you go through please except my apology

Mare
Yeah Frankie... This is great...
Being in control of our own therapy helps.

I'm glad you decided to post your information on the sEmg board. I posted anything I learned using the machine. I am by no means a therapist but it is encouraging for those who think about using it, to have a place to look up information. I even shared my photo changes with many users so that they could see how much my patterns have changed. The sEmg board means having one place with all this information and could really help future parent/obpi/tbpi people with small tips and experiences. It's encouraging to read about other's progress. If no one else was sharing I would find it hard to post there and feel uncomfortable.

I wish I could find a doctor/therapist who would work with me. I have come so far but really need professional help and it's not there for me. I appreciate any information others share. No one can really give therapy on line but little tips on relaxing muscles would really help me.

I think the best way to work with either of these machines would be with a professional but that is not there for all of us.

Kath robpi/adult/myotrac user.

Mare,

I'm very cranky today, too and I am very sorry for overreacting. It is very tough to feel "all alone" in this right now! Thanks so much for posting your info there and I really hope it helps motivate others to try out biofeedback, too!

So sorry about the board giving you such a hard time!! I have no idea what happened?! I appreciate your persistence... I think I would've given up if I was in your shoes. Sorry about your hand pain... I know how that is. I had terrible carpal tunnel problems and ended up with nerve decompression in both wrists. I hope you get good results with your surgery.

Kate

Mare thanks for posting on the sEmg board! I know one family that is now using biofeedback that doesnt often come here to read but still would love to have and share information. Even though none of us are experts we are in this for each other! I am one of the lucky ones that has a therapist willing to help me, the trouble is I am 3 hours from her and dont often see her. After December my visits will be extremely limited as my insurance stinks! I am in need of any tips and info I can get and having them all in one place is a huge help when I have limited time (full time college student working several jobs).

Cant wait to hear how Frankie does! Tell him I said keep paving the path for us! Hes doing awesome!
Hugs,
Amy 20 years old ROBPI from MN

Hey Everyone
Well Frankie did the bio again today he said except for now being able to relax his bicep nothing so far has changed. He does 3 exercises the 1st is shoulder abduction trying to get the bio A channel above 15 the B channel below 10 The second is external rotation with A channel above 60 B channel below 10 The third exercise is shoulder flexion with elbow extension both channels above 15 the work/rest setting is 10/10 that is 10 seconds on 10 off each exercise is done 10 times for 1 week then the OT will be adding more reps and more exercises we have 3 maybe 4 sessions left so I need to learn everything fast. On Frankie you can't feel his muscles the OT has shown me where to place the pads by locating the moles on his body like the deltoid had 2 moles in a row the pad goes on them on his back there is a triangle of moles the pad goes in the middle of that and so on.