United Brachial Plexus Network, Inc.

At his appt yesterday Dustin worked more on holding the contractions in the bicept while the arm was bent. We then had him try to contract it while standing. We found that he was firing the tricepts first, so had to have him work on relaxing that so he would fire the bicepts in the standing position. This started the shoulder to help compensate. Standing him against the wall forced the shoulder to stop and he was able to fire only the bicept. At first he did say "I don't know how to do that", but using the machine and some tricks (moving thumb and fingers) he found he could do it. He then repeated this and could hold it for a bit although not as long as when the arm was bent. The contraction when the arm was bent was held more often and longer than during his first session. We also had him lay on his stomach on the table with the arm over the edge and work on firing the bicept in this position. Next I think we need to use Kate's idea and move it up while he is holding the contraction to keep the brain focused through the whole movement. It seemed to be just as we suspected that in each new area (and that is every little bit) he had to work to find a connection. I can't wait to get one here, he's still deciding if we should spend the money. I can't see doing it if he won't use it. But, hoping he will agree when he sees the movements at the therapists.
Sue

FYI, Joshua is actually 3 1/2 years old. But another mom brought her 2 1/2 year old to use Joshua's machine, and had success in finding his triceps, which "everyone said" were not innervated. So definitely 6 is not too young!!

Kate

Sue,

I'm so glad that Dustin could see changes with the machine. It must be so tough for him to work so hard and not see anything... I hope this time is different and that he finds success that keeps him motivated!

Kate

Kate,
He is definately seeing where it is helping the brain connect. We haven't seen any real change in movement, yet. But, I stress the YET. I do think we will. But, I am kind of limited by what the therapist wants to try and what the both of us know, which is limited. He did read up some after Dustin's first appt but said he found very little. He was hoping to find some studies. So I told him that's what "we" are doing. He thought that was great and replied "Dustin you're making the book". You and I and the ppl on the UBPN and the BIO sites. I gave him the addresses of these sites so he could read what was here. That is partly why I am anxious to get one at home. We will have much more freedom to experiment and many more days a week to be able to use it and try different things.
Sue
p.s. is it ok if I sign up on your site for the members only section. I look at the registration page often, but I am not the one with the BPI. However we do use all the info we can get.


Message was edited by: ptrefam

Sue
If I can get in touch with my old muscles and gain new movement I pray and hope that Dustin can get much more.
I am happy with just the few changes I have had.
The major one was getting my deltoids to move my arm instead of using my upper trap. That alone changes some of the neck pain I always have. I was so lucky that once Kate worked with me for a short time at camp... my brain found it and now uses it all the time.

Kath robpi/adult/67

Kath,
I think Dustin will see more improvements. I am thinking that because he had a severe traumatic brain injury it may take a bit more. When he came out of his coma he was unable to move his body at all and had to learn everything over. This includes swallowing, holding up his head, moving, eating, walking, ect..... complete; even more than a baby as they can already swallow. He still has some slow coordination in his good hand(R) and his left ankle which makes his gait uneven. But I think with this new tool things will improve.
Sue

Sue
He has really come a long way and I hope and pray this will really move him over the top.
Kath robpi/adult

Sue,

Please sign up on the sEMG site!! If Dustin is willing to let you do updates there (as well as here) it would be wonderful for others in his position to come and see what his progression was. And we are all there to help one another and give support. This really is a new thing we are doing... we all have so much to learn from each other! And if Dustin's therapist wants to look and even post (on the public section) please tell him he's welcome. We are keeping only users (or parents of users) as members, but otherwise he is certainly welcome and any input he can contribute would be great too!

Kate

He did finally agree to use it at home. I was waiting for him to agree as I thought it would be a struggle to get him to use it if he wasn't a willing participate. Sometimes we have started trying something only to have him decided it wasn't working and give up right away. I know this sounds cheap, but I didn't want to spend nearly $400.00 just to have the machine sit in the closet and frustrate me.
Sue

Sue,
That doesn't sound cheap.... it sounds realistic. It is so hard being the one who is not injured! It was the same way with Tom and his leg for a long time. All the therapy he was doing just wasn't getting him anywhere and he was very discouraged and unmotivated.

Hopefully being able to see and hear the activity he's making will help Dustin stay motivated!

Kate