United Brachial Plexus Network, Inc.

Hi, everyone! It's been quite some time since I've posted. Alexis is seven now, and doing quite well. She is severely injured, but very determined, and most often refuses any help, insisting that she can do everything herself. There is not much she hasn't done that she has put her mind to. WELL... She recently decided she wants to play an instrument. Folks, she can't bend her arm past the waist, cannot lift at all at the shoulder, can't extend wrist or hand, and can only move her index finger - a little. What she CAN do is a sort of sawing motion back and forth at the waist. I'll bet you can guess what instrument we thought of! (oh yeah, I also put it in the subject, didn't I ) She has a brand new cello! Her teacher is great, allows for modifications on Lexi's part, but expects her to practice and take it seriously.

Now for my question. Lexi seems to tire very easily from holding the bow, cutting practice time way short every day. By short, I mean she wants to be done after ten minutes, sometimes less. Now if this were one of my non-BPI children, I would say, "Nice try - get back to work!" (We are one of those strict sets of parents, though very loving with our children). But I'm not sure what to do about this. I can't feel what she's feeling, but she is also a normal kid in every way, and I don't want to be duped into letting her off the hook if she's just being lazy. This could apply with any aspect of life, I suppose. We don't treat her any differently than our other children, but obviously she will have limitations that the others don't have. I always knew there may come a time that she used her injury as a way to get out of things (though I realize she may NOT be doing that this time, though I suspect it - what kid likes music practice!), but I don't know how to "play that game", if you know what I mean, not having the injury myself.

I was hoping to get a few answers from parents with older BPI children, and maybe one from one of you adults with a BPI. What did YOU try to get away with as a child that had your parents duped. In reading back over this, I may sound like a mean mommy - I really am not one - I just expect my children to carry their share of the load, and learn to work hard. Of course, they are allowed plenty of time for fun and play! Thanks for listening!

Amy Clark, mom to Lexi 7 y.o. ROBPI

Thanks for the question, I am happy she is determine and a atituded to over come what she can, This is a plus to have for her,this attitue has help me all my life BIG time throw out my life with erbs. There is also something that I think of cerative ways to help my erbs. I think I am going to tell you a way she may try something that might help?? ?

I belive she may be help by changing the bottom hieght on the support peg and angle which she holds the cello? I would try using a chair with arms on it to support your bpi . If you do try this it may help support the weight of your BPI(fact) any time you take the weight off is GREAT ! I will tell you this comes with a crazy mind of trying ways of overcoming limiation of erbs,I will tell you that not all of my creative ways work for me in my lifetime. Then they become a Because at least I Tryed . That makes for a happier life to me in the end.

Best TRYS,

Tom

I guess I needed to add this?? If she wants to support here elbow and forearm more than you could have a arm rest that can be adjustable height and angle attach rollers on the arm rest to support her shoulder and support her forearm and give her the movement she needed to move the bow. I REALLY have a wired mine about ways of overcoming limitation Funny thing is I mite find a way of helping more here with my CRAZY ways to try??? I all ways like to support my erbs with the arm rest driving a semi, Not playing a cello

Tom

Since she is severely injured, I am guessing she has not really used it as much until now using the cello. It may just be that her arm does tire fast because it is not used to being used in that way. I don't think she is trying to get away with anything this time. I know my arm tires very quickly when I am doing things with it that I don't normally do.

It may be that she needs to do other "training" with her arm to be able to get more strength/stamina. Maybe light arm weights (like a can of soup)? Does she go to PT/OT at all anymore? They may be able to give her ideas on how to get her arm used to the cello and/or figure out a support for her arm when she plays.

I played the clarinet and used to rest it on the chair at times b/c my arm got tired of holding it the whole practice (we sued to have band practice 2-3 times a week for 1.5 hrs at a time). I also used a wrist support as mine would tire and get painful.

I think it's great that she chose the cello! (I always wanted to play that or the violin).

Thanks guys - I like the idea of a moving arm rest - maybe a roller skate? LOL I'll have to try something like it. I guess I'll have to be more understanding. Maybe she'll have one on me, maybe not. I'd rather be safe than sorry!

Thanks again,
Amy Clark

Hi Amy! Maia ( 11 1/2 L obpi) also plays cello and a few other instruments. Tonight she had the String Orchestra concert adn she played for an hour straight. I want to also tell you that Maia's left arm has the bpi and she is LEFT dominant. She cannot supinate, nor can she even get to neutral position so Lefty plays with the bow and Righty is up top doing the "notes" thing. Maia's arm is very postured and her arm is at a very odd position (she has an ulnar deviation). She does not have a lot of grip strength but enough to hold a bow. She positions the cello in a different way - she does not put it between her legs like everyone else does.

When Maia first started out (age 8) she could only play for mere minutes, then she would tire and that would be it. When she first started playing drums - 5 minute was it and she tired. For a show we asked them to put her in the first set only and to space her two songs 30 minutes apart so that she had time to recoop from the first song (only 3-4 minutes long btw). Playing two songs wore her out to the point where she had to stay home from school the next day.

But as she got older and she spent more time practicing and longer hours in rehearsals and was given more songs --- she grew feet (she got more endurance) and she was able to play more, practice more, and she was just all around stronger.

Getting enough sleep helped, keeping her lungs healthy worked the best (no oxygen, no arm), planning the day of an event (with naps, types of food, hot bath, massage, ergonomic equipment, ergonomic clothing) all made it better.

She's working on her marching band "feet" now..... that's the hardest of all because she has to play her instrument AND carry the drum, AND WALK!! and this weekend, breath in cold air! I have no idea how that will work - but she's convinced that it will be ok.

It's the passion that keeps her plowing through these hard parts.

If your daughter wants to talk to maia about the cello - I'm sure Maia would be happy to!
email me at francine@litzfamily.com and we can share phone number if you want...
-francine

PS - here is a picture of her tonight....and also if you go to http://www.youtube.com/franlitz I'm posting two short video clips of her playing cello....and there's one more further down in the list from last year, too..

I had to answer by telling you my thought now. I am just like this finding crazy ways to adapt or creat to overcome my Erbs sometimes. Its me .

Heres my add on thought, The arm rest on the chair would have some type of rollers samwich with a cusion on top of them. I think a support will help the the shoulder. One of my greatest issues dealing with my erbs is that pulling weighted felling.

Ok, I wonder if you can make or buy a motories bow??

From the wild and crazy guy

Tom

I think I can explain it better,

The arm rest it self would have roller on top of the arm rest. There would be a cup shape padded wood shape that would support the weight of the shoulder and cup the forearm. There is blank spots in this idea because I can only think how I would do it . There is no cookie cutter for other with limitation.

The bow maybe motorized like the movement of a electric tooth brush?

I guess I have these crazy idea , maybe because I had to find ways to work or do things I had to be creative in my life time for sure. Hope my thought may help??

BEST TRYS

Tom

WAY TO GO MAIA!!!!!
WAY TO GO ALEXIS!!!

Carolyn J
LOBPI/71 & Proud

You are AWSOME !!!


You know as far as the mom thing goes you are Awesome to
My mom was like you guys-!! I guess I will say this way, My mom saw that I climb a tall tree , only comment she said was time for dinner. I am sure she worried I would fall climbing one handed for sure.

Best TRYS and WISHES,

Tom