I'm kind of curious about some stuff. You mentioned before that you used to be able to breathe off of the vent for like 45 minutes, but now it's down to less (10 minutes, maybe?) And also I know you're incomplete and that you can actually move your arm(s) (saw the video), can feel, and can move your fingers and toes.
I'm not sure if you can move your head, though, or what else you can do completely. BUT, I was wondering, why did you stop practicing breathing on your own? How often do you try to move your arms and fingers and toes? What else can you do and how much do you do it?
I would be interested to read Jenni's answer to Ryan's above post, but I would like to point out to him that if he read again the posts in which Jenni describes her movement and feeling, but I did notice that it was not complete and that she could move her arm into a position but not back again, etc.
Jenni, does your "neck breathing" have to be conscious? Most of us don't breathe consciously, after all; our body breathes without our having to do it, much as it does so much else. If you can't, it may answer Ryan's question as to why you don't do it more or all the time.
Ryan and Matt,
First, I'm going to answer the questions about breathing. What I do to breathe is actually called neck breathing. It's not like just taking a breath; my lungs and diaphragm don't work like they should. I use my neck muscles to pull air in through my trach into my lungs. The breaths are very small, so I have to take about 40 breaths a minute versus the 18 my vent gives me. In answer to Matt's question: yes, it is all conscious. In other words, voluntary.
I used to practice once every day, and after a couple of months I got up to about 15-20 minutes at a time. However, Neck breathing is extremely exhausting and straining. It takes a lot of time and energy to practice. I do neck breathe now for a few minutes each day while changing my shirt, but not to the extent that I used to. It would be great to be able to breathe on my own. Hopefully I will be able to start practicing to breathe with my physical therapist soon.
In answer to the question about moving. I work hard to get as much movement as possible back. I'm not able to just lift my arms up. It takes a lot of focus and strength. In order to bend my elbow, I have to know which muscles to tighten. Then I have to think about it as I do it. There is one main thing that prevents me from moving more: my spasticity and tone. My muscles are extremely tight. As Matt said, I am unable to straighten my arms once I have bent them. If someone straightens my arm for me, I can bend it again, but only a few times in a row before I get too tired. I am able to move my fingers, toes and wrists easier and without as much thought as my arms and legs. I'm constantly trying to move things everyday, whether they move or not.
I know this all may sound very confusing. Spinal cord injuries often are. If you have anymore questions feel free to ask them.