Hi Ron!

Yes, I'm very willing to be part of your "bounce off" team! 
I never _worked_ with SCI patients - but I sort of live with 
one (boyfriend is a complete C5/C6 quad) - and I know how 
hard it is to find knowledgeable health care people - you 
have to become an expert on your own body - I guess I can 
say we are:-)

Questions:
 - The TLSO is a brace, yes? Is she wearing it because her 
injury site isn't stable? (I believe it's a bit unusual so 
long after injury, but not sure..)
 - What is "LOB with UE movement"?
 - "She has a donated power w/c (reclining captain's back)". 
No manual chair??
 - "..several months of rehab" - sounds like a lot these 
days for a low injury. Were there complications?

I do have a lot of online resources to recommend to you. And 
I have the e-booklets on "expected outcomes" for different 
levels of SCI. Would like to send you the two relevant 
ones - for T1-9, and T10. They are big - can I just attach 
them to a private email to you?

About transfers, you can find several private transfer 
videos on the Care Cure forums, here:
http://sci.rutgers.edu/forum/showthread.php?t=50721
Besides that the Care Cure forums are also The Place to get 
all kinds of questions answered - by both survivors and 
professional people.

The sacral nerve stimulator trial sounds exiting - bowels 
and bladder are two biggies. Just to imagine to get them out 
of the way--- wouw!

But I didn't get this one:
"She has no bowel/bladder control so toilet transfers are 
not an issue."

Whether she uses suppository and dig stim, or sacral nerve 
stim for bowels - sitting would still be the best way to go. 
(I can attest to the side lying position being way slower!) 
Or, are you saying she has no routine/program - it just 
happens...??

BTW - cathing can be done in the chair - but if using the 
sacral nerve stimulator - wouldn't one prefer to be on a 
toilet, or commode?

Besides that I second what Joan said - what does she want 
and need to do? What has been addressed in rehab? The job 
now is to implement and build on (the relevant parts of) it. 
I guess there's a discharge letter - maybe sit down together 
and work your way through it. Now that she's home it may 
look very different to her, and what comes up might be very 
relevant input for the COPM, for starters..

Wishing you both good luck!!

susanne, denmark




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