Hi, Jenn

I'm a bit behind in the posts but I have to second Kyle's post to you. I
appreciate the pain and stress you have been suffering with for such a long
time now. And the repeated frustrations you have endured. My thoughts are
with you all the time though I don't post often.

FWIW, I have to agree with Joanne's take on the situation. I do know
something about our Canadian healthcare system. If you were booked for a
trial of the pump to test for response for your spasticity then that is what
they would test for. The pump is not used very much yet here in Canada and to
the best of my knowledge is still considered to be experimental here. In such
circumstances, no matter how the pump may be used elsewhere, the team in
London is likely only allowed to procede under very strict protocols. This
would certainly explain the necessity for the double-blind procedure and why
they could not change the purpose of the trial (ie to treat for dystonia)
mid-stream. It is unfortunate that if that is indeed the case, that clearer
explanations were not given to you.

Your persistence and courage in the face of what must seem like overwhelming
struggles are to be commended. But I think a step back to take stock might be
helpful at this point. Chronic pain is exhausting and demoralizing. Please
take some time to do something for you. Try massage or meditation or a hot
tub. Spend some time with friends. See a good movie. Enjoy the spring (if it
ever gets here, lol :-)).

I have seen nothing but suppport for you here (and on other lists) - Joanne's
post included. Often it is mentioned here that C-Palsy is a family. I have
felt that in my time here though I am only here by proxy, so to speak. The
folks here do what families do - they love you and support you and cry with
you when you are sad or hurt or alone or afraid. But they also are here to
tell you when it is time to take stock and re-evaluate your perspective a
bit. It comes from a place of caring and respect and deserves at least
passing consideration. Please don't stop posting. You need this list right
now. The people here have been here for you and will continue to be.

I will continue to keep you in my thoughts. {{{hugs}}}

Yvonne
Anthony's Mom