Hi Kyle,

Sorry to hear you're having a rough time. Hope your pain doc came through.
Have you tried Neurontin? I find it helpful. Just a thought.

Yes, yes, yes, to a website! This is so needed. Let me know if I can help -
I have some HTML skills. I'm thinking about writing an article for New
Mobility on cp and aging, and helping with the website would be a good way
to do research.

Take care,
Pam


> Hey all...
>
> I haven't been on the list today as it's been a particularly bad day
> pain/spasticity wise.  Things have been getting progressively worse for
> about a week.  I left work about two hours early yesterday, slept about
two
> hours last night and could not grasp a razor or toothbrush.  Needless to
> say, I did not work today.
>
> Called the pain doc's office at 9:00 and said that I urgently needed to
see
> the physician.  I was told that the earliest possible time was July 26th.
> Fine, but could someone "call something in for me?"  That was 9:00, I
called
> back at 2:00 and re-emphasized the urgency and was told that someone would
> get back with me eventually (today??  this year??).  The prospect of a
> weekend with no pain-relief isn't something I'm relishing.
>
> The thing that really sucks is that I signed a "contract" at the beginning
> of my "treatment" (Jan. 2001), agreeing that I would not seek pain
> medication from any other physician.  In return, I would be provided with
> timely treatment and urgent situations would be responded to in kind.
>
> To keep my mind off of my own pain, I renewed my "web searching" for
> information re: CP and Aging, or some reference to "Post CP Syndrome".
Not
> much has changed in the six years I've been with this forum.  Still not a
> recognized phenomemon--unless, of course, you're the one getting older
with
> CP.
>
> So, with strengthened resolve, I would like to create a "point source", a
> web clearinghouse, if you will, of data relevant to the subject.  The web
> sites that are extant seem to have fizzled.  Would any of you be
interested
> in pursuing something like this?  I would envision something of a
repository
> of info for patients and healthcare professionals alike.  It could even be
> of statistical relevance.
>
> Off the cuff, whaddya think?
>
> -Kyle
>