Your words have really moved me this morning!

Paula said:
so what am i supposed to take away from this? more of what makes people tick; i came in raging so it was only natural that they did talk about me. Their attitude was to ask me what i wanted and then not respond with a comfirming "ok" but just attitude. i called my brother in seattle and said i felt trapped in a situation where no one cared about me and i wouldn't be able to get enough meds. i panicked because what i feared was indeed true.

Laura said:
We can shake our heads at the willful ignorance, but what really strikes me is the lack of compassion in these people. .. . . Has anyone even asked you how it feels to have PD? Why do you need meds so close together? This is a gold standard treatment after 50 some years of research? DBS is not a treatment innovation but rather a way to try and undo the physical dependence/addiction we have to Sinemet et al. If it were truly innovative Sinemet would not even be a factor.

In nearly every hospitalization of PWP, the major problem I see consistently is the lack of compassion - this is true even with those responsible for direct patient care. You cannot explain it away by saying it is the "ignorance" of such employees - it takes "compassion" to want to learn.

We all know what needs to be done; we're just not sure where to begin.
My first priority would be to "teach" the person living with PD - then they would know what to expect rightly their's. The next would be to teach the direct patient care personnel - yes, even some doctors would be in this class!

Now, if bandnido is reading this, I just saw his lightbulb above his head turn on! There's a special "book" nearly complete to help start this mission!

Peggy