Lovely posts, and I do seriously consider leaving the board as I'm too advanced to encourage. [Please do not post about my staying or leaving -I'm not looking for sympathy] - I'm wondering if the latter part of this illness should be public. I don't want to discourage people, and yet this is what it is...you can't deny it.

I do agree that there are many good people in pharma, there are many good people everywhere. I don't expect a healing from God, I do think that we have all bought into a lie that it's wrong to talk about our faith. Rather, it's people without faith who shouldn't talk about it publicly with those who do have it. People of faith are labeled perpetrators and silenced one way or another. When you get to where I am, no, take that back, anyone may at times, have a need to draw from others about faith. Ruler slap on the hand. This is not directed at the forum administration. Society has bought into this myth about talking about faith.

So that leaves an advanced patient with limited options. Toss in the paranoia and cognitive impairments that come with meds, and you've got a real problem relating.

I still danced the whole time at the BIO party tho. Music and rhythm, my best friends. I'm still hanging in, but barely. Called Shands, getting my referral, going for the DBS evaluation, but I've already lost much of my ability to speak, so am not sure i will qualify.

I think the people working on this illness, perhaps even more than the patients who dread getting to this point, need to see the whole picture realistically.

Stay active till the end. I still am, but won't pretend it's still easy.

paula

found this very inspiring:

http://www.youtube.com/watch?v=qx--O...eature=related