The same dynamics are at work here as in any support group. We are at different levels of the illness, and this forum has evolved with some of us for almost ten years. We didn't have patient advocates with advanced pd when we were younger in the illness.

One doesn't understand advanced PD until you get there. I have a grandson at home whom I am helping to raise. Just as with any job, I have to conserve my energy for when my daughter is at work and I am responsible for him. As he goes to school, this brings not less, but more responsibility when she is at work.

However, our own community does not understand things like this. They don't understand advanced PD. No one can really imagine the physical suffering until it is upon them.

And so we deal with it in our own ways. Eventually, you get to the point where you know who and what is real, and who and what isn't. You know what is good for you to survive and what isn't.

My summation is simple. Eliminate what isn't.

Bemm, Idigogo, very good comments. Charlie, a DBS was good for you and I believe you and most of all I am glad for you.

I will always believe that GDNF was my shot for a future, based on how long I've had it. Maybe I'll get DBS and maybe I won't. But negativity must be eliminated. It's hard, but you do it to survive. You do it to stay "on". Having PD is like wearing your emotions on the outside.

Organizations are getting better at understanding this, but need funding from drug companies. They will only go so far. They should be building us nursing homes instead of hoarding their money. They should have fought harder for GDNF.

But I think great strides have been made. And that only comes from being informed.

So, in other words, you cope with it in ways that are good for you. Eliminate what isn't.

paula