Originally Posted by paula_w

I am soooo appreciative for the trial participants comments here. Those of you directly involved can help to dispel some of the endless speculation that comes from not having enough information , and hopefully learn from each other quickly.

welcome to all trial participants,
paula

Originally Posted by Dianne G

My husband is one of two who have participated in the open label trial at Medical College of Geogia in Augusta. He underwent surgery in September, 2009. Had the reported infection at PEG site - very severe. Had to have additional surgery to remove infection and properly place the peg. Duodopa is great. Much less fluctuation and much less dykenisia.

Originally Posted by Dianne G

My husband is participating in the Duodopa trial at MCG in Augusta, GA. He had the surgery in September 09 and did have the problem with leaking at the peg site which did lead to a very serious infection and he became septic. He was in the hospital for 24 days. We almost lost him. The drug works great but he is still struggling to regain his weight and strength after the long hospital stay.

It is my understanding the pegs and tubing are different from the pegs and tubing normally used in the US. Our doctors agreed that Solvay should either change the pegs and tubes or train our US gastro doctors about the differences. It seems like a simple solution but I continue to hear of these same problems again and again. If they know there is a problem, why don't they just address it??!! It is so frustrating.

My husband has had great success with Duodopa. The continuous infusion has greatly reduced his fluctuations and dykenesias. I just pray that get this approved quickly because we can surely see the great benefit it would be to so many people suffering with PD.