[QUOTE=Dianne G;622585]Thanks for the information: My wife is to start a clinical trial with this on the 22'nd of Feb 2010, next week. I will ask if the tubing has been changed or if the problems still exist. I would hope that the problem has been corrected. She currently has a lot of off time and we are looking forward to an improvement without the DBS. Will let you know next week how it goes.
Thanks again
Cmeender

i'm just reading this thread - got behind. Thanks for all the information from trial participants and family. I hadn't heard about it only being used if a DBS is ruled out.
Dianne, i'm so glad it was all worth it! what a nightmare.....

cmeender, wishing you all the best.

the drug companies sink to new levels all the time. They put you through the ringer and completely disregard the punishment and emotional/psychological consequences of the trauma, let alone the near death experiences.

after all that, it better work!
please keep us posted.
paula

Update:

My husband continues to do well with his duodopa trial study. He has to go in every six weeks for a check-up and to receive his meds. This new drug is great. He has regained his strength and most of his weight - and is generally doing much better than before. When he is on, he has no signs of PD. An occasional off time occurs, but rarely. The duodopa has been great!!

Hello,
We are new to Neurotalk. Dan is scheduled to start the open label Duodopa trial at Froedtert in Milwaukee next week. We wanted to touch base with you, share your experiences before and after the surgery. We are from Minnesota but will be traveling to Wisconsin (often for the first several months) or staying in town if need be. We would love to meet you both while we are there.
Dan & Arlene


[QUOTE=cmeender;623604]

[QUOTE=lute;683318]Hello,
We are new to Neurotalk. Dan is scheduled to start the open label Duodopa trial at Froedtert in Milwaukee next week. We wanted to touch base with you, share your experiences before and after the surgery. We are from Minnesota but will be traveling to Wisconsin (often for the first several months) or staying in town if need be. We would love to meet you both while we are there.
Dan & Arlene

[QUOTE=lute;683318]Hello,
We are new to Neurotalk. Dan is scheduled to start the open label Duodopa trial at Froedtert in Milwaukee next week. We wanted to touch base with you, share your experiences before and after the surgery. We are from Minnesota but will be traveling to Wisconsin (often for the first several months) or staying in town if need be. We would love to meet you both while we are there.
Dan & Arlene

Hi Dan and Arlene: I am not sure how to give you information to get in touch with us. We live in Racine which is just south of Milwaukee. We are about 35 minutes from Froedert depending on traffic. My sign in is part of my first name and part of my last name. Add ing to the end of the sign in and separate the first letter. Good luck next week; I can tell you the nurses on the fifth floor at Froedert are great, very helpful and will take very good care of you. Hi to Jennifer, Julie and Ashley.
Cal & Nancy

Dan: My wife is currently on the study at Froedert; If you wish to contact us try calling our daughter at her business Racine Community Acupuncture.
Just Google it and it will come up first page.
Our best wishes this week.
Cal Meendering

[QUOTE=lute;683318]Hello,
We are new to Neurotalk. Dan is scheduled to start the open label Duodopa trial at Froedtert in Milwaukee next week. We wanted to touch base with you, share your experiences before and after the surgery. We are from Minnesota but will be traveling to Wisconsin (often for the first several months) or staying in town if need be. We would love to meet you both while we are there.
Dan & Arlene

Hi..... My name is Russ we talked before Dan went to Milwaukee. I lost your number and couldn't call you back....**.

I will start screening for trials aat Cleveland Clinic (OH) this month

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.