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Old 06-04-2011, 10:41 PM
CVGolfer CVGolfer is offline
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Join Date: Jun 2011
Posts: 2
10 yr Member
CVGolfer CVGolfer is offline
New Member
 
Join Date: Jun 2011
Posts: 2
10 yr Member
Default Wife Just Entered 003 Open Label Duodopa Trial

My wife was diagnosed 14 years ago with PD and just turned 60. For the past three months we have been participating in the 002 double blind Duodopa clinical trial with the University of Cincinnati. Just over a week ago my wife began the 003 open label phase that uses the active gel.

After reading the posts in this thread I feel like I should add my $0.02.

My wife was patient 8 of 10 at this site. Patients 9 and 10 have been fitted with tubes and are both just entering the 002 blind phase. As I understand it UC will admit no more patients, their quota is filled. But as I also understand it, other sites may still have openings to fulfill the 64 patient number nationwide.

My wife has experienced some mild discomfort at the stoma site but nothing major. As someone else mentioned, the tube that is used is a European design that does not work well and it prone to problems (the tube had to be reinserted once due to a knot during the 12 week trial, a common problem as it turns out) but the tube design must be used on all 002 patients while the trial is ongoing. The US version of the tube may be used at a later date but that has not been approved at this time.

We had always been told that my wife was a prime candidate for DBS but that option always seemed extreme and risky to us. Luckily for us, the DBS surgeon that cared for my wife happened to mention the Duodopa trial as we had told him we would NEVER resort to DBS.

All I can say is this, I have my wife back after only 10 days on the active gel. She is happy and hopeful again, smiles, her dyskinesia is almost non-existent and will be completely gone once we find the correct dosage and rate, she walks perfectly, and her cognitive abilities are returning too. It is not perfect but it is very close, a massive improvement over oral Sinemet.

This treatment works, simple as that. We are both very thankful for the gift we have been given and indebted to everyone at UC that worked so tirelessly to make this a success.
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"Thanks for this!" says:
Conductor71 (06-05-2011)