Quote:
Originally Posted by cmeender
Hi to all: My name is Cal and my wife has Parkinson's; she is going to start a clinical trial with duodopa very soon. We would like any information on this drug good or bad. She is very fortunate to have very caring doctors in charge of this trial but we still have concerns. She is having a lot of off time from her current medications so we are looking to level the effects of the medications. It was a choice between this and DBS.
Look forward to using this forum.
Thanks Cal
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Nancy started on duodopa February 22'nd 2010. It was a rough start but has since leveled off and is working quite well. She had the tube pull out once and it was re-inserted; hopefully this will not happen again.
She has very little dyskinesia and virtually no off time once the pump is on and running. She is much happier with this than having to take pills every two or three hours then waiting for them to kick in. I will continue to update this as time goes on. We were very fortunate as she was the first patient in the study in this facility. The result of this was a lot of attention to detail and it helps. The biggest issue I have with this procedure is the pump and the size of it. It is heavy and bulky and obviously must be carried at all times. With today's technology I do not understand why the pump has not been updated for size and ease of use.
For now things are positive and my wife said she would go through it again to gain what she has gained. We still do not know the cost once it is approved by the FDA.
Cal