NeuroTalk Support Groups - Can anyone please update us about duodopa?

T0 the participants in the duodopa trial -- please update us as specifically as you can. That request is now global. maybe we could collect some data and compare it to what the doctors are thinking. This trial is unique because it's been in use already. There is a group exchanging information in the clinical trials subforum...putting out an all call for anyone in the trials or who takes it in Europe . Altho there will be questions for the participants, please tell us what you can.[are permitted].

you can go right to the heard of the matter and tell us if:

it works

it is better than oral meds were

was it worth the time, energy and risk?

are you getting it after the trials finished as compassionate use. I can't see changing and adjusting to something successfully, getting your life back, and then taking it away.GDNF all over again. A contributing factor was the pump/catheter that functioned so well in the UK was not FDA approved. Theyh used one from medtronics [ still referring to GDNF ]

you can sleep on it

other potential things participants could pass on if permitted:
let us know if:

pump is a nuisance or painful? infections easily avoided?

is it easy to refill for pwp with our degree of fine motor difficulty?

has it changed your life ? how so?

does it give you nausea?

will the placebo participants be allowed in phase 3?

This one should be a no brainer to figure out if you've gotten the real thing. IS that true? Don't they think a person could just skip his meds and see how bad it gets?

thanks very much in advance for any responses.