Originally Posted by Ata64
I have young-onset parkinson's. I am 40 years old and I was very apprehensive about taking the risk of DBS at this point in time. I was lucky to get into the double-blind clinical trial of optimal oral therapy vs LCIG. My hunch is I was randomized to LCIG. for the first time in about a year I have not had the complete, random, unpredictable off-periods that limited my ability to do just about anything productive. We will have to see if my hunch is correct in the open label phase of the study.
I would be interested in learning about alternative pump-carrying techniques.
Also, are there any other yopa people who have tried duodopa?
Thanks for sharing your experience. I wanted to sign up for the open label study (I am 44) but procrastinated and no longer recruiting. I had to suddenly resign from my teaching position due to med side effects so I am hoping I can get this surgery, continue my career for as long as possible and start living life more freely again. Is Duodopa sponsoring continued treatment for trial participants post FDA approval?
As for wearing, it seems a pain, but I will take it. I am not sure besides waist, over shoulder or cross body how to carry pump. I sew and craft so would probably design a body holster of some sort so it would be snug to me (I could not stand the thing swinging around) maybe under where arm falls naturally at the side. Just guessing though since I have not yet worn one.
Sorry didn't see your post sooner and hope you will get this and update us on how you are faring.