My strategy is to keep my life as normal and active as possible. The first four years I took Azilect and Amantadine. I skipped agonists due to concerns about compulsive behaviors. The last three years I have been on a low, increasingly frequent dose of sinemet. In the last six months, mild dyskinesias and wearing off have appeared. I am preparing for DBS.

I think it is important to consider Qol when discussing strategies to delay sinemet. There have been several people in my support groups who seem in total denial how unwell and limited they appear while proclaiming themselves delaying sinemet or even “drug free”, i.e., there is severe masking, very slow movement and often profound speech problems. They are most often very quiet men with energetic, earnest wives seemingly proud to be “managing” his Parkinson’s in a unique way. When the PWPD do finally start optimal treatment, the change is usually striking. Sad waste of precious time IMHO. On the other hand, some people especially those YOPDs who don’t develop compulsive behaviors seem to do well for a while on agonists followed by low amounts of stalevo. What is your experience?