Hi Opal,
i've had the same problems and, at last have an appointment to see the neurosurgeons next week about DBS.
I have been on Stalevo 100mg 5 times a day for a few years now and I also take Madipar dispersible 100mg 2 at 6.00am and 2 at 8.00am and 125mg. Capsules X 2 and 2 62,5 during the day. Plus Amantadine and Ropinerole 8.am. There are also other things I take every day, mostly for anxiety plus of course I can't miss the big one : Apo Go. Pump Continuously, 24 hours a day.
I know how difficult it is to cope sometimes,especially when i'm off but when I'm on,even though I still have trouble with my legs, I still try to do something so I am distracted for a while. My best distraction is art. One of my pictures is in my profile but I'm just about going to change it for my latest.
I hope you are feeling a bit better today.
With best wishes.
Casie