Very good answer Sally and a lot of good information for PWPs
Stalevo is Sinemet plus and Entacapone combined (FYI I recently had none available and took the components separately and found they worked better; faster response and on time. Its the same with CR drugs "improved" for convenience only!)
The spreading out of levodopa seems to avoid the dyskinesia except when entacapone is added and 150mg levodopa (1 and 1/2 sinemet plus) seems to be the threshold beyond which dyskinesia occurs. . Thats my personal conclusion from what I have come across.
Keeping expectations in perspective is a good point; you cant get perfection but you can have a reasonable standard of living if you manage the medication.
Muscular problems; yes we are all getting older and tend to blame PD rather than age related problems.
How I manage my day:
I tend to take pills when I need them based on an arbitrary regime ie if I am scheduled a pill at 5pm and I feel I am wearing off at 4pm I take it early. If I am having a long or busy day I take an extra one. I look for reasons why I have a problem eg lack of sleep, gut problems, illness, stress non pd meds etc. I then decide on the best course of action, if there is none that works then I accept that, rest up and start again when I feel better. Forcing a situation causes stress, our worst enemy.
Also, if I find a pill is not working I take either caffeine (very strong coffee with sugar or red bull type drink ) or I eat something (chocolate works well) and rest. Generally this brings me on within 15 mins. Rule of thumb; eat on an empty stomach, caffeine on a full one. There is science behind this if you care to look it up related to gastric emptying.
I dont do any special diets or supplements (although it would do me no harm to eat better) I dont do regular exercise as such I get enough from lugging my fishing tackle between bank and car.
I dont believe in the "we are all unique" philosophy with the exception of gender and allergies we are all the same. What differs is our circumstance and lifestyle which can be changed. A lot of people give up at the first difficulty with their pills instead of looking for a way around the problem, often encouraged by over stretched neuro teams. Adding another pill is easier than solving the problem.
Levodopa works but you have to work with it too. You have to constantly be aware of what your body is telling you and adapt to its needs, you also have to educate yourself and this tends to be from the pd community. The rider always check with your doctor is often pointless as most are here because their doctor cant help them.
20 years on Sinemet without any serious side effects gives me hope for the future, thanks Sally!