I was diagnosed with PD in early 2011 but probably had it for at least 2 years before that. Since diagnosis I have been on Madopar (cobeneldopa) at increasing levels. Now I'm on 187.5 mg four or five times a day plus a 125 CR at night. I also have 24 hour I mg patches of Rotigotine as an an additional agonist. Since the start my main symptoms have been - Freezing, shuffling and poor movement from starting off, dyskenesia, burning legs and feet, excess saliva, inner tremor, tiredness, not being able to stand and chat and periods of switch of (zombie like feeling).
In the last last year and a half I have also had bouts of muscle pull or tightness that have gradually got worse. I'm informed that this is Distonia and coupled with Dyskenesia, it's causing some increased distress. This facial Distonia has steadily got worse and quite frankly it's horrible to live with. It's also starting to affect my speech a bit.
It seems to be linked with too much Madopar but the problem is if I decrease the level I get bad switch-offs, where, almost as a warning, I start to get the inner tremor symptom then - BANG, I become spaced out like a zombie with the dreaded PD stare and I have to wait for up to an hour or more for it to wear off.
As a newcomer to this forum (see introductions) and having read some of the story's told. I can only admire the stoicism and fortitude of people and feel almost guilty that I may seem to be moaning, especially when I read about relatively young people. I put up with and accept (reluctantly) most symptoms and continue to be as active physically and mentally as possible. I go for walks (up to two miles) with my wife and when I get cranked up and have forward momentum, I'm no too bad but stopping and starting are a problem. My cognitive skills are still good. I'm not allowed to drive because of PD.
What's really bugging me however is this facial distonia (muscle pull) it's so awful but does often ease off. So after all this and if I haven't bored the pants off you, what I'm asking is, has anyone in the forum any suggestions on how to reduce this problem, preferably with non medicinal remedies. Facial exercises help a bit