Hello everybody,
I have to state I am not AN patient but I have much in common with those of You who are afflicted with synkinesis. This is very annoying and stressing consequence of facial paralysis, too, as in my case. I am struggling with it more than two years and many times I feel very lonely because I do not know anybody in person who has the same problem. I live in Slovakia, central Europe, there are no specialists for facial neuromuscular retraining. My only source for information is internet. I get botox for synk but its effect lasts very shortly, usually 3-4 weeks, then the synkinesis returns. I know there are people with much more serious affliction and I am grateful that I can see, eat, drink and also speak without much effort which was not the case during my illness. But anyway, face is the window of the soul and everybody is much more sensitive in issues of the face. How are you coping with synkinesis? Does it affect You for example in speech? When I am speaking my lower eyelid twitches and the upper eyelid has the tendency to close. That distracts my attention and I cannot concentrate on what I want to say. So I feel sometimes depressed. I hope I will be sometimes able not to notice these unwanted movements of my face. I realized this is a condition in which I should live for a long time, if not for ever. But I am following very closely all the progress in neurology field especially in peripheral nerve regeneration and I still hope that in this era of groundbreaking innovations, nanotechnology, genetics, molecular engineering etc science will find some cure for this underestimated because relatively rare condition. Maybe we should be more organized and articulate more loudly our problem like the patients with MS for example. I am very glad to find this forum, anyway. My name is Elinor, I am 57 years old, a senior lecturer at a college. I am grateful for any reaction. My best regards
