I don't have proper parkinson's, but I've something else causing most of the same problems. It confuses me and the people who are treating me. Sometimes they get a bit sort of annoyed with me that I don't have proper PD. I don't quite understand what's going on for them, but they can end up discounting some of what I experience if it doesn't fit with PD or with their idea of what PD is. I saw a speech therapist yesterday and she said a couple of things that surprised me, and was hoping someone here could help -
She says that apart from on and off periods from medications, if you have parkinsons symptoms from the time that you first have them, they will all always be constantly present, they never come and go.
I have slowness and freezing of walking, thinking and speaking. It's well accepted that freezing comes and goes unpredictably and is affected by environment, so she's wrong on that bit, but I'm wondering about other parkinsons symptoms? In the early years, before medication, did any of your problems come and go? Were there times when you were slow and other times you could move fairly freely? When your tremor first started, did it come and go?
She says that no one with parkinsons ever has complete loss of voice when they start to speak. I get that. It's worst when I've not spoken for a while. I know what I want to say, make all the right movements and no noise comes out for the first few words or sentence, then it takes a while to get loud enough to be heard. Does anyone here get this brief no voice at all thing too?
She says that freezing and disfluency of speech in PD is only ever cognitive, only ever about not being able to find the words you want to say. I get that kind, but I also have physical freezing of speech where I know what I want to say but can't physically make the movements to speak. It feels like the freezing in my legs - there's the same suddeness, like the brakes slammed on, and the same physical tension and effort involved in getting started again. I'm wondering does anyone here get something like that?