I am struggling to get a reference for what is "normal" in terms of disease progression in early stage PD. Obviously, its the "snowflake" disease, and everyone experiences their own unique version. But there are some "norms"
Royprop regularly refers to the 5 year "honeymoon period", and others refer to themselves as being in it. My first neurologist in Carcassonne said sort of the same (but with typical blunt french bedside manner). "Don't worry - you wont be in a wheelchair (yet). The first 2 stages last about 8 years and are well managed with medication. After that... (gallic shrug)".
Another problem is "after diagnosis". I am about 15 months post diagnosis (15 March 2018, confirmed by Datscan late May 2018). My father in law, strictly, is about 11 months post diagnosis, but he had been visibly trembling in his left arm for at least 2 years before that, and by "diagnosis" had nearly the same tremor in his right arm. He had a classic "pill rolling tremor" during that period, when we as family were telling him he had PD, but he refused to see a doctor.
So time from diagnosis is not the same as time from disease onset. I think I was diagnosed early. In July 2018 I took my Datscan to my UK GP because I wanted to start the process for getting an off-label prescription of Bydureol, something which I think I could work through the system in the UK, but is effectively impossible in France. My UK GP agreed to refer me to a neurologist, but told me after his clinical exam he didn't think I had PD. (Nice guy, but he didn't know what a DATscan was...). Having started on the SPARK trial, I didn't bother pursuing it when my UK neurologist appointment was cancelled.
I note several newbies on here like me, but most (all?) appear to have started some dopaminergic medication (MP counts as meds in that context). Obviously many are also on B1 which further confuses what is "normal progress"
I am interested to know, what is other PWP's experience of the early stages? How much progress is normal and after what time?
TBH my condition has progressed much less than I feared this time last year (and indeed, almost certainly, improved compared with this time last year - which was close to my low point). Especially as it appeared to be racing ahead (I am a talented hypochondriac). Whilst I would be curious to see what a PD med does for my symptoms, I don't remotely need anything at the moment (and the SPARK trial currently prohibits it). Can somebody offer a benchmark for how to measure progression in the early stages?