I do take some of the responsibility in that I didn't describe this symptom well, I told them I would 'switch off'. I didn't have the right vocabulary to describe it. In the beginning it would happen when I went to pick up a cup of coffee or something. I would start the movement and couldn't complete it for a few seconds. It was only later that I started having problems with my legs freezing. At first I hadn't even suspected Parkinson's disease as I thought it was a disease old men got.
The other problem I've had has been down to some of symptoms that don't fit PD. I get very violent involuntary movements, where my whole upper body jolts like I've been shocked, sometime my head will turn involuntary and get held in a position for a few seconds. I'm sure this hasn't helped them. It can be so dramatic it's hard to see what else is going on.
It also looked as if my problems had started quite suddenly, whereas in hindsight I was having things go wrong for a while but was ignoring them and had found ways of covering them up. Particularly the cognitive problems I have. I used to be a deputy manager in a residential department of a school for children with severe multiple disabilities. One of my duties was to get the drugs ready. I was finding it increasingly difficult to complete this task and got around it by delegating the job whenever possible. It would take me twice as long as it took everyone else to do it. It was only when the extreme, 'I need to lie down or fall down' type fatigue struck that things got to a place where I could no longer cope. I have since read that this type of fatigue is common in people with early onset PD and if sometimes misdiagnosed as CFS.
Back in the early '90s when I was in my early 30s I had to have a gait assessment because I was having problems with my knees. At that time the pediatrist noted my lack of arm swing on my right side. I knew nothing of the possible significance of this at the time.
To be fair on the neurologists and doctors I've seen, I haven't had a typical presentation of PD, and I've not always remembered or realised the possible significance of some of the symptoms I was having long before the crisis where I could no longer function normally.
What I realise is that even now the past, and in particular what's been written in my notes over the years, might colour what my new neurologist sees this time round. This does make me a bit anxious, and being anxious during a consultation would not be a good thing.