Again, thank you everyone for replying to my survey. I trust you have read the experience of others and, like me, found them to be more than just clinical facts, but touching and emotional journeys that link us together on this site.
This was not a "scientific clinical survey", but it has served as a general guide in one of my little investigations. Hope the next bit is not too clinical.
Although we all know PSP can only have a definitive diagnosis at autopsy, I have assumed all respondents have PSP (and no other co-morbidity exists that involves any form of dementia, like Alzheimer's).
Changes in personality, mood, behaviour and thinking (slowness of thought), along with dysexecutive syndrome, have been noted as symptoms in most literature on PSP. It has often been given an umbrella title of subcortical dementia (this can include changes in emotion due to damage in the basal ganglia and midbrain areas). However, a scientific paper written in Australia in 2011, found that there was far more cortical atrophy in PSP, affecting more frontal lobe regions, than had previously been identified.
This meant the possibility of more personality/behavioural type changes.
In our little survey it seems that some form of personality/behavioural change was one of the first symptoms in about 56% of sufferers. While we cannot apply any meaningful statistics to these anecdotal results, it may mean that clinicians should be more aware of such symptoms. There is a tendency to highlight the motor problems first (balance, gait, posture and falls). As seen from our survey, these do occur first in many sufferers, and thus often give rise to an initial diagnosis of idiopathic Parkinson's, or other motor/muscle disease (with mostly ineffective and thus, unnecessary medications). Additionally, those clinicians that simply see personality and thinking changes first, have been known to diagnose as Alzheimers (or depression).
I hope I'm not being unfair to our medical doctors, but observations from literature about the time it takes to diagnose this class of diseases (as difficult as they may be) probably means that more clinician education is required (especially GP's who are usually our first port of call). As we live longer, these type of diseases will appear more abundantly. PSP is already under diagnosed, and there may be 4-6 times more sufferers at this current time who have a wrong diagnosis.
(We know an early diagnosis will not prevent its natural unremitting progression, but I'm sure carers and sufferers alike want the certainty of a diagnosis as early as possible).