About 33 respondents)..
Remember that many symptoms are part of the Parkinsonism range and not specific to PSP. Even changes in the nervous system in old age can produce some similar symptoms.
1. While motor disturbances (balance, gait, posture, falls) are one of the first observable symptoms of PSP reported in literature, this anecdotal survey gave only 18% for this symptom.
It is well documented that only a very small percentage of sufferers experience "tremor" (as in idiopathic Parkinson's). This was borne out in this survey .
(Motor problems, also characteristic in Parkinson's, are mainly about damage in the midbrain and basal ganglia areas).
2. There were more who described some form of personality change as the first symptom (50%). This may have included depression, apathy, behavioural changes, mood, thinking, poor organisation and so on.
Studies have shown that over 80% of those who used to be diagnosed with depression were misdiagnosed and actually had "apathy". Thus, antidepressants had been given unnecessarily.
(These changes occur, mainly, because of damage to the frontal lobes. The pseudobulbar affect of excessive laughing and/or crying seems to occur later in the disease. The basal ganglia are also involved with emotional control).
3. Micrographia was an interesting observation as an early symptom (24%). This is small, cramped writing, almost exclusively a symptom of Parkinson's.
(This also is considered a frontal lobe problem)
4. Word slurring/speech problems were identified as the first (or very early) symptom in 30% of sufferers in our survey.
(Slurring often results from damage to circuits involving cranial nerves controlling the face and mouth muscles.
Difficulty word finding is often attributed to frontal lobe damage. The inability to organise and plan comes under the heading of the controversial name "dysexecutive syndrome". This is usually frontal lobe damage, but other brain areas have been suggested).
5. PSP takes its name from eye problems (vertical gaze palsy in particular). There is a very good description of symptoms on the CurePSP site that talks about an early problem of accidents while driving cars, but it says the reasons are unknown.
I have made a provisional reason for poor driving (scrapes and accidents etc) as being connected with the eyes, rather than other possible causes.
(It is likely to be connected to the "visuomotor" system that involves vision and movement. This applies to writing also).
Problems with eyes, as a very early symptom, was shown in a high 54% in our survey.
It is often suggested that vertical gaze palsy becomes a problem as a later symptom (after 2-3 years). However, those very fast eye movements (called saccades) that are necessary for "best vision of objects" may well be damaged earlier than the muscles that move the eyes up and down.
6.Incontinence as a first or very early sign only occurred in 2 sufferers (with fatigue in one).
I'm assuming fatigue as an early symptom was not mentioned in most of the posts because it occurs when there is a build up of the severity of symptoms (effort required in walking, moving, talking, swallowing, thinking, seeing and so on).
Rarer symptoms of a minority in the survey:-
a) NO (or very late) eye problems.
b)"Grasp reflex". (My wife now tends to grasp and hold onto items that I need to remove from her - and I'm not referring to money!)
Since we were only looking at the first symptoms, I have not mentioned the others that occur later such as dysphagia (Although, as I mentioned in my first post on this survey, this swallowing/choking symptom could have been the FIRST one shown by my wife).
What does all this mean?
Well, most confirms with the literature that emphasises the finer details of PSP.
How do the clinicians join the dots of these early collective symptoms to direct them towards PSP/CBD rather than Parkinson's, Alheimer's, depression etc etc?