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PDUK survey, Feb 1999
"Jonathan Blakeman-Shead" <Jaybeess@btinternet.com> surveyed the PDUK list in Febuary 1999. His report and conclusions with graphs etc. is available as an Adobe Acrobat document, which you can get from Adobe.
Jonathan posted a summary of his report to the PDUK list:
PDUK SURVEY
The Questions?
-
1.
How long on average is the time between the perceived onset of Parkinson's
Disease (PD) and its diagnosis for all PD subjects?
2. Is there a difference between the perceived onset of PD and diagnostic confirmation for those subjects who have a family history of PD and those who don't?
3. Is there any difference between perceived onset and diagnosis for early onset PD (-60) and later onset PD (60+)?
4. Is there any similar environmental evidence across subjects which may contribute to the susceptibility of a person acquiring PD?
5. Are there any significant differences in the above areas between male and female PD subjects?
Summary:
The average time for all subjects between perceived onset and
diagnosis was 3 years and 10 months. (Graph IV). Rejecting M4 as an
OEerratic' (due to the extremely small population sample) from the
analysis, results in a Mean time difference of 3 years and 2 months
Subjects with known PD (all three!) in the family are diagnosed on
average within 2 years and 8 months. (Graph VII).
The sample of idiopathic (unknown cause) PWP's were generally
diagnosed within 4 years and 4 months or 3 years and 6 months if
subject M4 is discarded as an erratic. (Graph IV).
The mean difference for early onset PWP's, below 60 years of age, was
3 years 6 months or 2 years 8 months again discarding the erratic M4.
Post 60's PWP, all two of them, had a mean diagnosis time of 5 years.
It is worth noting that neither of these subjects had known histories
of PD in the family.
There was no reliable substantive data to answer the question as to
whether PD is acquired as an accident of heredity or environment. It
was noticed that some subjects reported that various stress factors
were evident at the time of onset. Two idiopathic PWP's mentioned that
they had been in regular contact with various pesticides and
herbicides prior to onset of PD symptoms.
It was impossible to determine from such a small sample population if
there were any significant differences between male and female PWP's.
Conclusions:
Most of what follows is pure speculation tainted with a slight flavour
of arithmetical truth. Nothing hard or fast has come from this little
PDUK PD survey but all the same it may be of interest, at least to the
few stout souls who stopped lurking in the shadows of the list and
ventured bravely forth with answers to the questions set. Of course
we, like OEDeep Thought', know the ultimate answer is 42, and by hook
and by crook (where does this phrase come from?) I tried hard to make
it so but my maths and my computer's brain is more of a OEShallow Muse'
variety. Most of what follows is roughly at that level, so be prepared
to feign interest!
The only "known" constants within the subject group are that they have
all have been diagnosed with PD; all have a computer and work close to
those deadly screens! Although we are assured by certain political
people that we live in a classless society we can assume with some
truth and by looking at the types of work that the PDUK subscribers
who sent details, that there is a certain level of affluence and
professionalism amongst the subscribers. There are many other unknown
and un(or im)measurable variables which affect results. not least the
variable of Perceived Onset which can only be a personal estimate.
Other examples of uncontrolled variables which may or may not affect
scores are: where subjects live, what they do, personality type,
standards of living, ethnic background, sensitivity, depression,
anxiety, past medical history, etc. etc. In a larger sample some of
the more erratic scores would be ameliorated by many "normal",
predictable or frequent scores. Hence then we might have something
nearer a part of a OENormal Distribution Curve'. As can be seen in this
little exercise, one or two erratic or unexpected scores can cause the
balance and any extrapolations or assumptions emanating from them, to
be thrown totally askew.
What is vaguely interesting is that there appears to be a slightly
negatively skewed result (range of dispersion of the data using Mean,
Median and Mode), if we disregard the one eccentric score from subject
M4, for the length of time between perceived Onset and Diagnosis. The
measure of dispersion taken from Age at Diagnosis minus Age of
Perceived Onset (Graph IV), shows a greater difference the older the
subjects get; whether this is statistically significant cannot be
confirmed with any mathematical accuracy due to the small population
sample. What this might suggest is that the older one is, the longer
the time between perceived onset and diagnosis is likely to be! Of
course there may be many reasons for this. For instance "old age"
(over 60!) and accompanying deterioration of health or facility
through age, may well be a factor which precludes both a doctor from
more readily diagnosing PD, or the "more mature" (a more appropriate
phrase!) person's own expectation as to what is an "expected health
pattern" for his or her age? On the other hand it may be that having a
GP spell out the "writing on your wall", is something that some more
mature PWP or just People would rather live without? Some more
hypochondriac members (I include myself here!) think the worst at the
slightest tremour and visit their GP's at the drop of a hat. And of
course there are more stoical and or tolerant members, who are dragged
by family members shaking and trembling into the medical arena who
perhaps are diagnosed many years after their first symptoms.
What was also evident from the majority of replies to the
questionnaire was the combination of high stress situations which some
of the subjects commented on as undergoing or suffering at the time of
their perceived symptoms onset. And how increased stress seemed to
exacerbate them. This is of course a well known problem associated
with Parkinson's Disease. The stress factor is more important than we
imagine; knowing that PD symptoms are exacerbated by it. Symptoms that
may have only been vague and almost unnoticed, suddenly become evident
and worrisome enough to necessitate a visit to a GP. Prescribed
anti-stress medications such as Diazepan or antidepressants such as
Amitriptyline or Prozac, may give some short-term relief from stress
thereby masking early PD symptoms for an indeterminate period until
the progression of the PD worsens and symptoms appear despite the
medication for stress and or anxiety. Of course there are some who get
on the downward spiral which depression, anxiety and ill-health can
lead to at times. During these periods it can be difficult to see
beyond our PD which appears worse than it probably is.
I hope that I can speak for most PWP's, that rather than see PD as a
jail cell that shrinks with time, confining and confining until the
last forced breath, but more positively to see it as a builder of
character and fortitude and a tool by which we live more, laugh more,
respect more, and enjoy more, minutes, hours, days, months and
years.......................... end
Jonathan Blakeman-Shead (jaybeess@btinternet.com)
February 1999
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