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Not necessarily in that order.  And yes, I do have a lot to say.  And I'm
hoping for some feedback.

It was timely to find in my letterbox when I arrived home from
here yesterday a package of journal articles from the psychologist who
did my neuropsych assessment in NOvember.  So, still pickin' off that
damned KLingon (actually on taste I think I prefer Marling's fab fudge,
even if it's fattening - but the Klingon, let me assure you, cures a
surprise attack of Parkie-style Acute-ADD faster than you can say Ritalin!)
... anyway, I sat down with a pile of papers on cognitive impairment in
PD.  Just as well I'd skipped lunch and my midday Eldepryl becuse I
needed something to keep me awake long enough to get into this stuff I've
been waiting for (I cannot get used to living by the clock and
medications, however minimal yet).

Most interesting to me at this point is the discussion on
the difference between people presenting initially with symptoms of
bradykinesia and rigidity (I'm one) and those whose primary symptom is
tremor (I had/have that too but never when I'm in the neuro's room).
>From postings to this list I have noticed that many people presenting with
tremor seem to go pretty quickly onto l-dopa.  But I can't say I've seen
any comparable evidence for those of us with what one PWP calls
'invisible PD' (thanks FRances). It's bad enough that PD is invisible,
but to have invisible invisible PD is worse again ... in some ways.  So it
has begun to seem to me that I - and I don't want to sound paranoid about
this - may be a victim of the invisibility of my symptoms as well as the
invisibility of the disease itself.

Given that most neuros are men who (I think it IS safe to generalise)
don't see therefore don't u/s just how frustrating it is to try to hang
a doona cover in a strong wind, or put on a pillowcase, or face the
myriad frustrations of preparing food etc when one hand, which looks
perfectly normal, just won't function, not to mention just how long it
takes to accomplish these small tasks, I don't yet see how to get across
the full nature and extent of my inabilities when they don't actually go
with me to the neuro. Sure I do all the little tests, but they, like
neuropsych assessments (IQ tests) say very little about how I function in
the world.  Whereas a tremor makes itself known by embarrassing both
its victim and observers.  But I'll move on.

What interests me in connection with the neuropsych literature
is the link between bradykinesia and bradyphrenia (a term I'd not heard
before).  I'm going to assume that many people on the list know much more
than I do about this, but perhaps usesful just to give the brief
definition from Levin et al.(1992)  "The term bradyphrenia refers to
the slowing of thought and is presumed to be the cognitive analog of
bradykinesia' and 'This area is especially difficult to address because
tasks that measure speed of processing are frequently confounded with
motor demands.  Although slowed information processing may exist in
patients with PD, it is certainly not well documented.'

They briefly discuss whether both slowing of information processing and
bradykinesia both reflect similar dopaminergic dysfunction, but nothing
conclusive because there were then no studies on the relationship between
these features.

More interesting still to me, picking my way through this maze, is the
finding that 'When tremor is the predominant clinical sign, mental status
is usually normal or near normal.  Tremor bears no relationship to
attention, visual scanning [get that one wrong and it's Klingon all
over!], psychomotor speed, visual memory, visuo-spatial processing, or
language skills.'

'By contrast, bradykinesia and rigidity are routinely associated with
intellectual decline, including impaired verbal fluency, word list
learning, verbal and visual memory, constructional praxis, information
processing speed, and complex attention.'

So, in short, it seems that invisible symptoms come at quite a price.
They are accompanied by the likelihood of much greater impairment, yet
attract less attention ito treatment than the more visible symptom of
tremor. (One neuro has told me that he will not give me l-dopa until I
cannot wash/dress myself, make myself a meal, or get out of bed in the
morning.)  Yet tremor, it seems, because it IS seen, is seen to be more
'worthy' of early treatment. (I know this is simplistic, but I'm trying to
u/s it all.)

Unfortunately I hadn't thought this through in time for my appt with
3rd neuro on Tues. last when I sought another opinion on treatment.  He did
say, too, he'd not give l-dopa yet, preferring to give me a dopamine
agonist first. But he did add that it is my decision as much as any
neurologist's as to when I commence on l-dopa.  That's an advance on the
previous attitude.

I had a noticeable tremor as far back as '84, and in '94 when I began to
lose dexterity in my left hand the tremor was bad enough for me to give
up using a fork in that hnd because I could no longer guarantee getting
the food safely to my mouth.  When I changed my diet drastically after
diagnosis last September the tremor virtually disappeared.  (The
naturopath who advised me on diet successfully treats his grandmother for
tremor dx as PD, but he now doubts the dx). I experience it now in my
left arm at rest and at all sorts of odd times in my left leg.  But never
in the neuro's rooms!

Along with the problems with my left hand since 3 yrs ago, I have all along
been fretting about loss of memory and concentration.  And even though the
neuropsych testing was apparently unremarkable to the neuro, there was
quite a discrepancy between verbal and performance levels (performance
lower because slower).  There are some references to further research on
'improved function on neuropsych tasks with dopaminomimetic [??]
treatment [but they] tend to be small and highly selective', according to
Mohr et al. (1990).

What I want/need to know is if there is anyone here can relate to any of
this ito their own experience.  In spite - or perhaps because - of being
a late starter (I began my u'grad studies at age 42 under quite difficult
personal circumstances) I WAS a good student before this all took over.
I didn't make stupid mistakes.  I was careful, conscientious with a
reputation for good hard work. I loved my research, and set myself
'ambitious' goals.  Now I find myself saying 'I can't' or  'it's too
hard' or 'I just can't be bothered', and I don't recognise myself in
that. I find it difficult - painful - to sit for long periods at the
computer, but the task before me demandds I spend virtually my whole life
here, and i find it hard toface that prospect.

Yes Ron, David Hawking is inspiring.  So what is it that makes the
necessary difference between courage and defeat?  I want to think that if it is
dopamine I lack and I know how to get it, it iwlll go part of the way
in making that difference.  But I guess no guarantees.

Well, I"ve gone on.  But several of you have been good enough to ask me
to let you know how the appt. went last Tues.  I'd say it went very well
on the whole.  I am to be assessed by that same neuro and a colleague who
'knows more about PD than anyone else' in these parts, and hopefully I
will be directed to a physio with an interest in PD - my left back
and shoulder muscles are wasting and ? knotting through lack of mobility on
that side and my right hip is often painful ? through compensating for a
lazy left leg.  At that next assessment I hope to be able to talk through
the different approaches to tremor and bradykinesis/rigidity.  I would
greatly value your responses ... if anyone has reead this far.

Thanks

Beth.

PS  Can anyone tell me whwat saccadic eye movements are?