Beth L...

First the easy part:

sac·cade (sà-käd¹, se-) noun
A rapid intermittent eye movement, as that which occurs when the eyes fix on
one point after another in the visual field.
— sac·cad¹ic adjective

Since I have this problem I'll tell ya what the opthamologist said.   Its'
tracking out of one eye, than the other, back to the original, the other,
back and forth and back and forth at near-instantaneous speeds, with the
NON-tracking eye seeing nothing in the moment it's not tracking.  In other
words, one sees out of only one eye at a time when in this visual mode.  The
mind compensates for this and those suffering from the problem don't
consciously know they have it. Things appear fairly normal visually to us.
However, its' physically and mentally a BIG strain on the brain when this is
going on.... a physically tiring strain.

What causes this condition is the PD affecting the eye muscles, non-visibly to
any one looking at ya, so that the eyes either cross or pull outward
<wall-eyed> A prism added to your glasses (presuming if you're close to
30-ish, like so many of the rest of us you're wearing bifocals or have reading
glasses) should offer you some relief.   There is information about that in
the PD achieves.

As for the rest of your message, Joy,  you might as well have been writing my
own Parkie history, except that I'm left-handed and the PD started and stayed
on my right side (thank God for small favors) for the first 20 years.  This
past year it reared it's ugly head on my left side... tho it's tolerable at
this time.

I can still hear my original neuro 6 years ago at my last visit to his office
calling me his "star patient," (I was also his youngest patient by about a
hundred years, as I was then in my late 40s) as I sat there in his office in
utter frustration because while I had no visible tremor, HE was telling me I
LOOKED great and had no visible tremor.   I"D sit there saying how awful I
felt INSIDE, that my mind had steadily but imperceptibly slipped, my visual
depth perception was shot, I was woodenly stiff (everywhere but in his
office!), had difficulty concentrating on more than one or two tasks at a
time, fell asleep siting up while talking to friends, didn't' sleep at nite,
and on and on.  I said 'Help me, please."

The neuro became ANGRY with me telling me I wasn't the "fighter" he thought
I'd been... said that it was WAY too soon to give me any drugs (too soon?  I'd
than had the disease for a dozen years!), AND if he put me on drugs, I'd no
longer be his "star patient."

I pretty much said "FU*K that 'star patient" garbage," up and left his office
and began doing some heavy-duty PD research of my own.   Decided I needed
Sinemet, went to my GP and told him what was going on within me and that it
was time I began treatment with drugs  He wrote me a script for Sinemet after
looking it up in the PDR (Physician's Desk Reference) 'cause he had no prior
knowledge of what the drug did for the PD patient, nor in all his years of
practice had he treated a Parkie.  It was a learning experience for both of
us.  Thereafter, I went to the GP once a year for a checkup and a PD "review"
I(with me telling him when I needed drug adjustments) until I discovered Dr.
Iacono who did my Pallidotomy, in Oct. or '94.

Beth... thank you for sharing what was obviously painful to write.  You have
opened wide a door into my own life-with-PD which I'd long felt WAS there, but
had been assured by the medical community it wasn't. I felt like Columbus
sailing uncharted seas... looking for a land which I intuitively knew was
there but had no proof of it's existence.  You verified it's existence and
validated what I'd been experiencing with PD.

Barb Mallut
"Lil_Honey" on the PD Chat
[log in to unmask]



----------
From:   PARKINSN: Parkinson's Disease - Information Exchange Network on behalf
of elizabeth leslie
Sent:   Thursday, January 30, 1997 3:34 AM
To:     Multiple recipients of list PARKINSN
Subject:        Neuropsychology/Diagnosis/Treatment

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?