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PARKINSN  July 1995, Week 5

PARKINSN July 1995, Week 5

Subject:

Re: 30 year old Parkinson's Patient

From:

Wendy Tebay <[log in to unmask]>

Reply-To:

Parkinson's Disease - Information Exchange Network <[log in to unmask]>

Date:

Sat, 29 Jul 1995 05:24:41 -0400

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (116 lines)

Dr. Don Berns:
 
Just finally got to read your posting regarding that young woman who is to
have a pallidotomy.  First of all, thank you very much for your interest in
and your consideration of my opinions!  Anyway, here's some of the thoughts
that first came to mind when I read your posting:
 
 I assume since she has had pd since age 16 or so, her symptoms must have
been getting more debilitating, thus the need for the procedure.  With her
permission, I'd personally be interested to know how quickly her symptoms
first developed after/during this period of following the moquito truck on
bicycle, as well as how quickly and in what manner they progressed afterward.
 (Was it a gradual onset like most of us experience, or was it more quickly,
say in a matter of days, weeks, months?)  And are/were her symptoms primarily
shaking, rigidity, or whatever?
 
Is she or her family aware of what the actual pesticide was that she was
inhaling/ingesting (actually, that brings up the question of what is the most
prevalent method of exposure, e.g., inhalation, ingestion, absorption through
the skin, etc.)?  Is it possible to contact the company which did the
spraying, and try to assess what amount (flow rate) of pesticide and at what
concentrations, the truck  would have been expelling, and developing some
estimate of total exposure based on these values and approximate number of
exposures and their length of duration?  I'm curious, because as seen in much
of the pesticide info I've posted so far, the symptoms and reactions listed
seemed to be based on more short term, high level exposures (which is
probably similar to her situation), rather than to levels (longer term, low
level) to which the majority of the population on average is exposed to.
 There is definitely a correlation to these more concentrated, toxic
exposures and neurological symptoms, but the correlation with more minute,
diffused exposures and neurological symptoms is less well established.
 
I also find interesting the comment that she loved the smell of the pesticide
spray, considering many with pd eventually suffer from loss of smell and/or
olfactory hallucinations.  I know there's a kind of distinct, itchy/scratchy,
smell that I've experienced for quite a while, which I've always associated
with being bothered by allergies or sinusitis (both of which I suffer from),
and is a sign to me that I need to slow down and rest some or risk really
getting sick.  Also, I've suffered from a somewhat deficient sense of smell,
that until I got pd, I had always associated with my sinus problems as well.
 But more recently, in addition to all that, I occassionally get the
sensation of smelling something  rather strong, and the only thing I can
relate it to is dryer sheets, even tho' there may be absolutely none in the
vicinity.  Occassionally when this occurs, I  also am more aware of my pd and
sometime experience what I can only call a "strange' feeling.  In the story I
related previously of Dr. Callender's patient, also a high school student
when stricken with on/off pd-like symptoms due to exposure to some injection
insulation material being applied to her school's roof, supposedly her
symptoms were/are triggered by smells as seemingly innocuous as perfume.  I
sometimes wonder about the pd/toxin/smell link.  Perhaps some of us with pd
were exposed to substances with distinct smells (or even taste possibly), and
if these substances have by chance contributed to the development of our
symptoms, then could it be possible that later exposures to similar smells
could trigger symptoms (as in this second example) or conversely, that a
period of temporarily worsened symptoms could trigger in the brain a memory
of the original smell(s) which may have first led to this point?  For
example, men who have served in wartime, often come back suffering mental
trauma that can trigger, under the right conditions, not only horrible
memories and visions (hallucinations?), but also real physical symptoms
(rapid heartbeat/breathing, sweating, etc.) as if they were there again
reliving the episode.  I wonder if a similar phenomena might not be at work
regarding pd and smell.
 
As a final comment on the smell of pesticides, I must say I can't possibly
understand how that could be appealling?!  I supposed that if we could find
out what specifically was being used in this case, perhaps there might also
be info on what this smell could be likened to (maybe since  mosquitos (and
bees, and...) seem to be attracted to sweet smells like perfume, maybe this
pesticide had that sort of smell?)
 
I watched a show on public TV a while back, and it had something to do with
the environment and how, especially back in the 50"s etc., man thought he
could do one up on nature, and control everything just a bit better than she
could on her own.  They showed this Alabama town (same state this girl is
from, hence why  I mentioned this show), and I mean every inch of it, being
sprayed with DDT to protect the population from disease-carrying pests (ha!
 which is the lesser evil - personally I'll take my chances with nature).
 They sprayed EVERY car, doorway, trash can, and even the entire bodies of
LIVE cows coming out of a paddock.  It was absolutely amazing.  I don't know
if DDT was still being used in the 60's (it is now banned), when this young
woman (and myself also, since I'm now 31) were growing up, but it is very
toxic and is the main reason our national symbol, the bald eagle came very
close to extinction (and also other species were decimated as well).
 
Anyway, that's enough thinking for now.  If I have any other ideas, I'll
definitely relay them.  I'd also be interested to hear of any other ideas
that list members here might have.  It does frighten me that there seem to be
an increasing number of ever younger pd victims (or survivors, depending on
one's point of view).  This is exactly why I keep beating the same points to
death - that if environmental factors are playing a significant role, and if
they are primarily derived from human, rather than natural, sources, then we
must take a serious look at our assumptions regarding disease and its
treatment, and at the consequences of our culture's lifestyle.  Along with
developing the means to help those like this young woman, who have already
suffered for many years and who would like to regain their independence and
ability to contribute, etc., we must also focus on finding and eliminating
the source(s) of the problem, or at the very least, find ways to protect
ourselves and build up our resistance to those things which we cannot alter.
 As in the case of all the genetic testing, etc., now being developed, I
believe one obvious benefit would be that those who are identified with
susceptibilities to certain diseases, could then be forewarned and hopefully
avoid those substances and/or situations which could trigger the disease.
 Where avoidance isn't possible, knowledge of the root cause(s) can aid in
choosing the best treatment(s).
 
Oh, one last, last comment,  If they know or find out what the pesticide was
that this moquito truck expelled, could it be possible to supplement her
pallidotomy with some of the specific antidotes/remedies recommended for
specific pesticide poisonings (e.g., chelation may be used in the case of
organomercuric pesticides)?  Just a thought.
 
Again, thanks for posting this story and for your interest in my opinions and
thoughts.  Please also pass along wishes for a successful operation to this
young woman, and let us know how things go.
 
Wendy Tebay

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December 2000, Week 5
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December 1999, Week 5
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December 1997, Week 5
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