I've seen a few references in discussions recently to terms like "inexorable
decline", and "fatal disease", in regards to pd, to which I'd like to
respond by reposting something I posted previously relating to the same
subject. The conference mentioned is now past, but I believe all other
points to be relevant, and besides, I didn't feel like typing them again!....
*************
From: Tebay, Wendy
Date: Wed, May 17, 1995 6:11 PM
Subject: Alzheimer's lecture in Maryland
To: parkinson list
For anyone who is in the Washington DC area and would like to attend
the following lecture, I'm enclosing relevant info (at the end of this
message). This lecture is on the subject of Alzheimer's, however,
there is a similarity between the two diseases, especially in the
areas of possible causes and treatments, although the two disease
attack different parts of the brain, the underlying mechanisms are
similar enough to warrant a closer look. The subject of this lecture
is more than just the usual regarding AD, but talks about its
prevention and even reversal. (I have an summary of some longevity
conference in which he had made a presentation regarding reversal of
AD dementia in a NJ artist). I personally am planning to drive down
from NJ for the lecture for my personal enlightenment, and a friend
who's father has Alzheimer's is also going to attend. I will attempt
to inform the list after I return if I learned anything of special
applicability to PD. The lecture is being sponsored by the Well Mind
Association of Greater Washington, Inc. If anyone would like to
contact them, you can do so at 301-949-8282. They have a newsletter,
pamphlets, etc. on mind-body medicine type of subjects, and also give
referrals to alternative health care doctors, etc. If I'm correct,
the woman I spoke to there the first time I called, was the one who
related to me the story of the man who managed to keep off of the
standard pd drugs for the first 15 years after diagnosis by using
alternative means. (i.e., he bought himself an extra 15 years DRUG FREE).
This was one of those friend of a friend sort of relatioinships and
anecdotal stories, but nevertheless, ANY positive story is worth recounting
due to the excess of negative ones. There was a recent article in the
health section of the Washington Post on neurological diseases, in
which the neurologist from Tufts University in MA (I think that's correct),
grouped AD, PD, and ALS together (which is not necessarily incorrect to do
so, however...) as diseases that were unquestionably UNIFORMLY FATAL (or
something to that effect and equally drastic)! Well, I can't say in this
format what I really think of that comment, I will leave it to the
imagination, but it isn't pretty. Comments
like that infuriate me, (besides the fact it is incorrect) NO ONE is going to
tell me what my future holds. To that comment I'd like to say, (and I think
I will in a
letter to the editor of the Post) that LIFE itself is fatal by definition,
and comments like those serve no purpose but to suck the life out of people.
I recognize that in general these diseases are often fatal, but I do not
believe that someone who survives, and very well thank you, with pd for 40+
years (as has a woman I met at the PD
forum in DC last Sun.) is suffering from a fatal disease.
In a related vein... My acupuncturist has found an article, taken
from a chinese medical journal, about chinese medicine and pd. It
covers causes, diagnosis, and treatment, mostly in chinese medical
terms (like chi, yin, liver wind, etc), and it does state that it
cannot "cure" pd, but that especially when started early and depending
on the type of pd (as defined in this system there are 3 types), it
can be effectively used at a minimum to control symptoms somewhat and
reduce the need for drugs (the disease will in this case continue to
progress, but the drugs required would be less, therefore prolonging
possibly the other side effects of high dosages of sinemet that occur
later). And at best, it can supposedly halt the progression of the
disease where it stands. This therapy incorporates acupuncture
(including a sub-specialty called scalp acupuncture), herbal remedies,
and diet. Why is this type of information never picked up by the
media, or by the national pd groups? Sure, it may still need further
research and proof (especially to convince westerners), but most of
the existing western theories and possible new therapies are also in
the same stage of research and proving. Acupuncture at least has been
around for thousands of years. I have no idea how long the specific
treatments for pd have existed, depends on how long pd has been around
and its prevalence in China. Even the exact mechanisms and efficacy
of therapies like Eldepryl, believed also to slow the progression,
are still being debated, and some believe still unproven (I, however,
am taking Eldepryl to halt the progression, I hope). Someone else
also posted recently about another person who has managed to halt his
disease's progression by following a diet contained in a book (Diet
for a small planet?). This is good news that needs to be shared (do I
sound like a preacher yet?)
In one of the national pd group bulletins a while back, someone wrote
in asking about Ayurvedic and PD. The doctor and patient neither one
knew how to spell it, but the doctor discounted it and dietary
therapies as not being cures. So what? He doesn't have a cure either.
Why is it then that NIH's Office of Alternative Medicine (OAM) is
sponsoring research into Ayurvedic and PD, and I heard possibly
homeopathy and pd? These programs are never mentioned when the topic
of PD research is discussed in formal circles. Is it that these
alternatives are not taken seriously, or that those who report on
these health issues do not want to seem "flaky"? There have been alot
of "flaky" conventional treatments (such as sucking blood from already
weakened patients with leeches) throughout history as well. I am sure
some of these other alternative topics are being looked into, but
they are never mentioned in public discussions, journals, or whatever.
As far as a "cure" goes, I can live with what I've got, and if I can
keep it at this stage, I personally consider myself "cured". I
realize some pd patients are more advanced, and research into
pallidotomies, fetal transplants, etc. is very important to them, as
it would be to me too should I ever get to that point. I am not
belittling the existing research, I just am tired of reading nothing
else in the media or elsewhere that is positive or that deals with not
only treating the disease once it's advanced, but even more so, making
sure none of us ever have to get to that point in the first place.
There are people as well who ARE living functional, productive lives,
for many years (perhaps longer than those around them). This number
may only now be a very small percentage, but it doesn't need to be so.
The loss of productivity by those in the larger percentage group who
want to work and contribute, and who can't, is a major concern and
cost to the public. To change this percentage ratio the first step
is to change focus, or more exactly, to expand the focus, so as not to
exclude any one area. Prevention of pd altogether and delaying its
progression should receive as much attention as dealing with the more
advanced problems. This is starting to happen, but slowly. The
doctor who made the comment in the Post article mentioned did talk
about hope and how people are finally becoming more hopeful with the
discovery of newer therapies like the growth factor. But his previous
comments regarding an ultimately fatal prognosis (as things now stand)
ruined it, at least for me. Obviously, if one were to look at the
chinese method of dealing with pd, they don't consider it
automatically fatal, or beyond our current level of control. One
major factor in controlling it is attitude and I don't think any of us
should accept less than a positive conclusion to our stories. Even
death itself is not a failure, and there are alot of supposedly
"disabled" people who have contributed more to society (see PBS 3-part
series recently aired on "people in Motion") than many "abled" people
(no offense to them either - the definitions of disabled and abled
anyway are not set in stone). So, now that I've finished "preaching"
or whatever it may be called, I want to make it clear that I'm doing
it not to offend anyone, that all views and needs are equally
important, but I really feel the need to stir things up a bit. So
much for being a passive pd "victim". Like the motto of the PD forum
in DC this week, "Silent No More", I figure it's about time to stir
the pot a little and change some pre(mis)conceptions. Actually for me
it may be good to be continually bombarded with people telling me how
this story is going to (negatively) end, because I have yet to do what
I am told (ask my parents). When I am asked, however, it's a
different story, but so far I don't see anyone asking me how I think
I'll end up, just telling me. Oh well, their surprise!
Anyway, finally, here's the promised info from the flyer I received:
VERY SPECIAL ANNOUNCEMENT!
THE WELL MIND ASSOCIATION OF GREATER WASHINGTON, INC.
FREE PUBLIC LECTURE
"RECENT DISCOVERIES IN THE PREVENTION AND REVERSAL OF ALZHEIMER'S
DISEASE" by DHARMA SINGH KHALSA, MD (President and Medical Director
of the Alzheimer's Prevention Foundation, Tucson, AZ - and who I
believe has an AD home page on the WWW)
SUNDAY, MAY 21 AT 2:30 PM
HARRY PUTT AUDITORIUM, NORTHWOOD PUBLIC SCHOOL, 919 Unversity Blvd.,
Wheaton, MD.
Directions: From Beltway, follow Connecticut and then University; 1.6
miles after crossing Georgia Ave., stay to left immediately after
light at Arcola Ave., and cross into school entrance. Turn left and
auditorium is on right in building with stainless steel figures on
exterior wall. (I would perhaps suggest calling the Association for
further details).
*********
Hope to see some of ya'll there maybe. Hope I didn't offend anyone by
my views, but after all, they are only my views, mixed in with a
healthy dose of devil's advocate!
Wendy Tebay
****************
End of repost - And in conclusion I say if anyone has the urge to remind you
that you'v'e got a fatal disease, tell them to get lost (or worse if you'd
like!). I don't know about anyone else, but I am taking advantage of this
disease to really live - I'll die when I"M READY. And when I decide I'm
ready, it won't be a failure of any sort, because I LIVED!!!
WT
