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.  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, 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.  Cancer and AIDS (in relative terms)
are often fatal, with death occuring usually withing a couple years (altho'
some survive much longer as well).  Pd patients are usually around for alot
longer and I feel long enough not to be considered as having a fatal disease.
I know I for one am too busy living with this disease to worry about dying
with it.
 
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