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Phil,

I have been using Vitamin E and Eldepryl [selegiline] since 1992. The famed
DATATOP study gave selegiline a passing grade [not an A+ by a long shot] as
a neuroprotectant.  According to my own evaluation and PET scans, the PD
is progressing inspite of the so-called neuroprotectants.

The evaluations done by most testing centers is based primarily upon
clinical evaluations which are far from exact. The degree of precision
assumed is then elevated to deity status by various statistical tests to
indicate the level of confidence we should ascribe to the proposition that
XYZ drug successfully protects our neurons.  I am pretty well convinced
that any drug which needs statistical tests to confirm its value isn't
worth much.

Will Johnnston
A.P.D.A. DelMarVA Chapter Pres.
4049 Oakland School Road
Salisbury MD 21804 USA 410-543-0110

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From: Phil Tompkins <[log in to unmask]>
To: [log in to unmask]
Subject: Neuroprotective Supplements
Date: Friday, March 12, 1999 1:24 AM

An important review article by Drs. C.D. Marsden of the Institute of
Neurology, London, and Dr. C.W.A. Olanow of The Mount Sinai Medical
Center, New York, appearing last September in Annals of Neurology,
Sep;44(3) Suppl 1):S189-96 makes the case that the time is ripe for
clinical trials of neuroprotective agents.  It indicates that a
large number ("a rather daunting list") of "potentially valuable
neuroprotective agents ... are now at hand", with more to come.  The
number is so large that taking them through the clinical trials
procedures now in use will require too long a time, will cost too
much, and will consequently fail to evaluate everything of potential
benefit.  A new, more efficient approach is proposed.  I would
judge, based on how clinical trials of selegline HCL and Vitamin E
have gone, that this recommendation is a very good one.  But will it
in fact be implemented, and when?

Although I have not seen the above-mentioned "list", I suspect that
some of the neuroprotective agents on it are now available to the
public as nutritional supplements.  I would guess that they include
various antioxidants, or so-called free radical scavangers.  Free
radicals (oxidizing agents) have long been suspected of playing a
role in the disease mechanism of PD, and the article indicates that
this is now pretty much confirmed by the evidence.

Given that neuroprotection may be on the shelves of one's local
health store, that mostof us really don't know much about them, and
that the researchers see a possibly prohibitive amount of work ahead
of them before there will be better information, then what's a poor
PWP to do?

Perhaps it's a time to take a thorough look at the supplement
industry. Some of us tend to dismiss supplements as "snake oil".
But there are numerous sincere and devoted researchers whose work is
used as the basis for supplements.  One is Professor Lester Packer,
Ph.D., Director of the Membrane Bioenergetics Group and Professor of
Molecular Biology at the University of California at Berkeley. He is
an expert in the field of free radicals. There is a rather technical
interview of him at http://www.solgar.com/nutrition_library/articles.
Another is Prof. William Pryor, of Lousiana State University, about
whom there is an article in the same place.

There are a few physicians who are proceeding to recommend and
adminsister supplements as neuroprotecive agents ahead of the
through trials by the clinical researchers, based apparently on case
studies and what current basic research implies.  One such person is
Dr. Jay Lombard, Chief of Neurology at a small hospital in the Bronx
and a voluntary attending physician at Albert Einstein College
Hospital, who wrote, in collaboration with a Solgar nutritionist, a
book "The Brain Wellness Plan". The book contains a chapter for
each of several major neurological diseases. A sample chapter, on
attention deficit, is available on-line for inspection at
http://www.willner.com/webref23.htm. The chapter on PD recommends
NADH, a [multi-]antioxidant formula supplement, Vitamin E, selenium,
lipoic acid, n-acetyl-cysteine, CoQ10, milk thistle and polyphenols
(e.g., pycogenol).

Are there any patients of Dr. Lombard here who can comment?  Any one
else, for that matter?

Phil Tompkins
Hoboken NJ
age 61/dx 1990