Hey, I have an idea for an informal study, which hopefully I can coordinate,
at least in the beginning, and later pass off to one of the national pd
organizations or to some individual researcher.  As the question was
recently brought up concerning whether anyone knew of any actual pd
healings, I would like to propose the following.  I would request that if
anyone knows of, or has heard of, actual pd healings, miraculous or
otherwise, that they please forward me a detailed description of the
healing.  The description should include:

1) patient info - sex, age (at diagnosis and at healing), general state of
health, pd meds, etc.
2)  healing method & where occurred & date
3)  witnesses and other evidence (video, Doctor's report, etc.)
4)  post-healing condition (how long since, is it permanent and complete
still today, etc.)
5)  contact info either for those involved or for yourself (you may want to
just do yourself, and whomever I forward this too, can follow up with you
more formally).


I would also like to include not only those who have been completely healed,
but also those who have had pd maybe 20 years or more, with little or no
progression, especially if they accomplished this with little medication or
other conventional treatment, or did it via altternative medicine.  Even
tho' I have a positive outlook in this area, I don't really anticipate being
overwhelmed with responses (which is in part why I'm offering to do this!).
On the other hand, if there are alot more happy endingss than expected,
believe me, I won't complain.

I have numerous reasons for proposing this.  With the passage of the Udall
Bill, funding will be provided for a PD database.  I tthink that this should
not only contain the standard info on all those who don't fare so well with
the disease (the majority), but also those whose lives are minimally
affected (the minority).  Perhaps in finding out the common denominators
among the latter, we can hopefully more effectively help  the former.  If
someone has already begun seriously collecting this data, please let me
know, and I won't then waste time duplicating another's effort.

I also believe that the more we see & hear such positive stories, the more
we believe in the possibility of the same for ourselves.  Whether our cure
eventually comes in the way of conventional or alternative medicine, or even
by miracles, we can help speed up that process by simply believing.  (Again,
if someone has already begun collecting this info, please also not only
inform me, but also please keep the group here apprised of your progress.

Frankly, I have my doubts as to whether this effort is already formally
underway, as I have not seen any other requests for specific data of this
type being made to the list.  I have also yet to hear any researcher/doctor
mentions any healings.  In fact, all I have ever been told is that it has
never happened.  And even though there are definitely known cases of people
surviving 30 years or more with pd, still living independently, the pd
literature continues to refer to it as "relentlessly progressive."  This is
a double-edged sword, as I will next discuss.  On the one hand it helps to
secure funding, on the other, it kills hope.

(WARNING - I know that this following commentary will certainly be
controversial, if not maybe piss some people here off - altho' that is not
at all my intent, and I apologize ahead to whomever I may offend) There may
be some who are against collecting this sort of positive data, as it might
detract from the concurrent effort to present pd at it's worst, in order to
get greater funding.  (similar in a sense to the person who recently wrote
in about not presenting too positive of a picture of oneself and one's
capabilities when applying for SSDI benefits).  I agree that in general,
when it concerns public opinion and research funding, that the best way to
get attention is to be dramatic,. cuz for the majority, that is their
reality (and at the moment, until I am healed, I include myself in this
group).  And obviously, those who are either barely affected by pd, or who
have been healed, don't have as critical of needs as those who aren't.   I
truly think, however, (and this is solely my own opinion),  that we can
reach the goal of a cure for us all much more quickly by factoring in this
minority (i.e., by giving their situation more attention and funding than is
currently done).  Believe me, I'm not belittling the efforts of those,
including myself, who have fought hard for pd to be recognized for the
destructive waste of life that it is, but as I'm determined to beat this
thing, one way or another, I don't want to ignore or waste any possible
resource.

So, I look foward to some responses to my survey.  Maybe once I'm done
collecting them, I'll quickly sum them up for everyone.  (I withold names
from this summary probably).

Wendy Tebay
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