Re: Miscellaneous answers for new members

[Schaaf Angus / Meadow Creek Ranch <sangusr@xxxxxxxx>]

Paul,

Some really good points!

If we don't go on and on, we'll  never get any where with  this new life
style that we've been "blessed" with. I'm a bit tired on jumping the
hurdles, but when  I find something that helps, Wow, what satisfaction!

Giving in would be too easy ........ but we have always been stubborn enough
not to take the easy way out ..... so.... don't unwind...... keep the fire
lit  and we might just help turn the  light on for another friend  who is
having trouble with a candle.

Hope  the Holidays were good to all and  we wish you the very best in the
New Year!

Rob, Deb, and all of our furry kids
----- Original Message -----
From: "Paul Lauer" <PHL1037@xxxxxxx>
To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sent: Thursday, December 27, 2001 5:47 AM
Subject: Miscellaneous answers for new members


> I have been asked by Emily and Michelle to expand upon a previous post. I
> believe there are enough new members to do so on-list even though the
> information is duplicative of that furnished previously.
> So at the risk of boring some but with a view toward informing others,
here
> is the information which I have previously furnished to the list, culled
from
> the PIENET archives, an historical resource which all newcomers should
learn
> to use:
> 1. Re: GM1 Ganglioside
>  <A
HREF="
2880256733002fd35a/75661b20fd8d65a4802569bd0002a819?OpenDocument">Re: GM1
ganglioside study from Parkinson's Information Exchange Network <
> PARKINSN@xxxxxxxxxxxxxxxxxxxx></A>
>
>  <A
HREF="
2880256733002fd35a/7a8cff11bbbfb6f280256a8a00140b6a?OpenDocument">Re: GM1
Ganglioside study from Parkinson's Information Exchange Network <
> PARKINSN@xxxxxxxxxxxxxxxxxxxx>
> </A>
> Update since these posts: The edema mentioned in one of the posts persists
> and I foolishly dropped out of the study 3 months ago thinking that the
trial
> medicine was causing the edema. It wasn't the cause (as it happens) and
I'm
> now reexamining my Requip as the culprit. That aside, I was told by the
study
> people that if I had applied now, I probably would not have been accepted
> since my current disease status (aside from tremor) is not severe enough
to
> meet the acceptance criteria whereas it was at the time of my original
> application leading to one of a few possibilities:
> a. The drug was working
> b. My regimen of vitamins and supplements, a combination of
recommendations
> by
> my MDS (Dr. Stanley Fahn, Columbia Presbyterian, NYC), my Neuro (Dr.
> Evangelos Xistris, Stamford, CT), and my own initiative, double checked
with
> one or the other above, is making a difference. This regimen includes 3000
> i.u. vitamin E, 3200 mg Vitamin C, Beta Carotene, Stresstab, Selenium 200
mg,
> Coenzyme Q10, 900 mg, and a cocktail of other stuff aimed at stiff joints,
> flagging memory and getting old and (other than PD) decrepit.
> c. The real possibility of the subjectiveness of the examinations giving
> inaccurate results. I was told that evidence of cogwheeling, strong when I
> entered the study was practically non existent and that my gait was
better.
> Hard things to judge since I was only Stage one when I began. I do know
that
> the micrographia has abated somewhat although the tremor has increased.
>
> In any event, I'm sorry I left the study and attempted to rejoin but I had
> burned a bridge too far by not taking the medication for three months.
>
> My opinion hasn't changed. If you can afford and tolerate the travel; if
you
> can stick yourself with a needle twice a day religiously (this actually
gets
> easier over time) then apply for the study and if accepted, join it.
>
> 2. PDrecoverers
> This is an alternative theory group who are trying a form of acupuncture
> combined with massage (I hope I'm not oversimplifying) to effect a cure.
> There is a belief that severe injuries to the foot in the past are at the
> root of the PD but I''m a little fuzzy on this. There is a main proponent
of
> the theory named Janice who has written about the theory. If you join, ask
> the list for someone to give you background information better than what I
> have given here because if you only read the posts, you'll feel as if
you've
> arrived in the middle of the story. None of the foregoing is intended to
be
> light hearted or pejorative. This is a serious group of people with PD who
> are trying an alternative method of coping and in the best case, curing.
> The group can be joined by sending an Email to:
> PDrecoverers-subscribe@xxxxxxxxxxxxxxxx
>
> 3. Bookmark the following site for a wealth of information including
access
> to the Archives:
>  <A HREF=";>PD INDEX: A directory of Parkinson's
disease information on the Internet</A>
>
> I do tend to go on and on once wound up.
>
> Paul H. Lauer
>
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