Re: Dr. Paneri--my final post on this topic! Yea!

[Rick Hermann <rickhermann@xxxxxxxxx>]

Hi Raj, J., Ervin, and all:

I really don't know more  than anyone else about all this miracle cure
stuff, and of course anyone can and should seek the care they find
useful and healing.

However, I take exception to  the idea that "the whole field of treating
PD is up in the air," as though decades of research, improved
medications, neuroprotective products, and tons of Parkinsons-specific
research drawing from the basic research being done in cellular biology
to find a cure for neurological diseases adds up to not much. We are so
lucky to have recourse to the available tools. We have hope for a cure
in  our lifetimes. Everyone who reads  a newspaper knows the progress
being made in  this direction.

J., I respectfully ask whether "rage" against the disease really such a
helpful approach? If Kubler-Ross is right about the stages leading from
diagnosis to peaceful acceptance, anger is step number 2 or 3, which I
guess means rage is natural but needs to be moved through. I am under no
illusion that I am being "cured" by anything I do or ingest to ease the
difficulties of living with Parkinson's. So far, there is no cure. Fact.
Take it or leave it.

I wish the Paneri adherents well, even though I don't think he's on to
anything (at best) and may be less than truthful in his promotion of the
supposed Parkinson's cure.

Finally, I don't think we're fighting here. It's a lively discussion and
one that interests a few of us. That's why I subscribe to this list.

Rick

On Sunday, December 29, 2002, at 05:40 PM, Automatic digest processor
wrote:

> Date:    Sun, 29 Dec 2002 14:02:02 -0400
> From:    Brightline <brightline@xxxxxxxxxxxxxxx>
> Subject: Re: Dr. Paneri
>
> Dear All:
>     I have to take my hats off to David Moreland for his open minded
> attitude.  In my understanding, that is all Dr. Paneri wants from us.
> Otherwise, Dr. Paneri would not have offered to treat Tom Bernadine
> with out
> charge.  However, Tom did not want to take that route and that is his
> prerogative.  Just ask yourself.  Would you offer to treat somebody
> without
> charge if you did not believe in your own medication?  It costs Rs. 500
> (roughly about US$ 11) for him to mail the stuff from India to North
> America.  I am sure that Dr. Paneri is aware that if Tom did not find it
> helpful,  he is not going to go anywhere with this.
>     A few of us are trying it out and I think it is our prerogative.
> As I
> told you before, I thought it was worth giving a shot. I did not say I
> believe in it hundred percent.  And even if it gives some temporary
> symptomatic relief our money would not have been wasted.   If it does
> not do
> any good, we shall wash our hands and let you all know it  does not
> work.
> That is all there is to it.  Nobody has to "eat crow" no matter what
> happens.  If it reall works wonders, as claimed by his patients, what
> do we
> have to complain about?  Please hold on to your horses.  Let us wait and
> see.
>     What we do not realize is that the whole field of treating PD is
> still
> up in the air.  Even diagnosis of PD is onlt 75% accurate since it is
> mainly
> done by physical examination by the experts.  I read a review of the
> diagnostic features of PD after somebody interviewed 300 Movement
> Disorder
> Specialists and each one had different criteria for the conclusions they
> have reached!  In my own cae, so far I have seen 6 MDSs and every one of
> them gave me different verdicts!  Some say it is ET and not PD, while
> others
> say it is both PD and ET!    One said that I may have some symptoms of
> PD
> but I wasn't ready for any treament yet!  How do you explain then the
> presence of postural instability, drooling, cramps in my calf muscles,
> difficulty in getting out of my car etc?  (Did you know that nobody
> knows if
> when people with ET symptoms develop PD symptoms, is it one or two
> different
> diseases?  Unlike ET, PD was not thought to be an inherited disease,
> which
> mayh not be necessarily true; there are more genetic defects in PD
> patients
> than in ET patients.  In fact, both may be equally familial and a
> certain %
> of them may not be familial.)
>     It appears that everything goes in this field.  Think of so many
> drugs
> for PD and nothing is working for everybody.  This is because I am told
> PD
> is a 'designer disease".  The same thing appears to be true for DBS, the
> most advanced treatment for PD.  Even after DBS, people are still taking
> Sinemet and some others are still experiencing diskenesia.  Is there any
> course of action one can take, where one is sure of alleviating all the
> symptoms, leave alone cure?
>     Somebody told that we are desparate to take this direction.  Is
> there
> any one of us not desparate about what is waiting in store for us?
>     I am in full agreement with you when you say that we should all
> act-up
> now and get politically involved in supporting the cause of stem cell
> studies.  But, if you are waiting for the stem cell cure to come along
> and
> save all of us from misery,  think again.  First you have to change the
> minds of the politicians or change the government.  Then the stem cell
> research have to be funded and then they have to find the cure after a
> lot
> of trials.  This would take a minimum of 10 years if not more.
> Personally I
> feel this would be too late for most of us.  That is another reason,
> why we
> should hurry up and change the minds of the ignorant or irrational
> politicians.  The only way is educating them as well as the general
> public
> and also letting the know of our sufferings and how we are wasting our
> life
> because of this ailment.
>     This is no time to fight amongst ourselves and blame each other for
> any
> reason at all.  I  request that people be open minded, be constructive
> (even
> if you do not agree), and not be abusive.  I do not think this is the
> purpose of this forum.
>     Thank you for your time.
>     Raj
> brightline@xxxxxxxxxxxxxxx
> *************
>
>
> ----- Original Message -----
> From: "David Moreland" <davelm@xxxxxxxxxxx>
> To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
> Sent: Sunday, December 29, 2002 10:41 AM
> Subject: Re: Dr. Paneri
>
>
> > Rick,
> > I guess we can agree to disagree. I don't know if dr Paneri's brew of
> herbs
> > and spices will effectively  treat PD but it seems like we could be
> > supportive of Raj, Evan and Nilo as they have opted to try it. And it
> > appears to be the only game in town. I am sure that they will give us
> > progress reports as time goes on and we will learn how effective it is.
>
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>
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> ------------------------------
>
> Date:    Sun, 29 Dec 2002 15:28:41 -0500
> From:    "J. Warner Mills" <avocat@xxxxxxxxxxxx>
> Subject: Re: Dr. Paneri
>
> Well said, Raj:
> After all why sit on one's hands doing nothing, waiting for what may
> not come
> for a long time?  Nothing ventured, nothing gained.  That's why I keep
> on
> evaluating logical and promising alternatives.  I've lived long enough
> to know
> there's more than one way in almost every human affliction.  After all
> they say
> this is a designer disease.  Maybe, just maybe, there are options out
> there that
> might apply to my situation.  My feelings, like yours, are, if I can
> add or
> regain even a few days of improved  functioning to my already numbered
> days, I'm
> going to go for it.  10 years from now I would have missed an enormous
> amount of
> living.  I'm going to continue to rage against the dimunition of my
> bodily
> functioning.  Money is going to do me no good when I'm twisted, in pain
> and
> hallucinating.  I sure can't take it with me at the close of the day.
> If I lose
> a few dollars trying, it's only money, at least I would have tried.
>
> jwm
> Brightline wrote:
>
> > Dear All:
> >     I have to take my hats off to David Moreland for his open minded
> > attitude.  In my understanding, that is all Dr. Paneri wants from us.
>
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> ------------------------------
>
> Date:    Sun, 29 Dec 2002 15:14:03 -0800
> From:    Ervin McCarthy <ervinmccarthy@xxxxxxxxxxx>
> Subject: Re: Dr. Paneri
>
> Warner , and other supporters of our search for an alternative.  Should
> this
> attempt be fruitful I will be the first to notify the list.  It may not
> be
> my last try for an alternative but I will always be on the search.  God
> bless the list.
> Ervin McCarthy

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