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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 <[log in to unmask]>
> 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
> [log in to unmask]
> *************
>
>
> ----- Original Message -----
> From: "David Moreland" <[log in to unmask]>
> To: <[log in to unmask]>
> 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.
>>
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
> mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
>
> ------------------------------
>
> Date: Sun, 29 Dec 2002 15:28:41 -0500
> From: "J. Warner Mills" <[log in to unmask]>
> 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.
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
> mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
>
> ------------------------------
>
> Date: Sun, 29 Dec 2002 15:14:03 -0800
> From: Ervin McCarthy <[log in to unmask]>
> 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
----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
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Week 3 December 2001, Week 2 December 2001, Week 1 November 2001, Week 5 November 2001, Week 4 November 2001, Week 3 November 2001, Week 2 November 2001, Week 1 October 2001, Week 5 October 2001, Week 4 October 2001, Week 3 October 2001, Week 2 October 2001, Week 1 September 2001, Week 5 September 2001, Week 4 September 2001, Week 3 September 2001, Week 2 September 2001, Week 1 August 2001, Week 5 August 2001, Week 4 August 2001, Week 3 August 2001, Week 2 August 2001, Week 1 July 2001, Week 5 July 2001, Week 4 July 2001, Week 3 July 2001, Week 2 July 2001, Week 1 June 2001, Week 5 June 2001, Week 4 June 2001, Week 3 June 2001, Week 2 June 2001, Week 1 May 2001, Week 5 May 2001, Week 4 May 2001, Week 3 May 2001, Week 2 May 2001, Week 1 April 2001, Week 5 April 2001, Week 4 April 2001, Week 3 April 2001, Week 2 April 2001, Week 1 March 2001, Week 5 March 2001, Week 4 March 2001, Week 3 March 2001, Week 2 March 2001, Week 1 February 2001, Week 4 February 2001, Week 3 February 2001, Week 2 February 2001, Week 1 January 2001, Week 5 January 2001, Week 4 January 2001, Week 3 January 2001, Week 2 January 2001, Week 1 December 2000, Week 5 December 2000, Week 4 December 2000, Week 3 December 2000, Week 2 December 2000, Week 1 November 2000, Week 5 November 2000, Week 4 November 2000, Week 3 November 2000, Week 2 November 2000, Week 1 October 2000, Week 5 October 2000, Week 4 October 2000, Week 3 October 2000, Week 2 October 2000, Week 1 September 2000, Week 5 September 2000, Week 4 September 2000, Week 3 September 2000, Week 2 September 2000, Week 1 August 2000, Week 5 August 2000, Week 4 August 2000, Week 3 August 2000, Week 2 August 2000, Week 1 July 2000, Week 5 July 2000, Week 4 July 2000, Week 3 July 2000, Week 2 July 2000, Week 1 June 2000, Week 5 June 2000, Week 4 June 2000, Week 3 June 2000, Week 2 June 2000, Week 1 May 2000, Week 5 May 2000, Week 4 May 2000, Week 3 May 2000, Week 2 May 2000, Week 1 April 2000, Week 5 April 2000, Week 4 April 2000, Week 3 April 2000, Week 2 April 2000, Week 1 March 2000, Week 5 March 2000, Week 4 March 2000, Week 3 March 2000, Week 2 March 2000, Week 1 February 2000, Week 5 February 2000, Week 4 February 2000, Week 3 February 2000, Week 2 February 2000, Week 1 January 2000, Week 5 January 2000, Week 4 January 2000, Week 3 January 2000, Week 2 January 2000, Week 1 December 1999, Week 5 December 1999, Week 4 December 1999, Week 3 December 1999, Week 2 December 1999, Week 1 November 1999, Week 5 November 1999, Week 4 November 1999, Week 3 November 1999, Week 2 November 1999, Week 1 October 1999, Week 5 October 1999, Week 4 October 1999, Week 3 October 1999, Week 2 October 1999, Week 1 September 1999, Week 5 September 1999, Week 4 September 1999, Week 3 September 1999, Week 2 September 1999, Week 1 August 1999, Week 5 August 1999, Week 4 August 1999, Week 3 August 1999, Week 2 August 1999, Week 1 July 1999, Week 5 July 1999, Week 4 July 1999, Week 3 July 1999, Week 2 July 1999, Week 1 June 1999, Week 5 June 1999, Week 4 June 1999, Week 3 June 1999, Week 2 June 1999, Week 1 May 1999, Week 5 May 1999, Week 4 May 1999, Week 3 May 1999, Week 2 May 1999, Week 1 April 1999, Week 5 April 1999, Week 4 April 1999, Week 3 April 1999, Week 2 April 1999, Week 1 March 1999, Week 5 March 1999, Week 4 March 1999, Week 3 March 1999, Week 2 March 1999, Week 1 February 1999, Week 4 February 1999, Week 3 February 1999, Week 2 February 1999, Week 1 January 1999, Week 5 January 1999, Week 4 January 1999, Week 3 January 1999, Week 2 January 1999, Week 1 December 1998, Week 5 December 1998, Week 4 December 1998, Week 3 December 1998, Week 2 December 1998, Week 1 November 1998, Week 5 November 1998, Week 4 November 1998, Week 3 November 1998, Week 2 November 1998, Week 1 October 1998, Week 5 October 1998, Week 4 October 1998, Week 3 October 1998, Week 2 October 1998, Week 1 September 1998, Week 5 September 1998, Week 4 September 1998, Week 3 September 1998, Week 2 September 1998, Week 1 August 1998, Week 5 August 1998, Week 4 August 1998, Week 3 August 1998, Week 2 August 1998, Week 1 July 1998, Week 5 July 1998, Week 4 July 1998, Week 3 July 1998, Week 2 July 1998, Week 1 June 1998, Week 5 June 1998, Week 4 June 1998, Week 3 June 1998, Week 2 June 1998, Week 1 May 1998, Week 5 May 1998, Week 4 May 1998, Week 3 May 1998, Week 2 May 1998, Week 1 April 1998, Week 5 April 1998, Week 4 April 1998, Week 3 April 1998, Week 2 April 1998, Week 1 March 1998, Week 5 March 1998, Week 4 March 1998, Week 3 March 1998, Week 2 March 1998, Week 1 February 1998, Week 5 February 1998, Week 4 February 1998, Week 3 February 1998, Week 2 February 1998, Week 1 January 1998, Week 5 January 1998, Week 4 January 1998, Week 3 January 1998, Week 2 January 1998, Week 1 December 1997, Week 5 December 1997, Week 4 December 1997, Week 3 December 1997, Week 2 December 1997, Week 1 November 1997, Week 5 November 1997, Week 4 November 1997, Week 3 November 1997, Week 2 November 1997, Week 1 October 1997, Week 5 October 1997, Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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